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THE ENCYCLOPEDIA OF

AUTISM SPECTRUM
DISORDERS

Carol Turkington
Ruth Anan, Ph.D.
The Encyclopedia of Autism Spectrum Disorders

Copyright © 2007 by Carol Turkington

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Library of Congress Cataloging-in-Publication Data

Turkington, Carol.
The encyclopedia of autism spectrum disorders / Carol Turkington, Ruth Anan.
p. ; cm.
Includes bibliographical references and index.
ISBN 0-8160-6002-9 (hc : alk. paper)
1. Autism—Encyclopedias. I. Anan, Ruth. II. Title. III. Title: Autism spectrum disorders.
[DNLM: 1. Autistic Disorder—Encyclopedias—English. WM 13 T939e 2007]
RC553.A88T87 2007
616.85’882003—dc22 2005027227

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CONTENTS

Foreword iv
Acknowledgments vii
Introduction viii
Entries A–Z 1
Appendixes 165
Glossary 284
Suggested Reading 286
Index 309
FOREWORD
A utism spectrum disorders are pervasive devel-
opmental disabilities in which the core impair-
ments have a profound influence on children’s
with more advanced language skills may demon-
strate more subtle impairments. Their language
may be stilted, or they may carry on monologues
development. A relative or total absence of recipro- about topics of interest to them, without regard to
cal social interactive skills is the primary symptom whether or not anyone is following their discourse.
seen in young children with autism spectrum dis- Pretend play and nonvocal communication using
orders. Unlike typically developing toddlers, who gestures and facial expression are generally also
make almost nonstop bids for parental attention, delayed.
these children make less frequent eye contact and In contrast to these two “negative symptoms,”
direct fewer facial expressions toward their par- or absences of specific skills, the third symptom
ents. They also fail to share their interest in things of autistic spectrum disorders involves behav-
they see through pointing and holding up objects ioral excess. Children diagnosed with autism may
for their parents to see. Typically developing tod- engage in repetitive mannerisms, such as flapping
dlers usually accompany these actions with sounds their hands, flicking their fingers in front of their
(and, later, actual words) to draw their parents’ eyes, pacing back and forth, running on tiptoe,
attention. In addition, they usually alternate their and so on. Objects may be used in unusual ways,
gaze between an object of interest and a parent’s such as spinning or tapping them or repeatedly
face. This stands in stark contrast with the way flicking a doll’s eyes open and shut. Some children
that an autistic child has trouble initiating a shared demonstrate an excessive interest in unusual top-
focus of attention. Likewise, children with autism ics, becoming fascinated with sprinkler systems
have trouble responding to their parents’ bids for or vacuums. Children diagnosed with autism also
shared attention. may be rigid, insisting on following specific ritu-
A significant problem with communication is als, demanding to perform activities in an exact
another core symptom in autistic spectrum dis- order, or following the same route to a destination.
orders. Preschoolers diagnosed with autism may When unable to engage in these ritualistic behav-
demonstrate delays in spoken language or may be iors, they become highly anxious or upset.
completely nonverbal. They may simply echo what Other behavioral excesses, although not part of
is said to them without meaning. Some children the core diagnostic symptoms of autism, also may
may be able to speak but demonstrate a lack of occur. Repetitive actions sometimes evolve into
pragmatic communication skills. In other words, self-injurious behaviors, such as head-banging,
they may be able to respond to direct questions but hand-biting, or face-slapping. Children unable to
cannot engage in back-and-forth conversations. effectively communicate their wants or needs may
They may recite pieces of dialogue from videos or scream, scratch, or hit. Parents, in their haste to
books, using these phrases out of context. Children end these disruptive actions, may attempt to placate

iv
Foreword v

their children by offering desired objects or activi- Although experts widely agree that interven-
ties following aggression or self-injury, thereby tion should be both intensive and implemented at
inadvertently rewarding undesirable behaviors. an early age, there is a lack of consensus regarding
Effective treatment for autistic spectrum disorders exactly what form it should take. Of all treatment
must target these three core areas of impairment: options, intervention using principles of behavior
communication, reciprocal social interactions, and analysis has the strongest support from research. A
atypical behaviors. considerable number of studies have documented
Although the specific causes of autistic spec- substantial treatment gains in children receiving
trum disorders are still largely unknown, there is intensive, behaviorally based intervention. Fur-
consensus that autism is a biologically based, neu- thermore, there is evidence suggesting that treat-
rodevelopmental disorder with a strong genetic ment based on principles of behavior analysis is
component. In the last decade, symptoms of autism superior to equally time-intensive intervention
have been identified in younger and younger chil- using other methods.
dren, with diagnoses now being made as early as Treatment programs using behaviorally based
18–24 months of age. Parents of newly diagnosed techniques vary considerably in their emphasis on
preschoolers often retrospectively report that their formal discrete trial teaching versus more natu-
children showed negative symptoms, such as ralistic teaching strategies. Discrete-trial training
absent or impaired social and language skills much is highly directive, with the adult providing the
earlier. instruction and delivering the appropriate con-
As a result, routine screening for autism spec- sequence based on the child’s response. Discrete
trum disorders is now recommended by many pro- trials are typically conducted at a table, but can
fessional organizations, including the American be embedded within enjoyable play activities and
Academy of Pediatrics, the American Academy of daily routines. Sometimes criticized as an artificial
Neurology, and the National Research Council of manner of instruction, discrete trial teaching nev-
the National Academy of Science. Increasingly sen- ertheless has been shown to be an effective and
sitive screening instruments have been developed efficient way to teach skills. However, it is also
to identify children at risk, who are then referred essential to use systematic methods of generalizing
to interdisciplinary diagnostic centers. According these skills into natural settings in order to ensure
to current best-practice guidelines, comprehensive their effective use.
evaluation should include a combination of medi- Other behavioral teaching methods, such as
cal, developmental, and behavioral information. naturalistic environment training, emphasize a
A primary goal of early identification of autism child-initiated interaction in a less structured envi-
spectrum disorders is to implement interventions ronment. The common premise of naturalistic
as soon as possible—and the earlier treatment behavioral approaches to treatment is that targeted
begins, the more progress can be made. To date, skills should be taught in the child’s environment,
the most dramatic changes occur when children in a conversational or play context. Reinforcers
receive early and intensive behavioral intervention. should be related to the child’s current interest, and
The National Academy of Science recommends “a teaching trials should be interspersed with other
minimum of 25 hours per week, 12 months a year, enjoyable activities. For example, when used to
in which the child is engaged in systematically teach communication skills, the adult provides the
planned and developmentally appropriate educa- desired item only after the child uses a specific form
tional activity toward defined objectives” (National of communication. Children with limited ability to
Research Council, 2002, p. 6). Clinical guidelines imitate vocal sounds at first may learn functional
developed by the New York State Department of communication skills using either signs or pictures.
Health and Early Intervention advocate a mini- Current trends in treatment emphasize the
mum of about 20 hours per week of individualized necessity of intervention based on valid research.
behavioral intervention using applied behavioral Therefore, based on currently available research,
analysis techniques. effective intervention for children with autism
vi The Encyclopedia of Autism Spectrum Disorders

should come from the field of applied behavior For children with autism, this often translates
analysis. Furthermore, it should provide the spe- into more than 20 hours of weekly one-on-one
cific blend of behavioral strategies best suited for intervention. While expensive, cost-benefit analy-
each individual child at each particular stage of ses demonstrate that “front-loading” expenses (in
learning. Such intervention must be of suitable other words, providing the highest intensity of
intensity to be effective. In addition, treatment intervention during the preschool years) actually
must begin as soon as it is recognized that a child saves money in the long run.
has an autism spectrum disorder, with the goal of —Ruth Anan, Ph.D.
improving each child’s eventual level of function- Director, Early Childhood Program
ing as much as possible. Center for Human Development
ACKNOWLEDGMENTS
T he creation of this encyclopedia involved the
help and guidance of a wide range of experts,
without whom it could not have been possible.
Technology and Disabilities, Family Education
Network, Federation for Children with Special
Needs, Federation of Families for Children’s Men-
Thanks to the staffs of the National Institutes of tal Health, the Food and Drug Administration,
Health; the American Academy of Pediatrics; Learning Disabilities Association, National ADD
American Academy of Allergy, Asthma & Immu- Association, National Adoption Center, National
nology; American Academy of Child and Adoles- Alliance for Autism Research, National Aphasia
cent Psychiatry; American Association of People Association, National Association for the Educa-
with Disabilities; American Occupational Therapy tion of Young Children, National Association of
Association; American Psychiatric Association; the Deaf, National Center for Learning Disabili-
American Psychological Association; American ties, National Health Information Center, National
Speech-Language-Hearing Association; Autism Information Center for Children and Youth with
Network International; Autism Research Insti- Disabilities, National Institute of Child Health and
tute; Autism Society of America; Childhood Human Development, National Institute of Men-
Apraxia of Speech Association of North America; tal Health, National Vaccine Information Center,
and Children and Adults with Attention Deficit and the Obsessive-Compulsive Foundation.
Disorder. Also the Children’s Health Informa- Thanks to my agents, Gene Brissie and Ed Claf-
tion Network, Council for Exceptional Children, lin; to my editor, James Chambers; to Sarah Fog-
Council for Learning Disabilities, Dana Alliance arty, Grace Persico, and Vanessa Nittoli at Facts On
for Brain Initiatives, ERIC Clearinghouse on Dis- File; and to Kara and Michael. And a very special
abilities and Gifted Education, Family Center for thank you to the entire staff at Luciano’s!

vii
INTRODUCTION
N ot until the middle of the 20th century was
there a name for a disorder that now appears
to affect at least one of every 500 children in Amer-
communication and social skills and impairing
the child’s ability to play, speak, and relate to
the world. Parents are usually the first to notice
ica—a disorder that disrupts families and leads to unusual behaviors in their child. In some cases,
unfulfilled lives for many children. In 1943, Dr. the baby seems “different” from birth, unrespon-
Leo Kanner of the Johns Hopkins Hospital studied sive to people or focusing intently on one item for a
a group of 11 children with baffling symptoms and long time. The first signs of an ASD can sometimes
came up with the label “early infantile autism.” At appear in children who seem to have been develop-
the same time, German scientist Dr. Hans Asperger ing normally. When an engaging, babbling toddler
described a milder form of the same disorder that suddenly becomes silent, withdrawn, self-abusive,
today bears his name: Asperger’s syndrome. or indifferent to social overtures, parents know
Today, these disorders are listed in the Diagnostic immediately that something is wrong. Research
and Statistical Manual of Mental Disorders (fourth edi- has shown that parents are usually correct about
tion, text revision; DSM-IV-TR) as two of the five noticing developmental problems, although they
pervasive developmental disorders, more often may not realize the specific nature or degree of the
referred to today as autism spectrum disorders problem.
(ASDs). All five of these disorders on the autism While autism was always one of the most com-
continuum are characterized by varying degrees of mon developmental disabilities, in the past sev-
impairment in communication skills, social inter- eral years an apparent increase in the number of
actions, and restricted, repetitive, and stereotyped children diagnosed with the disorder has schools
patterns of behavior. The ASDs range from a severe straining to provide services and health officials
form, called autistic disorder (more commonly urgently seeking the cause of the condition.
known as the classic “autism”), to a milder form— The U.S. Department of Education reports a 173
Asperger’s syndrome. If a child has symptoms of percent increase in autistic children served under
either of these disorders but does not meet the the Individuals with Disabilities Education Act
specific criteria for either, the diagnosis is called between the 1992–93 school year (when 15,580
pervasive developmental disorder–not otherwise children were counted) and 1997–98, when the
specified (PDD-NOS). Other rare, very severe dis- figure jumped to 42,500. The situation appears
orders that are included in the autism spectrum to be particularly acute in California, where a
disorders are Rett disorder and childhood disinte- 273 percent increase was recorded in the number
grative disorder. of autistic children entering various state treat-
Autism is a baffling brain disease usually ment centers between 1987 and 1998. Critics have
appearing before a child’s third birthday—some- argued that the increase is due to a change in the
times as early as 18 months—profoundly affecting definition of autism (it is now much more broadly

viii
Introduction ix

defined) or better or earlier diagnostic techniques. The book includes topics in three key areas:
Opponents insist the increase is real and occurs for
some as-yet-unknown reasons. The debate con-
tinues, and research is ongoing. In the meantime, Autism spectrum disorders
thousands of very real families struggle every day
with the challenges inherent in this heart-break- • autistic disorder (autism) (both low- and high-
ing condition that seems to isolate children in a functioning)
remote, unreachable world. • Asperger’s syndrome
Much about autism is debatable and often con- • Rett disorder
troversial, including the varied theories for its • pervasive developmental disorder–not otherwise
cause (vaccines, viruses, environmental toxins, specified (PDD-NOS)
faulty genes, diet) and potential treatments (drugs,
hug therapy, aversive therapy, behavioral therapy, • childhood disintegrative disorder
squeeze boxes, psychotherapy, vitamin therapy, or
special diets). Even the terminology used in the Legal discussions of relevant topics
area of autism spectrum disorders has undergone
dramatic change. The ways that experts describe • Disabilities Education Act
individuals and their symptoms have grown more
• Americans with Disabilities Act
diagnostically accurate, and ongoing refinement of
legislation better protects the rights of those with • Rehabilitation Act of 1973
autism and other severe disabilities. Clearly, there • special needs trusts
is an enormous amount of information desperately • estate planning
needed by people with autism and their families,
teachers, and doctors.
In The Encyclopedia of Autism, we have tried to School-related entries
present this information in a clear, balanced,
concise format easily understood by the general • independent education evaluations
reader, containing the latest findings, treatments, • individualized education programs
and methods of managing symptoms. Where there • individualized transition plans
is controversy, we have tried to present both sides.
Where there is ongoing research, we have pointed • assessments and screening tools
out the directions it may take.
This book has been designed as a guide and Readers should keep in mind, however, that
reference to a wide range of issues in the field of changes occur rapidly in this field. A bibliography
autism and contains entries discussing the various has been provided for readers who seek additional
types and subtypes of autism, symptoms, suggested sources of information. Information in this book
causes and treatments, leading scientists, lifestyle comes from the most up-to-date sources available
and estate planning issues, and the latest research. and includes some of the most recent research in
Appendixes include major autism-related organi- the field of learning disabilities, culled from leading
zations, a “Read More about It” section featuring textbooks and professional journals, in addition to
special books with autism information written for the personal experience of the expert coauthor. It
patients and their families, a list of ongoing cur- is not a substitute for prompt assessment and treat-
rent clinical trials into autism spectrum disorders, ment by experts trained in the diagnosis of autism
and lists of state autism-related resources. A glos- spectrum disorders.
sary of basic medical terms and an index are also —Carol Turkington
included. Cymru, Pennsylvania
ENTRIES A–Z
A
ability test Test of ability, such as an intelligence umentation of a disability and they are otherwise
test, that measures an individual’s aptitude to per- qualified for a position.
form a task, manipulate information, or solve prob-
lems. Typically, tests of ability are used to assess
specific performance abilities or potential for future Achenbach Childhood Behavior Checklist (CBCL)
learning rather than stored information. Among the A standardized assessment designed to investigate
most commonly used ability tests are the Wechsler social competence and behavior problems in chil-
Intelligence Scale for Children, either revised or dren aged four to 18 as reported by parents. The
third edition (WISC-R or WISC-III), the Scholas- CBCL can be filled out by parents or administered
tic Aptitude Test (SAT), which is widely used in by an interviewer. It consists of 118 items related
college admissions processes, and the Woodcock- to the child’s behavior problems that are scored
Johnson-III cognitive battery, which is commonly on a three-point scale ranging from “not true” to
used in public school settings to define a baseline “often true.” There are also 20 social competency
of aptitude against which achievement can be mea- items used to obtain parents’ reports of the amount
sured in determining whether a learning disability and quality of their child’s participation in sports,
is present. hobbies, games, activities, organizations, jobs and
Ability tests can be physical or mental. They chores, friendships, how well the child gets along
can test verbal or non-verbal areas, and are also with others, how well the child plays and works
frequently used to assess potential employees for alone, and school functioning. It was developed
specific tasks. Depending on the nature of the test, by psychologists Thomas M. Achenbach and Craig
various professionals may be involved in its admin- Edelbrock.
istration. Specific clinical training in psychology
is required to administer the Wechsler or other
intelligence tests, while the Woodcock-Johnson activities of daily living Personal-care activities
may be given by school guidance counselors with necessary for everyday living, such as eating, bath-
appropriate training. Standardized tests, such as ing, grooming, dressing, and toileting. People with
the SAT, must be administered in specific contexts autism may not be able to perform these activities
according to specific testing procedures, but over- without help. Professionals often assess a person’s
seeing such tests requires no formal professional activities of daily living as a way of determining
training. what type of care is needed.
Ability tests have particular importance in rela-
tion to the Americans with Disabilities Act, which
protects individuals with disabilities from discrimi- adaptive living skills Skills used in everyday liv-
nation, especially in the workplace. Ability tests ing, such as gross and fine motor skills, eating and
designed to assess mechanical abilities, clerical food preparation, toileting, dressing, personal self-
abilities, and other job-related abilities can prevent care, domestic skills, time and punctuality, money
equal access. Individuals can request alternative and value, home and community orientation, and
assessment of their abilities if they can provide doc- work skills. Techniques from the field of APPLIED

1
2 ADD

BEHAVIOR ANALYSIS often are used to teach adaptive tion about these programs is available from the U.S.
living skills to individuals with autism. Social Security Administration.
Foster and skill-development homes Some fam-
ilies open their homes to provide long-term care to
ADD See ATTENTION DEFICIT DISORDER. unrelated adults with autism. If the home teaches
self-care and housekeeping skills and arranges lei-
sure activities, it is called a “skill-development”
Adderall See DEXTROAMPHETAMINE/AMPHETAMINE. home.
Supervised group living People with disabilities
often live in group homes or apartments staffed by
adults with autism Some adults with AUTISM SPEC- professionals who help the individuals with basic
TRUM DISORDER (ASD), especially those with high- needs, such as meal preparation, housekeeping,
functioning autism or with ASPERGER’S SYNDROME, and personal care. Higher functioning people with
are able to work successfully in mainstream jobs. autism may be able to live in a home or apartment
Nevertheless, communication and social problems with a few visits from staffers each week. These
often cause difficulties in many areas of life, and high-functioning individuals generally prepare
these adults will continue to need encouragement their own meals, go to work, and conduct other
and support in their struggle for an independent life. daily activities on their own.
Many others with ASD can work in sheltered Institutions Although the trend in recent
workshops under the supervision of managers decades has been to avoid placing people with dis-
trained in working with persons with disabilities. abilities into long-term-care institutions, this alter-
A nurturing environment at home, at school, and native is still available for people with autism who
later in job training and at work, helps individu- need intensive, constant supervision. Unlike many
als with ASD continue to learn and to develop of the institutions years ago, today’s facilities are far
throughout their lives. more humane and consider residents as individuals
The public schools’ responsibility for providing with human needs. Residents are typically offered
services ends when the student with ASD reaches opportunities for recreation and simple but mean-
the age of 22. The family is then faced with the chal- ingful work.
lenge of finding living arrangements and employ-
ment to match the needs of this person, as well as
the programs and facilities that can provide support akathisia A condition of inner restlessness and an
services. Long before a child finishes school, par- inability to keep still, also known as “restless legs.”
ents should identify the best programs and facilities Akathisia may be a side effect of some neuroleptic
for the young adult. drugs.

Living Arrangements
Independent living Some adults with ASD are allergy to cow’s milk Although the cause of
able to live entirely on their own, while others autism is not known, some experts believe that an
can live semi-independently in their own home or allergy to cow’s milk may play a role in exacerbat-
apartment if they have help with personal finances, ing the condition. However, not all researchers and
coping with government services, and so on. This experts agree about whether this theory is scientifi-
assistance can be provided by family, a professional cally valid and whether there is a link between diet
agency, or another type of provider. and autism symptoms.
Living at home Government funds are avail- Nevertheless, sometimes parents report behav-
able for families who choose to have their adult ioral improvements when their children stop drink-
child with ASD live at home, including SUPPLEMEN- ing milk. Some researchers have found evidence
TAL SECURITY INCOME (SSI), Social Security Disability of higher levels of certain peptides in the urine of
Insurance (SSDI), and Medicaid waivers. Informa- children with autism, which may mean that some
American Sign Language 3

peptides from foods containing casein (such as increase in computerized communication systems.
dairy products) have not been broken down com- Teaching sign language to people with autism does
pletely. Brain function may be disturbed if protein not interfere with learning to talk; in fact, research
is not broken down or absorbed correctly. As yet, suggests that teaching sign language along with
researchers are not sure why these proteins do not speech will speed up verbal communication.
break down. People with different levels of autism can
Experts caution that parents of an autistic child be taught to use sign language. Many aberrant
who want to try a milk-free diet to see if it improves behaviors associated with autism such as aggres-
symptoms should first consult a gastroenterologist sion, tantrums, self-injury, anxiety, and depres-
and nutritionist who can give advice on proper sion are often caused by frustration over the
nutrition. inability to communicate. Teaching people to use
sign language decreases these problem behaviors
and also may improve their attentiveness to social
aloofness Social indifference is common in people gestures.
with autism, making them appear uninterested in Teaching sign language and speech at the same
social interaction, although scientists are not com- time is often referred to as signed speech, simul-
pletely sure why. One of the striking characteris- taneous communication, or total communication.
tics of autism is “face blindness,” meaning that the Although there are several different forms of sign
patient is unable to “read” a person’s face to detect language, when using signed speech, experts say it
emotional cues. This often results in impaired social is best to use the “Signing Exact English” or “Signed
behavior. English” method, which uses the same syntax as
Many experts believe that the root cause of spoken language. This method helps reinforce the
impaired social behavior typical of people with syntactic rules of spoken language. For example,
autism is probably related to a glitch in the brain. a statement using both Signed English and speech
Some research suggests it could be a specific prob- would be: “pet the cat.” In contrast, the syntax of
lem in the opioid signaling system. Brain opiates American Sign Language would be: “cat pet.” Since
help a person understand positive outcomes and most people do not understand sign language, some
positive rewards, such as those that occur in pleas- experts believe it is better to use a form of picture
ant social exchanges. Mice studies suggest that system or computerized communication device in
when opiate receptors are destroyed, the mice pups addition to Signed Speech to enable communica-
do not respond normally to their mothers. tion with those who do not understand the signs.
Signed English often uses the first letter of the word
(also called initialization) with the basic movement
American Sign Language (ASL) A visual-gestural of the sign to give hints to the intended word. This
language initially developed as a primary means of system also includes markers for prefixes, suffixes,
communication among individuals with hearing plural endings and tenses, together with signs for
problems in the United States. ASL has a unique articles, infinitives, and all forms of the verb “to
grammar and syntax and is unrelated to English, be.” This system is not used by deaf adults except
although it reflects English influences. This visual for some initial signs that have found their way into
language requires many nonmanual features, popular usage.
including facial expressions and body language. It Many linguists believe that it is only when sign
also includes finger spelling (the manual alphabet) language differs completely from English that it
to spell out words, including proper names and may properly be called American Sign Language,
technical phrases. Sign language is also used to teach although some use ASL as a catchall term to describe
people with autism and other DEVELOPMENTAL DIS- an entire range of manual communication. At one
ABILITIES who have little or no communication skill. end of the sign language continuum is finger spell-
Teaching autistic children how to use sign lan- ing, in which hand shapes are used to spell out
guage is not as common as it once was due to the each word of the English language while speaking
4 Americans with Disabilities Act

or moving the lips. This method (also called the job. The IDEA and RA offer more specific protec-
Rochester method, or visible English) can be tiring tions and regulations in regard to schools.
to use and interpret. Further along the continuum On the job, employers are required to provide
are manually coded English systems, which use fair opportunities to those with disabilities if they
finger spelling but also include signs and markers. are “otherwise qualified” for a position. For exam-
The most common forms of this system are Signed ple, a person who is partly blind cannot perform
English and Signed Exact English. the essential functions of airline pilots. A person in
In the middle of the sign language continuum a wheelchair, however, may be able to perform the
is a system called Pidgin Sign English, the system essential functions of a bookkeeper, and therefore
used most often by hearing people learning to com- should not be discriminated against based on physi-
municate with deaf people. This combines English cal limitations.
with the vocabulary and nonmanual features of In addition, employers and schools may be
ASL, and is the preferred method of communica- required to provide accessibility to buildings for
tion by many deaf people. those who have physical disabilities. Employers
When used in the true sense of the word, ASL with more than 15 employees also may be required
means the patterns used by deaf persons when they to provide accommodations for employees with
communicate in sign in a non-English style. Nei- specific needs based on their disability, such as
ther articles nor speech are used, although finger equipment or more frequent breaks. “Disability” is
spelling is used for proper names. an important term from a legal perspective, as it
One possible reason why teaching sign language distinguishes those with temporary or less severe
and speech helps a child learn to speak more quickly limitations from those for whom a physical or men-
is that both forms of communication stimulate the tal impairment limits major life activities.
same area of the brain. Thus, when using Signed However, the ADA clearly protects educational
Speech, the area of the brain involved in speech institutions and employers from requirements to
production is stimulated from two sources (signing provide accommodations that cause unreasonable
and speaking) rather than from one source (signing burdens or that represent significant lowering of
or speaking) alone. educational standards.

Americans with Disabilities Act (ADA) Legisla- Anafranil See CLOMIPRAMINE.


tion enacted in July 1990 that prohibits discrimina-
tion against individuals with disabilities, including
autism. It guarantees equal opportunity for people Angelman syndrome (AS) A childhood disorder
with disabilities in terms of jobs, public accommo- characterized by HYPERACTIVITY, seizures, exces-
dations, transportation, and telecommunications, sive laughter, and developmental delays. Initially
as well as other state services. presumed to be rare, Angelman syndrome is now
The ADA represents a significant addition to believed to affect thousands of children who are
the scope of protections defined by the Civil Rights undiagnosed or misdiagnosed as having autism or
Act of 1964, which was not designed to protect the other childhood disorders.
rights of those with disabilities. It also augments In 1965, English physician Harry Angelman,
other laws that address issues of disability and M.D., first described three children with a set of
access to education and employment opportuni- characteristics now known as Angelman syndrome,
ties, such as the INDIVIDUALS WITH DISABILITIES EDU- including stiff, jerky gait; lack of speech; excessive
CATION ACT (IDEA) and the REHABILITATION ACT OF laughter; and seizures. Other cases were eventu-
1973 (RA). ally published, but the condition was considered to
While the ADA covers many areas of possible be extremely rare, and many physicians doubted
discrimination (including schools), it is used pri- its existence. The first reports from North America
marily to protect individuals with disabilities on the appeared in the early 1980s, and since then many
antidepressants 5

new reports have appeared. In the United States and milder cases, the child’s attention span may be suf-
Canada, there are about 1,000 diagnosed individu- ficient to learn sign language and other communica-
als, but it has been reported throughout the world tion techniques. For these children, educational and
among divergent racial groups. In North America, developmental training programs are much easier
most cases seem to be of Caucasian origin. to structure and are generally more effective.
Most children do not receive drug therapy for
Symptoms and Diagnostic Path hyperactivity although some may benefit from use
Hyperactivity and a short attention span are probably of medications such as methylphenidate (Ritalin).
the most typical behaviors, affecting boys and girls
about equally. Infants and toddlers may be continu-
ally active, constantly keeping their hands or toys animal therapy A type of treatment sometimes
in their mouths or moving from object to object. In used for people with autism, that may include
extreme cases, the constant movement can cause horseback riding or swimming with dolphins.
accidental bruises. In older children, there may be Some experts believe that therapeutic horseback
grabbing, pinching and biting. A child’s attention riding programs (sometimes referred to as hippo-
span can be so short that it interferes with social therapy) may provide both physical and emotional
interaction, since the child cannot pay attention to benefits, improve coordination and motor develop-
facial and other social cues. Excessive laughter is ment, and create a sense of well-being and self-con-
also quite common, which seems to be a reaction to fidence. However, no studies using control groups
physical or mental stimuli. Parents may first notice have found animal therapy to be significantly effec-
this laughter at the age of one to three months. Gig- tive for children with autism.
gling, chortling and constant smiling soon develop Dolphin therapy was first tried in the 1970s by
and appear to represent normal reflexive laughter, David Nathanson, a psychologist who believed that
but cooing and babbling are delayed. interactions with dolphins would increase a child’s
Other symptoms include attention span, enhancing cognitive processes. In
anecdotal studies, he found that children with dis-
• developmental delay abilities learned faster and retained information
• severe speech impairment with almost no use of longer when they were with dolphins compared to
words children who learned in a classroom setting.
• movement or balance disorder See also DOLPHIN-ASSISTED THERAPY.
• easily excitable personality, often with HAND-
FLAPPING movements
antidepressants Medications used to treat depres-
• abnormally small head sion that also may be used to treat patients with
• seizures autism in order to reduce the frequency and inten-
sity of repetitive behavior; decrease irritability, tan-
Angelman syndrome is usually not recognized at trums, and aggression; and improve eye contact
birth or in infancy, since the developmental prob- and responsiveness. Antidepressants used to treat
lems are hard to spot at that time. Parents may autism include amitriptyline (Elavil), bupropion
first suspect the diagnosis after reading about AS (Wellbutrin), CLOMIPRAMINE (Anafranil), FLUVOX-
or meeting a child with the condition. The most AMINE (Luvox), and FLUOXETINE (Prozac).
common age of diagnosis is between age three and
seven, when the characteristic behaviors and fea- Side Effects
tures become evident. There can be a wide variety of possible side effects,
depending on the type of antidepressant used. Side
Treatment Options and Outlook effects include insomnia, dizziness, drowsiness,
Persistent and consistent behavior modification sexual problems, excitability or nervousness, sei-
helps decrease or eliminate unwanted behavior. In zures, and weight loss or gain.
6 antiepileptic medication

antiepileptic medication A class of medications control aggression and HYPERACTIVITY along with
normally prescribed to control seizures in patients behavioral problems and withdrawal. More typi-
with epilepsy. These medications also can be used cally these drugs treat psychotic behavior in psychi-
to help control aggressive behaviors in patients atric patients. The fact that this drug works both for
with autism. They help to stabilize brain activity autism and psychiatric illness does not mean that
and therefore assist in the control of behavior. the two conditions are related, however.
The administration of antiepileptic medications Risperdal (RISPERIDONE) is the most common
often requires regular blood testing in order to ensure antipsychotic used for autistic patients, lessening
that liver or bone marrow damage does not occur. aggression, agitation, and explosive behavior. Side
Since these medications are designed to treat seizure effects include sedation, weight gain, dizziness, and
activity, they are often prescribed for children who muscular stiffness.
suffer a seizure disorder as well as autism. Zyprexa (olanzapine) relieves the same symp-
Depakote (valproate), which can lessen explo- toms as Risperdal and causes the same side effects,
sive behaviors and aggression, is a common antiepi- except for muscular stiffness. It has not been as
leptic used in autistic patients. Side effects include widely studied, however.
sedation and nausea. In rare cases, however, Depa- Seroquel (quetiapine) has many of the same
kote can cause liver damage, so close attention must effects as Risperdal with the same side effects,
be paid to the drug levels in the bloodstream. except that patients are less likely to gain weight on
Tegretol (carbamazapine) is equally as effective this drug. However, this medication has not been
as Depakote, but it can cause a skin rash and bone widely studied in individuals with autism.
marrow problems; for this reason, regular blood
tests are required. Side Effects
Neurontin (gabapentin) and Lamictal (lamotrig-
In addition to the side effects mentioned above,
ine) are other medications that show potential to
other side effects of antipsychotics may include
help patients with autism but have not been stud-
anxiety, fatigue, headache, and insomnia.
ied sufficiently to be recommended for use with
children. They appear to provide the same benefits
as Depakote, as well as the same side effects, but
insufficient data exist on their overall effect. aphasia The loss or diminished ability to use or
understand words, affecting speaking as well as
reading or writing skills. Aphasia, ranging from
antihypertensives Medications, prescribed to mild to severe, can be common in individuals with
treat high blood pressure, that have shown prom- severe autism.
ise in treating aggressive behaviors in patients with
autism. Although experts are not sure how these
medications work, for some children they do stem applied behavior analysis (ABA) A form of ther-
aggressiveness and emotional outbursts. apy based on the theory that behavior rewarded is
Of the antihypertensives, Inderal (propranolol) more likely to be repeated than behavior ignored.
and Visken (pindolol) both seem to lessen aggres- DISCRETE TRIAL TRAINING is part of this approach.
sion and explosions. Their side effects include ABA is a process of systematically applying inter-
sedation, aggravation of asthmatic symptoms, and ventions based on the principles of learning theory
lightheadedness or fainting due to a drop in blood to improve reading, academics, social skills, commu-
pressure. A physician should be consulted if signs of nication, and ADAPTIVE LIVING SKILLS. This approach
low blood pressure appear. generally involves therapists who work intensely,
one-on-one with a child for 20 to 40 hours a week.
In a simple step-by-step manner, therapists teach
antipsychotics One of the main drug classes pre- skills such as identifying colors. The sessions usually
scribed for the treatment of autism, which can help begin with formal, structured drills, such as learning
apraxia of speech 7

to point to a color when its name is given; and then, ABA programs are most effective when started
after some time, there is a shift toward generalizing before age five, but they also can be helpful to older
skills to other situations and environments. children. They are especially effective in teaching
The one-on-one, individualized programs of nonverbal children how to talk. Most experts agree
applied behavior analysis break down learning tasks that behavioral interventions involving one-on-one
into the smallest, most basic parts, and build upon interactions are usually helpful, sometimes bring-
them incrementally. Differences between programs ing very positive results. With older individuals,
can be significant. ABA is often used to teach ADAPTIVE LIVING SKILLS.
Educational/behavioral therapies are often effec- Therapists should prompt as much as necessary to
tive in children with autism; ABA is usually the most achieve a high level of success, with a gradual fading
effective. These methods can and should be used of prompts. There must be proper training of thera-
together with biomedical interventions, as together pists, ongoing supervision, and regular team meet-
they offer the best chance for improvement. ings to maintain consistency among therapists and
ABA methods are used to support persons with check for problems. To ensure adequate training,
autism to experts recommend that clinicians overseeing ABA
be board-certified behavior analysts. Most impor-
• increase behaviors tantly, the sessions should be fun for the children in
• teach new skills order to maintain their interest and motivation.
• teach self control and self-monitoring procedures The effectiveness of ABA-based interventions
with persons with autism is well documented, with
• generalize or to transfer behavior from one situ-
more than 30 years of research studies. Parents are
ation or response to another
encouraged to be trained in ABA so they can pro-
• restrict or narrow conditions under which inter- vide the therapy themselves as well as hire other
fering behaviors occur people to help.
• reduce self injury or unnecessary repetition of
movements
apraxia Loss of the ability to coordinate, sequence,
Parents, siblings, and friends may play an impor- and execute purposeful movements and gestures
tant role in helping strengthen the development not caused by weakness or paralysis. Experts believe
of children with autism. Typical preschool chil- that apraxia is caused by damage to the cerebral
dren learn primarily by play, and the importance cortex, including problems in development of the
of play is critical in teaching language and social cortex in certain developmental disorders such as
skills. Ideally, many of the techniques used in RETT DISORDER. Apraxia may affect any voluntary
ABA, SENSORY INTEGRATION, and other therapies movements, such as those needed for eye gaze,
can be extended throughout the day by family and walking, or speaking.
friends. See also APRAXIA OF SPEECH.
In one study of ABA published by autism expert
Ivar Lovaas at UCLA in 1987, trained graduate stu-
dents worked for two years of intensive, 40 hours apraxia of speech A neurologically based speech
per week behavioral intervention with 19 young disorder that may occur in people with autism.
autistic children ranging from 35 to 41 months of A person with this disorder has trouble planning
age. Almost half of the children improved so much and producing the precise, highly refined and
after the ABA therapy that they were indistinguish- specific series of movements of the tongue, lips,
able from typical children, and these children went jaw, and palate that are necessary for intelligible
on to lead fairly normal lives. Of the other half, speech. Apraxia of speech also may be called ver-
most had significant improvements, but a few did bal apraxia, developmental apraxia of speech, or
not improve much. verbal dyspraxia.
8 Asperger, Hans

Symptoms and Diagnostic Path the individual child’s needs. There is no one “pro-
Research suggests that up to nine percent of chil- gram” that is right for every child with apraxia.
dren with autism will never develop speech; of Children with apraxia of speech reportedly do
those who do speak, 43 percent begin to talk by not progress well in their actual speech production
the end of their first year, 35 percent begin to talk with therapy tailored for other articulation prob-
sometime between their first and second year, and lems or with language stimulation approaches.
22 percent begin to talk some time during their Additionally, in young children the motor/sensory
third year or after. Only 12 percent are totally non- techniques and drills should be woven into play.
verbal by age five. With appropriate interventions, Children with apraxia need frequent one-on-one
there is reason to hope that children with autism therapy and lots of repetition of sounds, sound
can learn to talk, at least to some extent. sequences, and movement patterns in order to
In typical speech/language development, the incorporate them and make them automatic.
child’s receptive and expressive skills develop at Many therapists recommend the use of sign lan-
the same time. A child with apraxia of speech gen- guage, picture books, and other means to augment
erally experiences a wide gap between receptive speech in the child who is not clearly understood.
and expressive language abilities, so that the child’s This approach may be called “total communica-
ability to understand language (receptive ability) tion.” Having the child pair a vocal word attempt
may be normal, but expressive speech is seriously with a sign enhances the chance that the listener
unclear, deficient, or completely absent. will be able to “catch” the communication (if the
spoken word is not understood, perhaps the sign
Treatment Options and Outlook will be). Having others understand the communi-
Children with apraxia of speech can and do cation can offer children motivation and the feel-
improve. The factors that appear to contribute ing of success in using their voice to communicate.
to a prognosis include the individual characteris- Even very young children with apraxia of speech
tics of the child, such as receptive language, cog- are aware of their problem. Providing successful
nitive ability, desire to communicate, attention communication experiences encourages the child.
span, and the age at which appropriate treatment Also, for children with apraxia of speech, signs
is begun (preschool age is best). Also important can become important visual cues to help them
is the existence of other medical, speech and/or know how to place their mouths in order to pro-
language issues, and how much the family is will- duce the desired word. When pairing of spoken
ing to participate in therapy and follow-through. word and sign is consistent, the child may come
With appropriate help, most children with apraxia to associate the visual image of the sign with the
of speech improve their expressive speech ability, placement of their articulators. For this reason, par-
although in some cases the child never really learns ents should not be afraid about using sign language
to speak intelligibly. with their child; children will drop the signs on
A child’s treatment outcome is very difficult their own as their speech becomes understood.
to predict, in part because no two children with Another way parents can help autistic children
apraxia are alike. Treatments that are most effective learn to talk is by using the Picture Exchange Com-
include those that include lots of practice and rep- munication System (PECS), which involves pointing
etition with corrective feedback, a focus on targeted to a set of pictures or symbols on a board. In addi-
oral-motor patterns, sensory input for control of tion, parents can try encouraging the child to sing
the movement sequences, sensory prompts such as with a videotape or audiotape.
visual, touch, and kinesthetic cues, use of rhythm
and melody, and focus on speech sequences versus
individual sounds. Asperger, Hans (1906–1980) Austrian pediatri-
Many experienced speech-language pathologists cian who published the first definition of ASPERGER’S
use an eclectic approach, incorporating several of the SYNDROME (AS) in 1944. At an early age, young Hans
methods mentioned above and using them based on showed special talents in language, and already in
Asperger’s syndrome 9

early school years he was known for his frequent vities, and behaviors. Asperger’s syndrome is
poetic quotations. Considered to be aloof as a child, usually considered a subtype of high-functioning
he earned his medical degree in 1931 and assumed autism but without the delays in cognitive or lan-
directorship of the play-pedagogic station at the uni- guage development. Although the correct mod-
versity children’s clinic in Vienna in 1932. He mar- ern term is Asperger’s disorder, according to the
ried in 1935 and had five children. Diagnostic and Statistical Manual IV-TR (the manual
Asperger had a special interest in “psychically used to diagnose mental conditions), it is also
abnormal” children. He identified a pattern of behav- sometimes called Asperger syndrome or Asperg-
ior and abilities that he saw mostly in boys, including er’s syndrome.
a lack of empathy, little ability to form friendships, The disorder is named after Hans Asperger, a
one-sided conversation, intense absorption in a Viennese pediatrician who first documented this
special interest, and clumsy movements. Asperger cluster of characteristics in the 1940s.
called children with AS “little professors” because of Asperger’s disorder is one of five conditions
their ability to talk about a subject with great detail. grouped under the umbrella category of PERVASIVE
He described the syndrome in a paper submitted for DEVELOPMENTAL DISORDER (PDD) because those with
publication in 1943, based on investigations of more any of the five conditions share a number of charac-
than 400 children with “autistic psychopathy.” teristics: restricted interests and activities that tend
However, since he did not travel widely and all his to be repetitive and impairments in social interac-
publishing was in German, Asperger’s name was tion, imaginative activity, verbal and nonverbal
less known than that of Leo Kanner, who described communication skills. The other four disorders
infantile autism also in 1943. Although Asperger in the PDD group include autism, RETT DISORDER,
was not aware of Kanner’s work on autism, he did CHILDHOOD DISINTEGRATIVE DISORDER, and PERVASIVE
use the word autism in his work. DEVELOPMENTAL DISORDER–NOT OTHERWISE SPECIFIED
In people with Asperger’s syndrome, defi- (PDD-NOS). The umbrella term of pervasive devel-
cits in social interaction and unusual responses to opmental disorders was first used in the 1980s to
the environment, similar to those in autism, are describe this class of disorders with similar symp-
observed. Unlike in autism, however, cognitive and toms or characteristics; Asperger’s was first classified
communicative development are within the normal as a PDD in 1994.
or near-normal range in the first years of life, and Asperger’s was believed to be a milder variant
verbal skills are usually an area of relative strength. of autism, but without the delays in cognitive or
In 1946 he became director of the children’s language development. In 1994 Asperger’s was first
clinic. In 1977 Asperger became professor emeritus, classified as a pervasive developmental disorder (a
delivering his last lecture six days before his death. designation that also includes AUTISTIC DISORDER).
His list of publications includes 359 items, most of Differentiating individuals with this condition
which concern autistic psycopathy and death. from those with high-functioning autism remains
Asperger died before the syndrome that bears his difficult, and experts disagree as to whether they
name became widely recognized. The first person are actually different disorders. Inconsistencies in
to use the term Asperger’s syndrome in a paper was the way the term has been used and the lack, until
Lorna Wing, whose piece was published in 1981. quite recently, of recognized official definitions has
Asperger’s work was not internationally recognized made it difficult to interpret the research available
until the 1990s. on this condition. Even now, some clinicians will use
See also KANNER, LEO. the term to refer to people with autism who have
IQs in the normal range, or to adults with autism, or
to those with PDD-NOS, regardless of whether their
Asperger’s syndrome (AS) A condition charac- early language development was normal, as the
terized by sustained problems with social interac- DSM-IV-TR requires for a diagnosis of Asperger’s dis-
tions and social relatedness, and the development order. Although researchers emphasize differences
of restricted, repetitive patterns of interests, acti- from autism, such as in terms of better communica-
10 Asperger’s syndrome

tion (particularly verbal) skills, the symptoms over- peer relationships. They may have noticeable dif-
lap considerably. The learning profile of individuals ficulty with nonverbal communication, impaired
with Asperger’s disorder is often consistent with a use of social gestures, facial expressions, and EYE
nonverbal learning disability (more difficulties with CONTACT. There may be certain repetitive behaviors
visual-perceptual problem-solving than language- or rituals. Though grammatical, speech is pecu-
based tasks and related social deficits). liar due to abnormal inflection and/or repetition.
Attention problems are often seen in children Clumsiness is common. Individuals with this dis-
with Asperger’s. Sometimes clinicians overlook social order usually have a limited area of interest, such
impairment, and mistakenly diagnose attention as single-minded obsessions about cars, trains, door
deficit hyperactivity disorder (ADHD) rather than knobs, hinges, astronomy, or history, that usually
Asperger’s. Some children with pervasive develop- excludes more age-appropriate, common hobbies.
mental disorders, such as Asperger’s disorder, may Asperger’s vs. autism When compared to autism,
also meet the diagnostic criteria for ADHD. How- Asperger’s disorder usually appears later in life, with
ever, ADHD should only be diagnosed in Asperger’s less severe social and communication problems.
if the ADHD symptoms are more pronounced than Clumsiness and single-minded interests are more
those that could be attributed to Asperger’s. common and verbal IQ is usually higher than perfor-
As all the pervasive developmental disorders mance IQ (in autism, the reverse is usually true). The
(except for Rett disorder) Asperger’s is believed to outcome is usually more positive than for autism.
be more common in boys, although more research Children with Asperger’s disorder have impaired
needs to be done to understand its genetic origins. social interactions similar to those of children with
According to the National Institutes of Health, autism, as well as stereotyped or repetitive behav-
Asperger’s disorder occurs in one out of every 500 iors and mannerisms and nonfunctional rituals.
Americans—more often than multiple sclerosis, However, language skills are normal and sometimes
Down syndrome, or cystic fibrosis. It is estimated superior to those of an average child, although their
that more than 400,000 families are directly affected speech is usually described as peculiar, such as being
by this condition. stilted and focusing on unusual topics. Children with
While biological factors are of crucial importance Asperger’s usually have normal IQ.
in the etiology of autism, so far brain imaging stud- Most of the individuals with Asperger’s syn-
ies with Asperger’s cases have found no consistent drome are interested in having friends, but lack
pattern or evidence of any type of lesion, and no the social skills to begin or maintain a friendship.
single location of any lesion. While high-functioning autistic individuals also
Associated medical conditions such as FRAGILE may be social but awkward, they are typically less
X SYNDROME, tuberous sclerosis, neurofibroma- interested in having friends. In addition, high-
tosis, and hypothyroidism (sluggish thyroid) are functioning autistic individuals are often delayed in
less common in Asperger’s disorder than in classi- developing speech/language.
cal autism. Therefore, scientists suspect there may
be fewer major physical brain problems associated Treatment Options and Outlook
with Asperger’s than with autism. While there is no cure, early intervention has been
proven to be effective. The need for academic and
Symptoms and Diagnostic Path social supports increases through the school years,
Often there are no obvious delays in language or and by adolescence many children develop symp-
cognitive development, or in age-appropriate self- toms of depression and anxiety. It is important to
help skills. While these individuals may possess continue supports into adulthood to ensure affected
attention deficits, problems with organization, and adults can lead productive lives.
an uneven profile of skills, they usually have aver- Symptoms can be managed using individual psy-
age and sometimes gifted intelligence. chotherapy to help the individual to process the feel-
Individuals with Asperger’s syndrome may have ings aroused by being socially handicapped. Other
problems with social situations and in developing treatments may include parent education and train-
assistive augmentative communication 11

ing, BEHAVIORAL MODIFICATION, social skills training, brain function, or include testing designed to iden-
educational interventions, and medication. tify emotional, psychological, and personality fac-
Medical treatments may include the following: tors that may be involved in learning difficulties.
The field of assessment is in a state of continuous
• for hyperactivity, inattention and impulsivity: development in order to discover more accurate
stimulants such as methyphenidate, dextro- methods of evaluating performance and behavior.
amphetamine, methamphetamine, pemoline,
CLONIDINE, and tricyclic antidepressants (DESIP- Types of Autism Assessments
RAMINE, nortriptyline) There are several individual autism assessment
• for irritability and aggression: mood stabilizers tests currently available for use in the United States
(valproate, carbamazepine, lithium), beta-blockers that have been specifically designed to assess chil-
(nadolol, propranolol), neuroleptics (RISPERIDONE, dren with possible autism. All of these tests rely on
HALOPERIDOL) either information about the child’s behavior pro-
• for preoccupations, rituals and compulsions: vided by a parent, direct observation of the child by
antidepressants (FLUVOXAMINE, FLUOXETINE, CLO- a professional, or a combination of these methods.
MIPRAMINE)
The specific autism tests include
• for anxiety: antidepressants (sertraline, fluox- • AUTISM BEHAVIOR CHECKLIST (ABC): a behavior
etine, imipramine, clomipramine, nortriptyline) checklist completed by a parent
• AUTISM DIAGNOSTIC INTERVIEW–REVISED (ADI-R): a
assessment A general term that covers a wide
structured interview
range of activities, instruments, and approaches
involved in evaluating prior performance, describ- • CHILDHOOD AUTISM RATING SCALE (CARS): a test com-
ing present abilities and behaviors, and predicting bining parent reports and direct observation by
future performance and behaviors. “Assessment” the professional
differs from “testing,” which reflects performance • AUTISM DIAGNOSTIC OBSERVATION SCALE (ADOS): a test
on particular tasks at a specific time. Instead, assess- using direct observation of the child’s behavior
ment interprets overall patterns and relationships as elicited by the examiner
among testing results and other observations.
Several standardized tests and checklists have Behavior checklists such as the ABC include lists
been developed to help assess the behavior of of questions completed by parents and later scored
children with possible autism, and can be used in by a professional. Structured interviews (such as
various ways. They can help determine if autism the various versions of the ADI) include a set of
is likely, so that a decision can be made to seek a questions and interviews that professionals use to
specific diagnosis. At other times, they may be used question parents. Tests that rely on direct obser-
as part of the formal diagnostic process. Finally, in vation of the child by a professional (such as the
certain instances some of these instruments may be PL-ADOS) often outline specific ways for the
used to rate the severity of symptoms, which may examiner to elicit responses from the child. These
help assess interventions, periodic monitoring of tests also have a standardized method for scoring
the child’s progress, and outcomes. the observed behaviors. CARS combines both his-
A neuropsychological assessment might include torical information from a parent and direct obser-
a more comprehensive group of tests designed to vation of the child by the professional; CARS also
identify functioning in specific areas, such as mem- provides a total score that can rate the severity of
ory or visual processing. In most cases, such stan- behavior.
dardized testing is used together with case histories,
interviews, and details on actual performance at
school, among friends, and at home. Assessment assistive augmentative communication Any sym-
may also incorporate testing in specific areas of bol system of communication that relays a message
12 Assistive Technology Act of 1998

and that can be used to add to more typical forms of attention deficit disorder (ADD) A condition that
communication when these methods are impaired. is sometimes used to describe attention problems in
This might involve using unaided methods, such as the absence of hyperactivity. ADD is no longer a
gestures or American Sign Language, or aided tech- recognized medical term; the medical community
niques, such as alphabet or picture boards. A per- now refers to ADD as attention deficit hyperactivity dis-
son communicates using these boards by “pointing” order, primarily inattentive subtype, as opposed to the
to each letter or picture, either with a finger or eye more common ADHD, combined subtype or ADHD,
gaze (where the person looks at the word or picture primarily impulsive/hyperactive subtype.
he wants to communicate).
The more complex methods are electronic aids
or recorded messages activated by buttons—some atypical autism A general term for conditions that
of which rely on complex electronic computer are close to but do not quite fit the set of conditions
technology, also called speech generating devices of autism or other specific conditions.
(SGD), voice output communication aids (VOCA), See also PERVASIVE DEVELOPMENTAL DISORDER–NOT
or voice output devices. OTHERWISE SPECIFIED.

Assistive Technology Act of 1998 This law, also atypical learner A general term for a child who
known as P.L. 105-394, replaced the Technology- is different from the typical student in physical,
Related Assistance for Individuals with Disabilities intellectual, social, or emotional development, and
Act of 1988. This act addresses the assistive-tech- who differs in mental characteristics, sensory abili-
nology needs of individuals with disabilities. ties, communication abilities, or social behavior
to the extent that SPECIAL EDUCATION services are
required.
attention The focus of consciousness on some-
thing in the environment, or on a sensation or an
idea. The length of time a child can pay attention to auditory integration training (AIT) A somewhat
something (the attention span) increases with age, controversial treatment method used with people
interest, and intelligence level. Attention includes a who have auditory processing problems, which
number of elements which are essential to all activ- reduces sensitivity to specific sound frequencies.
ities, including the following: The treatment is used to help people with autism,
dyslexia, attention deficit hyperactivity disorder
• arousal: being ready to receive stimuli (ADHD), vestibular processing problems, and read-
ing problems. About 40 percent of autistic children
• vigilance: being able to select stimuli from those
are reported to show very sensitive hearing. Audi-
presented over a period of time
tory training is designed to overcome the hyper-
• persistence or continuity: being able to sustain a sensitivity.
mental effort and select stimuli that are pre- The training was developed by French otolaryn-
sented often gologist Guy Bérard, who believes that abnormal
• monitoring: checking for and correcting errors auditory processing occurs when there is a discrep-
ancy between how well someone hears different
Breakdowns in these different elements can sound frequencies. For example, a person with
cause a variety of problems. A breakdown in vigi- auditory processing problems may be hypersensi-
lance, for example, might cause someone to select tive to the frequencies 2,000 and 8,000 Hertz, but
or focus on the wrong details. A breakdown in hear all the other frequencies normally. Auditory
monitoring might lead to repeated careless errors. processing problems seem to be linked to a defect in
Persistence or continuity is necessary for a complex the brainstem’s reticular activating system, respon-
task to be completed. sible for regulating information from the auditory
auditory processing disorder 13

and vestibular systems and focusing on certain posed to train the child to filter out unimportant
types of sensory input. sounds in order to focus on certain frequencies.
Researchers who believe that AIT is effective sus- It works by allowing a sound-sensitive child to
pect that many children diagnosed with autism and adapt to sounds. Adaptation is a built-in mecha-
other problems have an AUDITORY PROCESSING DIS- nism, which after continued exposure to a stimu-
ORDER. This condition is particularly common if the lus reduces the perception of that stimulus. This
child has SENSORY INTEGRATION DYSFUNCTION, such may result in better sound discrimination. Because
as touch sensitivity. AIT is thought to help improve the vestibular system is also integrated in this part
attention span deficits, to correct poor auditory dis- of the brain, the unique sounds used in AIT also
crimination skills, and to improve the ability to fol- may produce better posture, balance, and spatial
low directions, all of which are common problems orientation.
in autistic children. To be effective, the music used for AIT should
Other experts believe that dyslexia may also cover a wide range of frequencies and have a good
affect the auditory processing system. Brain scans of tempo or beat. Most music does not meet these cri-
dyslexic people show fewer neurons on the left side teria. AIT experts have reviewed more than 1,000
of the medial geniculate nucleus, one of the most CDs and created a list of 70 CDs that can be used
important parts of the auditory system and an area in AIT training—mostly jazz, pop, reggae, and con-
that processes fast-changing sounds. AIT focuses on temporary rock. Very few classical pieces fit the
training the child to improve discrimination of this requirements.
type of sound.
Effectiveness
The Training Process Current research has not proven the benefits of
The first step in AIT is to schedule an audiogram this treatment. Studies into the effectiveness of the
to determine whether the person has auditory sen- training have been inconclusive; some research-
sitivity. After the first five hours of treatment, the ers using anecdotal studies have found benefit and
child will get a second audiogram to determine if others have not. There have been no controlled
the sensitivities are still present and whether new studies supporting AIT. Since the training is not
sensitivities have developed. A final audiogram invasive, however, some experts believe there is
is given after the completion of the listening ses- little to be lost by trying the approach. Although
sions. The goal of the training is that all frequencies the treatment period is short (just two weeks), it is
should be perceived equally well and the sensitivi- expensive (on average, about $2,000). Because of
ties should be eliminated. the lack of research supporting its efficacy, the ethi-
The training begins with twice-a-day, 30-min- cal guidelines of the American Speech/Language/
ute sessions for 10 days. During the first five hours Hearing Association prohibit clinicians from charg-
of training, each ear receives the same sound ing money for this experimental treatment.
level input. For children with a speech or hear- AIT is not without problems. Some patients
ing impairment, the sound level is reduced in the report behavior changes, including agitation, hyper-
left ear during the second five hours of training. activity, and rapid mood swings. Experts do not
The left hemisphere is responsible for processing know why, but this type of reaction occurs with
speech and language; since the right ear is con- other forms of sensory integration training as well.
nected more directly to the left hemisphere, a Many children become less compliant, perhaps as
higher sound level in the right ear will stimulate a result of a tendency to become overfocused and
the left hemisphere. Using a cassette or CD player, hence, more reluctant to change tasks.
the child listens to unpredictable, modulated music
that has been specially processed. This is believed
to stimulate the reticular activating system. If the auditory processing disorder (APD) Difficulty in
child is sensitive to certain frequencies, these fre- processing information is a common problem for
quencies are filtered out. The special music is sup- individuals with autism. An auditory processing
14 auditory processing disorder

disorder is a complex problem that occurs in the The better autistic children understand auditory
brain system responsible for recognizing and inter- information, the better they can comprehend their
preting sounds, so that the person may not recog- environment, both socially and academically.
nize slight differences between word sounds, even
though the sounds themselves are loud and clear. Symptoms and Diagnostic Path
One auditory processing problem occurs when People with auditory processing difficulty typically
a person hears speech sounds but does not per- have normal hearing and intelligence. However,
ceive the meaning. For example, if someone says they may have
the word “horse,” the person may hear the speech
sound, but does not understand the meaning of the • attention and memory problems related to oral
sound. APD is also called central auditory process- information
ing disorder, auditory perception problem, auditory • poor academic performance
comprehension deficit, central auditory dysfunc-
• problems with multistep directions
tion, central deafness, or word deafness. These
kinds of problems are more likely if there is a lot • poor listening skills
of background noise, or if the person with APD is • behavior problems
listening to complex information. • need for more time to process information
Although the lack of speech comprehension
• confusion over syllable sequences and prob-
may be misinterpreted as an unwillingness to com-
lems developing vocabulary and understanding
ply, in fact the person with autism may not be able
language
to understand the meaning of words at that par-
ticular time. • problems with reading, comprehension, spell-
Scientists still do not understand exactly how ing, and vocabulary
attention, memory, and sensory interpretation
interact, or how they malfunction in cases of audi- A teacher or pediatrician may be the first per-
tory processing disorders. In particular, experts do son to notice symptoms of an auditory processing
not understand the underlying cause of auditory disorder in a child. A doctor can help rule out pos-
processing problems in autism, but autopsy research sible diseases that can cause some of these same
has shown that an area in the limbic system called symptoms. To determine whether the child has a
the hippocampus is not well developed in autistic functional hearing problem, an audiologist will
individuals. The hippocampus is responsible for administer tests to determine the softest sounds
sensory processing as well as learning and memory. and words a person can hear and how well people
Information is transferred from the senses to the can recognize sounds in words and sentences.
hippocampus, where it is processed and then trans- A speech-language pathologist can find out how
ferred to areas of the cerebral cortex for long-term well a child understands and uses language. The
storage. Since auditory information is processed in audiologist (who helps with functional problems of
the hippocampus, the information may not be prop- hearing and processing) and the speech-language
erly transferred to long-term memory in autistic pathologist (focused on language) may work as a
individuals. team with a child.
Auditory processing problems also may be linked
to several autistic characteristics. Autism is some- Treatment Options and Outlook
times described as a social-communication prob- Several strategies are available to help children with
lem. Processing auditory information is a critical auditory processing difficulties, including:
component of social communication. Other charac-
teristics that may be associated with auditory pro- • auditory trainers: electronic devices that allow a
cessing problems include anxiety or confusion in person to focus attention on a speaker and reduce
social situations, inattentiveness, and poor speech the interference of background noise, often used
comprehension. in classrooms where the teacher wears a micro-
autism, late onset 15

phone to transmit sound and the child wears first year of life, and one-third regressed sometime
a headset to receive the sound. Children who after age one. Starting in the 1980s, the trend has
wear hearing aids can use them in addition to reversed, so that today fewer than one-third are
the auditory trainer. now early onset and two-thirds become autistic
• environmental modifications: arranging classroom in their second year. Some experts believe these
acoustics, placement, and seating results suggest that something happens between
ages one and two (such as increased exposure to an
• exercises: methods that can boost language-build- environmental toxin).
ing skills, increasing the ability to learn new See also AUTISM, LATE ONSET.
words and improve a child’s language base
• auditory memory enhancement: techniques that help
children learn to condense complex information autism, late onset The appearance of autistic
into a simpler form that is easier to remember symptoms at between 12 and 24 months of age,
after an apparently normal developmental period.
About two-thirds of children with autism do not
augmentative communication A method of com- exhibit any symptoms until about age two, reversing
munication used with people with autism, in which a trend through the 1980s in which most children
the spoken word is combined with the presentation with autism showed symptoms at an early age.
of photographs, symbols, or gestures to help the Today, many parents report that their child
person make his needs, feelings, and ideas known. seemed to develop normally from birth to about
See also ASSISTIVE AUGMENTATIVE COMMUNICATION. age one or two, and then suddenly began to regress
until eventually autism was diagnosed. Although
some researchers argue that the regression is not
autism See AUTISTIC DISORDER. real or that congenital autism was simply unnoticed
by the child’s parents, many parents do report that
their children had demonstrated completely nor-
autism, early onset Children whose symptoms of mal speech, behavior, and social skills until some
autism appear during the first year of life. (Children time between one and two years of age.
whose symptoms appear between ages one and two One recent study compared 53 autistic children
are referred to as having “late-onset” or “regressive” with 48 typical peers. The parents of the early-
autism. Although some researchers argue that the onset autism group reported a significant delay in
regression is not real or that congenital autism was reaching developmental milestones, including age
simply unnoticed by the child’s parents, many par- of crawling (a two-month delay), sitting up (two-
ents do report that their children had completely month delay), walking (four to five month delay),
normal speech, behavior, and social skills until some and talking (11-month delay or more). In contrast,
time between one and two years of age.) the late-onset autism group reached developmental
One recent study compared 53 autistic children milestones at the same time as typical children up
with 48 typical peers. The parents of the early- to the appearance of their autistic symptoms.
onset autism group reported a significant delay in Prior to 1990, about two-thirds of children with
reaching developmental milestones, including age autism experienced symptoms early, and one-third
of crawling (a two-month delay), sitting up (two- regressed sometime after age one year. Starting in
month delay), walking (four- to five-month delay), the 1980s, the trend has reversed, so that today
and talking (11-month delay or more). In contrast, fewer than one-third show early onset and two-
the late-onset autism group reached developmental thirds become autistic in their second year. Some
milestones at the same time as typical children up experts believe these results suggest that some-
to the appearance of their autistic symptoms. thing happens between ages one and two (such as
Prior to 1990, about two-thirds of children increased exposure to an environmental toxin).
with autism had noticeable symptoms during the See also AUTISM, EARLY ONSET.
16 Autism and Developmental Disabilities Monitoring Network

Autism and Developmental Disabilities Monitoring where 55,000 babies are born each year, but it
Network (ADDM) A group of 10 different projects could expand to include Pima County.
that are developing or improving programs to track In the 2000–01 school year, 1,213 Arizona stu-
the number of children with autistic spectrum disor- dents had autism and received special education
ders (ASDs), funded by the Centers for Disease Con- services. That number was 0.14 percent of the
trol and Prevention (CDC). The goal of the ADDM 893,334 children enrolled in Arizona public schools
network is to provide comparable, population-based on October 1, 2000.
estimates of the prevalence rates of autism and The investigators of this study are members of
related disorders in different sites over time. The 11 the Department of Pediatrics and College of Public
states that are part of the ADDM network are Ala- Health at the University of Arizona.
bama, Arizona, Arkansas, Florida, Missouri/Illinois,
New Jersey, South Carolina, Utah, West Virginia, Arkansas
and Wisconsin. The Arkansas Autism Project is designed to identify
and track the number of children in Arkansas with
Alabama ASDs to help establish how many Arkansas children
The Alabama Autism Surveillance Program (AASP) actually have autism. The entire state of Arkansas
takes place in different sites around the state in an is included in this monitoring project, although at
attempt to monitor the number of children born in first, most attention will be directed to the larger
1994 who lived in Alabama in 2002 and who had school districts in the state and children seen at
a diagnosis of AUTISM SPECTRUM DISORDER, MENTAL the autism clinic at the University of Arkansas for
RETARDATION, and/or cerebral palsy. This surveil- Medical Science (UAMS) Department of Pediatrics.
lance system will provide the first steps in establish- This project will initially focus on children eight
ing an accurate count of the number of children years of age, with plans to include children from
in Alabama with these developmental disabili- three through ten years of age.
ties. The investigators are members of the Depart- Although currently there is no accurate count
ment of Maternal and Child Health of the School of the number of Arkansas children with autism,
of Public Health at the University of Alabama at the Arkansas Autism Society works with about 700
Birmingham. children and families within the state. The Arkansas
The study began with the northern 32 counties Department of Education has seen an increase in
in Alabama, but could expand to cover the entire the number of children receiving services who are
state. About 36,000 babies are born in this area classified as having autism. In the 2002–03 school
each year. This study initially focused on children year, 109 eight-year-olds (about three in 1,000) are
eight years of age, with plans to include children being served in the public school system.
from ages three through 10 years. The Arkansas Autism Society provides informa-
In the 2001–02 school year, 1,233 Alabama stu- tion about autism and forms the basis for support
dents were classified as having autism and received groups for the families of children with autism. An
special education services. That number was 0.17 autism clinic at the Dennis Development Center at
percent of the 731,095 children enrolled in Ala- UAMS provides diagnostic evaluations for children.
bama public schools on December 1, 2002. The investigators for this study are members of the
University of Arkansas for Medical Sciences, work-
Arizona ing in collaboration with the CDC and the Arkansas
The Arizona Autism Spectrum Surveillance Pro- Department of Health.
gram (AASSP) takes place in different sites around
the state in an attempt to monitor the number of Florida
children with an ASD. This five-year epidemio- The University of Miami Autism and Developmental
logic study will help establish, for the first time, an Disabilities Monitoring project is a study coordinated
accurate count of the number of Arizona children with the Florida Department of Health to monitor the
with autism. The study began in Maricopa County, number of children with an ASD in south Florida,
Autism and Developmental Disabilities Monitoring Network 17

which will help establish for the first time an accurate other parts of the state. There are about 35,000
count of the number of south Florida children with babies born in this four-county area each year.
autism. The project will initially focus on Miami-Dade During the 2001–02 school year, 3,526 New Jersey
County, where about 32,000 babies are born each students with autism were given special education
year. The study includes children four through eight services. In 1998, one CDC study found that 6.7 of
years of age. During the 2000–01 school year, there every 1,000 children in Brick Township (in Ocean
were 4,971 students with autism receiving special County) had an ASD.
education services, with 1,120 students receiving ser- The investigators are members of the Depart-
vices in Miami-Dade County. During the 1999–2000 ment of Pediatrics at the New Jersey Medical School
school year, the prevalence of autism in Miami-Dade who are working with the CDC, the New Jersey
County was 2.7 per 1,000 students. State Department of Education, and the New Jersey
Investigators are members of the University of Governor’s Council on Autism.
Miami Department of Psychology, in association
with the University of Miami, Center for Autism South Carolina
and Related Disabilities. The South Carolina Developmental Disabilities
Surveillance Program is a population-based study
Missouri/Illinois that will include information from a variety of
The Missouri/Illinois Autism and Developmental sources to establish the rate of ASDs in the east-
Disabilities Monitoring project takes place in differ- ern half of the state, along the Coastal and Pee Dee
ent sites around the state in an attempt to monitor regions, including 23 counties. About 25,000 babies
the number of children with ASD, mental retarda- are born in this area each year. The investigators
tion, or both, and to determine how many children are members of the Departments of Pediatrics and
with ASD or mental retardation have epilepsy. This Epidemiology and College of Health Professions at
research will establish an accurate count of children the Medical University of South Carolina. During
with these disabilities in the metropolitan St. Louis the 2000–01 school year, the State Department of
area. The project will include eight counties in the Education reported serving 973 South Carolina stu-
St. Louis metropolitan area: St. Louis, St. Louis City, dents with autism. Although the exact number of
St. Charles, Franklin, and Jefferson (in Missouri) and people with autism is not known, the South Caro-
Madison, St. Clair, and Monroe (in Illinois), where lina Autism Division knows of 1,682 persons with
33,000 live births occur a year. In the 2001–02 school autism living in the state.
year, Missouri served 2,051 students and Illinois
served 5,175 students with autism. In 2001–02, 1,102 Utah
students within the metropolitan St. Louis area were The Utah Registry of Autism and Developmental
identified by their school system as having autism. Disabilities is a population-based project that will
The investigators are members of the School of monitor the number of children in Utah with ASDs
Medicine at Washington University, and the study and mental retardation. The primary focus of the
is a joint program with the CDC, the Missouri project is a CDC-sponsored public health registry
Department of Health and Senior Services, Illinois of eight-year-old children with ASDs or mental
Department of Public Health, and many other agen- retardation centering on Davis, Salt Lake, and Utah
cies and organizations that serve children with ASD Counties, where about 70 percent of Utah’s inhabit-
and their families. ants live. At the same time, the Utah Department
of Health will develop a self-reporting registry to
New Jersey include all ages in the entire state. About 33,000
The New Jersey Autism Study is trying to monitor babies are born in the three-county area each year
the number of eight-year-old children in New Jer- (about 47,000 in the entire state), and during the
sey with an ASD with this multi-year epidemiologic 2001–02 school year, the Utah Office of Education
study. The study includes Essex, Union, Hudson, reported serving 830 students with autism. The
and Ocean counties, but may expand to include UCLA–University of Utah Epidemiologic Survey of
18 autism behavior checklist

Autism Prevalence Study in 1983 estimated the inci- ern Wisconsin (Kenosha, Racine, Milwaukee, Ozau-
dence rate of autism in Utah to be four in 10,000. kee, Waukesha, Jefferson, Rock, Dane, Green, and
The researchers are members of the Utah Depart- Walworth) but could expand to include the entire
ment of Health’s Children with Special Health Care state. About 33,000 babies are born in these counties
Needs Bureau and the University of Utah School of each year, and about half of the state’s population
Medicine’s Department of Psychiatry. The study is live here.
working together with the CDC, the Utah Depart- In the 2002–03 school year, 3,083 of Wisconsin’s
ment of Health, and the University of Utah School 881,231 public school students had autism and
of Medicine’s Department of Psychiatry. received special education services, while 12,750
Other ASD programs in Utah include the Autism had some type of cognitive disability. The number
Society of Utah; the Utah Parent Center; the Car- of Wisconsin children receiving special education
men B. Pingree School for Children with Autism; services for autism tripled from 1997 to 2002. It is
the Utah Department of Health’s Children with clear more people are being identified with an ASD
Special Health Care Needs Bureau; the Utah Divi- now than in the past, but public health profession-
sion of Services for People with Disabilities; the als do not know how common these disorders are
University of Utah’s Child, Adolescent, and Young in Wisconsin, or whether the increase in the num-
Adult Specialty Clinic; and the University of Utah’s ber of children identified with ASDs is due to better
Neurobehavior Clinic. diagnosis or true increases.
The Waisman Center of the University of
West Virginia Wisconsin–Madison and the Medical College of Wis-
The West Virginia Autism Study is an investiga- consin offer programs dedicated to developmental
tion to determine and monitor the number of disabilities research, diagnosis, and treatment.
children born in 1992 with an ASD who lived in This project is a collaboration between the Wis-
West Virginia in 2000, when they were eight years consin Department of Health and Family Services
old. The entire state of West Virginia is included and investigators from the Waisman Center and
in the study, where about 30,500 babies are born Department of Population Health Sciences of the
each year. During the 2000–01 school year, there University of Wisconsin–Madison. The study is
were 326 students with autism who were receiving a joint undertaking with the CDC, the Wisconsin
special education services in West Virginia. A pilot State Department of Public Instruction, and many
study conducted in 1999–2000 in a six-county area other agencies and organizations that serve children
found that nearly 21 of every 10,000 children aged with developmental disabilities and their families.
three to 21 years had an ASD. The investigators
are members of the West Virginia Autism Training
Center in the College of Education and Human Ser- autism behavior checklist (ABC) Screening ques-
vices at Marshall University. tionnaire for autism that is completed by a parent.
This checklist is an individual autism assessment
Wisconsin instrument specifically designed to screen chil-
The Wisconsin Surveillance of Autism and Other dren for possible autism; it is currently available
Developmental Disorders System takes place in dif- for use by U.S. clinicians. This screening measure
ferent sites around the state in an attempt to moni- relies on historical information about the child’s
tor the number of eight-year-old children with an behavior (usually provided by a parent). Tests
autism spectrum disorder, mental retardation, or that rely on historical information may be in the
both and to determine how many children with form of behavior checklists. The ABC is a type of
ASD or mental retardation have epilepsy. This sur- behavior checklist that includes lists of questions
veillance system will help establish for the first time to be completed by parents and later scored by a
an accurate count of the number of Wisconsin chil- professional.
dren and families affected by these disorders. The The ABC was first published in 1980 and is part of
study will initially include 10 counties of southeast- a broader tool called the AUTISM SCREENING INSTRU-
autism diagnostic observation scale 19

MENT FOR EDUCATIONAL PLANNING–SECOND EDITION The ADI-R is useful for formal diagnosis as well
(ASIEP-2). The ABC is designed to be completed inde- as treatment and educational planning. It can help
pendently by a parent or a teacher familiar with the clinicians to differentiate autism from other devel-
child, who then returns it to a trained professional opmental disorders and in assessing syndrome
for scoring and interpretation. Although it is primar- boundaries.
ily designed to identify children with autism within To administer ADI-R, an experienced clinical
a population of school-age children with severe dis- interviewer questions a parent who is familiar with
abilities, the ABC has been used with children as the developmental history and current behavior of
young as three years of age. the child being evaluated. Composed of 93 items,
The ABC has 57 questions divided into five cat- the ADI-R focuses on three functional domains—
egories: language and communication, reciprocal social
interactions, and restricted, repetitive, and stereo-
• sensory typed behaviors and interests.
• relating Interview questions cover eight content areas,
including the subject’s background (including fam-
• body and object use
ily, education, previous diagnoses, and medica-
• language tions), an overview of the subject’s behavior, early
• social and self-help development milestones, language acquisition and
loss of language or other skills, current language
The ABC appears to have limited usefulness in function, social development and play, and inter-
identifying children with autism who are under the ests and behaviors.
age of three. When used in conjunction with other The ADI-R may be useful as part of a multidis-
diagnostic instruments and methods, the ABC may ciplinary intake assessment in diagnosing young
have some usefulness as a symptom inventory to be children with possible autism. Because of the time
completed by parents or teachers. needed to administer the ADI-R and the extensive
training needed, this test may not be a practical
assessment method in all clinical situations.
Autism Diagnostic Interview–Revised (ADI-R) A A structured parent interview such as the ADI-
diagnostic semi-structured interview for a clinician R can help get the most out of a parent’s ability
to use to help diagnose children suspected of having to remember, but it is not a substitute for direct
AUTISTIC DISORDER or a PERVASIVE DEVELOPMENTAL observation of the child by a professional. Experts
DISORDER. The original version of this test (Autism agree it is important to supplement structured
Diagnostic Interview) was published in 1989 and parent interviews with direct observation of the
was intended primarily for research purposes, pro- child.
viding behavioral assessment for subjects with a
chronological age of at least five years and a mental
age of at least two years. autism diagnostic observation scale (ADOS) A
The ADI-R, published in 1994, is shorter and semi-structured assessment of communication, social
more appropriate for younger children than the interaction and play or imaginative use of materials
ADI. It is appropriate for children with mental ages for individuals suspected of having autism or other
from about 18 months into adulthood, and is linked AUTISM SPECTRUM DISORDERS. This assessment is used
to the criteria found in the DIAGNOSTIC AND STATISTI- to diagnose young children under the age of six years
CAL MANUAL IV-TR. The ADI-R takes from one and a who are not yet using phrase speech. It is a semi-
half to two hours to administer. structured assessment of play, interaction, and social
Both the ADI and the ADI-R focus on the three communication and takes about 30 to 60 minutes for
key areas defining autism: reciprocal social interac- a trained clinician to administer. The ADOS may be
tion, communication and language, and repetitive, useful as part of an initial assessment in diagnosing
stereotyped behaviors. young children with possible autism, but extensive
20 Autism Screening Instrument for Educational Planning–Second Edition

training is needed to learn how to administer it. It is a way to assess children who are difficult to test and
combination of several earlier research instruments: treat.

• the autism diagnostic observation schedule


(intended for adults and children with language autism spectrum disorders (ASD) A relatively
skills at a minimum of the three-year-old level) new term that encompasses autism and simi-
lar disorders that is gradually replacing the term
• another version with additional items developed
pervasive developmental disorders. This group of
for verbally fluent, high-functioning adolescents
and adults disorders is characterized by varying degrees of
problems with communication skills, social inter-
• a pre-linguistic version intended for children actions, and restricted, repetitive and stereotyped
with limited or no language patterns of behavior. The autism spectrum disor-
ders include

Autism Screening Instrument for Educational • ASPERGER’S SYNDROME, which tends to include
Planning–Second Edition (ASIEP-2) A screening milder symptoms
test, appropriate for age 18 months through adult-
• AUTISTIC DISORDER, which is typically a more
hood, designed to help professionals identify indi-
severe disorder
viduals with autism and to provide information
needed to develop appropriate educational plans. • PERVASIVE DEVELOPMENTAL DISORDER–NOT OTH-
This instrument also helps professionals develop ERWISE SPECIFIED, a condition with very minor
appropriate instructional plans in accordance with symptoms or symptoms that otherwise do not
P.L. 94-142. It can also be used to distinguish meet the specific criteria for other autism spec-
between autism and other disorders. trum disorders.
The scale looks at five aspects of behavior, which
together provide a clear picture of the individu- Two other rare, very severe disorders that are
al’s functional abilities and instructional needs. It included in the autism spectrum disorders are RETT
includes five subtests: DISORDER and CHILDHOOD DISINTEGRATIVE DISORDER.
(More recently, many experts tend to exclude Rett
• AUTISM BEHAVIOR CHECKLIST: sensory, relating, body disorder from the autism spectrum disorders.)
concept, language, and social self-help behaviors In 1943 Dr. Leo KANNER of the Johns Hop-
• sample of vocal behavior: spontaneous verbal kins Hospital introduced the term “early infantile
behavior autism” after studying a group of 11 children with
unusual symptoms. At the same time, German sci-
• interaction assessment: social interaction based on
entist Dr. Hans ASPERGER described a milder form
observable behaviors
of the disorder that became known as Asperger’s
• educational assessment: language performance and syndrome. These two disorders were the first of the
communicative abilities through signed or ver- five ASDs to be identified.
bal responses The ASDs are more common in children than
• prognosis of learning rate are some better-known disorders such as diabetes,
spina bifida, or DOWN SYNDROME. Prevalence studies
The entire test can be given by a school psycholo- in the United States, the United Kingdom, Europe,
gist or experienced teacher of autistic children in and Asia suggest that ASD occurs in from two to six
one and a half to two hours. Results can be plot- out of every 1,000 children.
ted on a summary profile to allow the examiner
to compare the child’s performance to patterns Symptoms and Diagnostic Path
expected for autistic children and for children Parents are usually the first to notice unusual behav-
with other handicaps. This provides a systematic iors in their child. In some cases, the baby seems
autism spectrum disorders 21

“different” from birth, unresponsive to people or All children with ASD demonstrate mild to
focusing intently on one item for long periods of severe deficits in social interaction and in verbal
time. In other cases, symptoms do not appear until and nonverbal communication, as well as repetitive
after the first one or two years of life. In most cases, behaviors or interests. In addition, they may have
the problems in communication and social skills unusual responses to sensory experiences, such as
become more noticeable as the child lags further certain sounds or the way objects look. Each child
behind other children the same age. Some other will display communication, social, and behavioral
children start off well enough. Oftentimes between patterns that are individual but fit into the overall
12 and 36 months old, the differences in the way diagnosis of ASD.
they react to people and other unusual behaviors Some parents report the change as being sud-
become apparent. The existence of an autism spec- den, and that their children start to reject people,
trum disorder may be suspected if the child act strangely, and lose language and social skills
they had previously acquired. In other cases, there
• does not babble, point, or make meaningful ges- is a plateau, or leveling, of progress so that the dif-
tures by one year of age ference between the child with autism and other
• does not speak one word by 16 months children the same age becomes more noticeable.
Social symptoms Healthy children are social
• does not combine two words by two years beings, and early in life they will gaze at people,
• does not respond to name turn toward voices, grasp a finger, and smile. In
• loses language or social skills contrast, most children with ASD seem to have
problems interacting with others in their environ-
Some other indicators include ment—even their mother or father. Even in the
first few months of life, some avoid eye contact and
seem indifferent to other people, preferring to be
• poor eye contact alone. They may resist attention or passively accept
• lack of ability to play appropriately with toys hugs; as they get older, they seldom seek comfort
• excessive ordering of toys or other objects or respond to parents’ displays of anger or affection
• attachment to one particular toy or object in a normal way.
This does not mean that children with ASD are
• does not smile in response to other’s smiling not attached to their parents; rather, their expres-
• apparent hearing problems sion of this attachment is unusual and difficult to
interpret. To parents, it may seem as if their child
The first signs of an autism spectrum disorder also does not care about them at all.
can appear in children who seemed to have been Children with ASD also are slower in learning
developing normally. Parents are usually cor- to interpret what others are thinking and feeling,
rect about noticing developmental problems, such failing to understand subtle social cues such as
as when an engaging, babbling toddler suddenly smiles or grimaces. Without the ability to interpret
becomes silent, withdrawn, aloof, or indifferent to gestures and facial expressions, the social world
social overtures. appears confusing to these children.
Pediatricians, family physicians, daycare pro- Moreover, many people with ASD have trouble
viders, teachers, and parents may initially dismiss seeing things from another person’s perspective,
signs of ASD, optimistically thinking the child is which makes it hard or impossible for them to pre-
just a little slow and will “catch up.” Although dict or understand other people’s actions. Many
early intervention has a dramatic impact on people with ASD have trouble regulating their
reducing symptoms and increasing a child’s ability emotions, which results in “immature” behavior
to grow and learn new skills, it is estimated that such as crying or laughing in situations that are out
only 50 percent of children are diagnosed before of context or displaying verbal outbursts that seem
kindergarten. inappropriate to those around them.
22 autism spectrum disorders

Individuals with ASD can be disruptive and children and older individuals spend a lot of time
physically aggressive at times, which can make repeatedly flapping their arms, pacing, or walking
social relationships more difficult. They may lose on their toes, while others suddenly freeze in posi-
control when angry, frustrated, or in a strange tion. Children can spend hours lining up their dolls
or overwhelming environment. They may break in a certain way instead of using them for pretend
things, attack others, or hurt themselves, bang their play; if a toy gets moved, the child may be tremen-
heads, pull their hair, or bite their arms. dously upset. This is because some children with
Communication problems Some children diag- ASD need absolute consistency in their environ-
nosed with ASD remain mute throughout their ment, so that a slight change in any routine can be
lives; others may be delayed but eventually develop extremely disturbing.
language as late as age five to nine years. Some chil- Repetitive behavior sometimes takes the form of a
dren may learn to use communication systems such persistent, intense preoccupation. For example, the
as pictures or AMERICAN SIGN LANGUAGE. child might be obsessed with learning all about dino-
Those who do speak often use language in unusual saurs, train schedules, or clocks. Often there is great
ways, some using only single words, others repeat- interest in numbers, symbols, or science topics.
ing the same phrase over and over. Some children Sensory problems Sensory information helps
with ASD parrot what they hear (ECHOLALIA). people learn from what they see, feel, or hear.
Some children who are only mildly affected may When sensory input is faulty, the child’s experi-
have only slight delays in language, or even preco- ences of the world can be confusing. Many children
cious language and unusually large vocabularies, with ASD are painfully aware of and sensitive to
but have trouble keeping up their end of a conver- certain sounds, textures, tastes, and smells. Some
sation, although they often carry on a monologue children find the feel of clothes touching their skin
on a favorite subject. to be almost unbearable; others cannot tolerate cer-
Many of these children also have trouble under- tain sounds, such as a ringing telephone or the vac-
standing body language, tone of voice, or phrases, uum cleaner. In children with ASD, the brain seems
so that they are unable to interpret sarcasm, for unable to balance the senses appropriately.
example. Body language of children with ASD also On the other hand, some children with ASD are
may be hard to interpret, since facial expressions, oblivious to extreme cold or pain, so that if such a
movements, and gestures rarely match what they child breaks a leg, he may not cry—yet a light touch
are saying. Their tone of voice also fails to reflect may make the same child scream with alarm.
their feelings, and is often described as high-pitched, Mental retardation Many children with ASD
sing-song, or flat and robotic. On the other hand, have some degree of thinking impairment in cer-
some children with ASD have fairly good language tain areas. A child with ASD may do well on visual
skills and speak like little adults, failing to pick up skills tests, but score poorly on language subtests.
on the way their peers speak or adjusting their Seizures One in four children with ASD devel-
manner of speech to fit their audience. ops seizures, often starting either in early child-
Without meaningful gestures or the language hood or adolescence. Seizures, which are caused by
to ask for things, people with ASD may scream abnormal electrical activity in the brain, can pro-
or grab what they want, and may have a limited duce a temporary loss of consciousness, a body con-
understanding of what others need. As they grow vulsion, unusual movements, or staring spells.
up, they can become increasingly aware of their An electroencephalogram (EEG, a recording of
difficulties in understanding others and in being the electric currents in the brain) can help confirm
understood, and as a result, may become anxious the seizure’s presence. In most cases, seizures can
or depressed. be controlled by anticonvulsants.
Repetitive behaviors Although children with Diagnosis While half of all children with one
ASD usually appear physically normal and have of the autism spectrum disorders are not diagnosed
good muscle control, they may exhibit odd repeti- until age four to six, it is possible to diagnose the
tive motions ranging from subtle to extreme. Some disorders in a child as early as 18 months old. Since
autism spectrum disorders 23

the earlier the condition is identified the earlier Customarily, an expert diagnostic team has the
treatment can begin and the better the prognosis responsibility of thoroughly evaluating the child,
for the child, early diagnosis is critically important. assessing the child’s unique strengths and weak-
A good diagnosis can identify whether a child does nesses, and determining a formal diagnosis. The
not have an autism spectrum disorder; if one of the team will then meet with the parents to explain the
five spectrum disorders does exist, the evaluation results of the evaluation.
can determine the seriousness of the problem, and The diagnosis of an autistic spectrum disor-
place the child “on the autism spectrum.” der typically requires a two-stage process. The
Because there are no medical tests for the autism first stage is a developmental screening during an
spectrum disorders, a diagnosis must be based on annual “well child” check-up, followed by a com-
observing the person’s communication, behavior, prehensive evaluation by a multidisciplinary team.
and developmental levels. Even in very early child- During the well-child visit, the pediatrician should
hood, parents can begin to observe their child to observe the child and note appropriate develop-
make sure certain developmental milestones are mental milestones, noting how the child behaves,
reached. For example, a two-year-old should be interacts, and communicates with a parent in the
able to point to an object when named, use two- to examining room.
four-word phrases, and follow simple instructions, Several screening instruments have been devel-
according to the U.S. Centers for Disease Control oped to quickly gather information about a child’s
and Prevention. A three-year-old should be able social and communicative development within
to imitate adults and playmates, play make-believe medical settings. Among them are the CHECKLIST
with dolls, and use pronouns or plural words. Par- FOR AUTISM IN TODDLERS (CHAT), the MODIFIED
ents might want to check with a pediatrician if their CHECKLIST FOR AUTISM IN TODDLERS (M-CHAT),
children have not mastered these skills. and the Screening Tool for Autism in Two-Year-
Since the five disorders included in the autism Olds (STAT). Some screening instruments rely
spectrum disorders occur on a continuum of symp- solely on parent responses to a questionnaire, and
toms, a careful diagnosis is needed. some rely on a combination of parent report and
observation. Important items on these tests that
• Children who may have some symptoms of the appear to differentiate children with autism from
autistic disorders, but do not have enough to be other groups before the age of two include point-
diagnosed with the classical form may be diag- ing and pretend play.
nosed with pervasive developmental disorder– It is important to remember that screening
not otherwise specified (PDD-NOS). instruments simply assess the need for referral for a
• Individuals who exhibit autistic behavior but possible diagnosis of an autism spectrum disorder.
who have well-developed language skills may They cannot be used alone to diagnose the condi-
be diagnosed with Asperger’s syndrome—a mild tion. In addition, these screening methods may not
form of autism. identify children with mild autism or high-func-
tioning autism or ASPERGER’S SYNDROME.
• Children who have the classic symptoms of
For children with milder suspected autism, the
inability to communicate, form relationships
Autism Spectrum Screening Questionnaire (ASSQ),
with others, and respond appropriately to the
the Australian Scale for Asperger’s Syndrome,
environment might be diagnosed with autistic
and the most recent CHILDHOOD ASPERGER SYN-
disorder (autism).
DROME TEST (CAST), can reliably identify school-
• Children who appear normal in their first sev- age children with Asperger’s syndrome or higher
eral years but then lose skills and begin showing functioning autism. The SOCIAL COMMUNICATION
autistic behavior may be diagnosed with child- QUESTIONNAIRE (SCQ) can be used for children four
hood disintegrative disorder (CDD). years of age and older. These tools concentrate on
• A chromosomal analysis can rule out the genetic social and behavioral impairments in children with-
disease Rett disorder. out significant language delay.
24 autism spectrum disorders

If after the screening process or during a routine • restricted patterns of interests that are abnormal
well-child checkup the pediatrician suspects autism in intensity or focus
or a condition on the autism spectrum, he or she • apparently inflexible adherence to specific rou-
will refer the parents for further formal diagnostic tines or rituals
testing to either a developmental pediatrician or a
• preoccupation with parts of objects
pediatric neurologist, a psychiatrist or psychologist,
or to a special team including a NEUROLOGIST, PSY- Ruling out other conditions Any child with
CHOLOGIST, speech language therapist.
a developmental delay should have a number of
Because autism spectrum disorders are so com- other tests to rule out certain disorders, because
plex and may involve other neurological prob- many of the behaviors associated with autism spec-
lems, a comprehensive evaluation should include trum disorders are similar to other conditions. A
neurologic and genetic assessment, in addition comprehensive hearing evaluation should be done
to in-depth cognitive and language testing. Also, to rule out hearing loss as the cause of abnormal
tests developed specifically for diagnosing autism language development; although some hearing loss
are often used, including the AUTISM DIAGNOSIS can occur along with ASD, some children with ASD
INTERVIEW–REVISED (ADI-R) and the AUTISM DIAG- may be incorrectly thought to have hearing prob-
NOSTIC OBSERVATION SCALE (ADOS). The ADI-R is lems. Lead screening is essential for children who
a structured interview that covers more than 100 often put things in their mouths. Blood tests can
items and is conducted with a caregiver and evalu- rule out metabolic disorders that affect amino acids
ates four aspects of the child’s behavior: the child’s and lipids in the blood, and a chromosomal analy-
communication skills, social interaction, repetitive sis can rule out genetic disorders such as FRAGILE X
behaviors, and age-of-onset symptoms. The ADOS SYNDROME (another genetic disorder causing mental
is a semi-structured behavioral observation that impairment). An electroencephalogram (EEG) can
evaluates communicative and social behaviors that rule out a seizure disorder, and magnetic resonance
are often delayed, abnormal, or absent in children imaging (MRI) can rule out brain disorders.
with ASD. Complicating disorders Because some people
Still another test for children over age two is the with an autism spectrum disorder also may have a
CHILDHOOD AUTISM RATING SCALE (CARS), which behavior disorder, problems with hearing, mental
helps evaluate the child’s body movements, adapta- retardation, or eccentric behavior, part of the diag-
tion to change, listening response, verbal communi- nosis will include not just in identifying the autism
cation, and relationships. In this test, the examiner condition, but also other complicating disorders.
observes the child and obtains information from
the parents. The child’s behavior is rated on a scale Treatment Options and Outlook
based on deviation from the typical behavior of While ASD cannot be cured, there are many ways
children of the same age. to help these children. Each state guarantees special
Specific diagnostic categories have changed over education and related services; the INDIVIDUALS WITH
the years as research progresses and as new editions DISABILITIES EDUCATION ACT (IDEA) is a federal pro-
of the Diagnostic and Statistical Manual (DSM) have gram that assures a free public education for chil-
been issued. Some frequently used criteria include dren with diagnosed learning deficits. The school
district pays for all necessary services, including ser-
• absence or impairment of imaginative and social vices by a speech therapist, occupational therapist,
play school psychologist, social worker, school nurse, or
aide. By law, the public schools must prepare and
• impaired ability to make friends with peers
carry out a set of instruction goals, or specific skills
• impaired ability to initiate or sustain a conversa- to be addressed, for every child in a SPECIAL EDU-
tion with others CATION program. The list of goals is known as the
• stereotyped, repetitive, or unusual use of language child’s INDIVIDUALIZED EDUCATION PROGRAM (IEP).
autism spectrum disorders 25

This IEP is an agreement between the school and communication and social interaction skills. In
the family on the child’s goals. children younger than three, instruction usually
If a child is under three years of age and has spe- occurs at home or a child care center, including
cial needs, he or she should be eligible for an early interventions that target specific problems in learn-
intervention program available in every state. The ing, language, imitation, attention, motivation, com-
services provided are written into an INDIVIDUALIZED pliance, and initiative of interaction. Included are
FAMILY SERVICE PLAN (IFSP) that is reviewed at least behavioral methods, communication, occupational
once every six months. The plan will describe ser- and physical therapy along with social play inter-
vices that will be provided to the child but will also ventions.
describe services for parents to help them in daily Children older than three usually receive a school-
activities with their child and for siblings to help based, individualized, special education, either in a
them adjust to having a brother or sister with ASD. segregated class with other ASD children or in an
There is no single best treatment for every child integrated class with children without disabilities for
with ASD, but almost all experts agree that early at least part of the day. All should provide a struc-
intervention is critical. Most experts also agree that ture that will help the children learn social skills and
most individuals with ASD respond well to highly functional communication. Teachers often involve
structured, specialized programs. the parents, giving useful advice in how to help their
Among the many methods available for treat- child use the skills or behaviors learned at school
ment and education of people with autism, APPLIED when they are at home.
BEHAVIOR ANALYSIS (ABA) has become widely In elementary school, the child should receive
accepted as an effective treatment. After 30 years help in any skill area that is delayed and be encour-
of research, applied behavioral methods appear to aged to grow in his or her areas of strength. Ideally,
help reduce inappropriate behavior and increase the curriculum should be adapted to the individual
communication, learning, and appropriate social child’s needs. Many schools today have an inclu-
behavior in children with ASD. The basic research sion program in which the child is in a regular class-
done by Ivar Lovaas and his colleagues at the Uni- room for most of the day, with special instruction
versity of California, Los Angeles, show that an for a part of the day. This instruction should include
intensive, one-on-one child-teacher interaction for such skills as learning how to act in social situations
40 hours a week provides a foundation for other and in making friends. Although higher-function-
educators and researchers to help those with ASD ing children may be able to handle academic work,
attain their potential. The goal of this type of behav- they too need help to learn social skills and orga-
ioral management is to reinforce desirable behav- nize tasks and avoid distractions.
iors and reduce undesirable ones. During middle and high school years, instruc-
An effective treatment program will build on the tion will begin to include practical matters such
child’s interests, offer a predictable schedule, teach as community living, and recreational activities,
tasks as a series of simple steps, actively engage the and include work experience, using public trans-
child’s attention in highly structured activities, and portation, and learning skills that will eventually
regularly reinforce behavior. be important in living independently. While some
Parental involvement is also an important part ASD behaviors improve during the teenage years,
of treatment success. In ABA, parents work with others may get worse. Increased autistic or aggres-
teachers and therapists to identify the behaviors sive behavior may be one way some teens express
to be changed and the skills to be taught. Because their newfound tension and confusion. At an age
experts now realize that parents are the child’s ear- when most teenagers are concerned with popular-
liest teachers, more programs are beginning to train ity, grades, and social skills, teens with autism may
parents to continue the therapy at home. realize they are different from their peers. Unlike
Instruction should start as soon as the ASD has their classmates, they may not have friends, they
been diagnosed. Effective programs teach early may not date, or they may have more problems
26 autism spectrum disorders

planning for a career. For some, the sadness that hyperactivity in higher functioning children. Sev-
comes with such realization motivates them to learn eral other medications have been used to treat these
new behaviors and acquire better social skills. symptoms, including antidepressants, naltrexone,
Medications Medications are often used to lithium, and some of the benzodiazepines such as
treat behavioral problems common in people with diazepam (Valium) and lorazepam (Ativan). The
ASD, such as aggression, self-injurious behavior, safety and efficacy of these medications in children
and severe tantrums. Many of these medications with autism has not been proven.
are prescribed “off-label,” which means they have Controversial treatments There are a number of
not been approved by the government for use in controversial treatments for ASD. To be accepted as
children with autism; the doctor can legally pre- a proven treatment, the treatment should undergo
scribe this medicine if he or she feels it is appropri- randomized, double-blind clinical trials that com-
ate. Because a child with ASD may not respond to pare treatment and no treatment.
medications in the same way as normal children, Some of the controversial interventions that
it is important that parents work with a physician have been reported as possibly helpful to some
who has experience with autism. children but whose success or safety has not been
Antipsychotic medications, many of which work proven include dietary interventions, vitamin B6,
by reducing the activity of the neurotransmitter and SECRETIN.
dopamine, have been used to treat severe behavioral Dietary interventions are based on the idea that
problems. Among the older, typical antipsychotics, food allergies may cause symptoms of ASD and a
HALOPERIDOL (Haldol) was more effective than a pla- lack of a specific vitamin or mineral may worsen
cebo in treating serious behavioral problems. How- some symptoms. If parents decide to try a special
ever, haloperidol also can have side effects, such as diet for a given period of time, they should be sure
sedation, muscle stiffness, and abnormal movements. that the child’s nutritional status is measured care-
Placebo-controlled studies of the newer atypical fully. A diet that some parents have reported to be
antipsychotics are being conducted on children with helpful to their autistic child is a gluten-free, casein-
autism. The first such study was on RISPERIDONE (Ris- free diet. Gluten is a casein-like substance that is
perdal); results showed that risperidone was effec- found in the seeds of various cereal plants—wheat,
tive and well tolerated for treating severe behavioral oat, rye, and barley. Casein is the principal protein
problems in children with autism. The most common in milk. Since gluten and milk are found in many
side effects were increased appetite, weight gain, and of the foods we eat, following a gluten-free, casein-
sedation. Further long-term studies are needed to free diet is difficult.
determine any long-term side effects. Other atypi- A supplement that some parents believe is ben-
cal antipsychotics that have been studied recently eficial for an autistic child is vitamin B6, taken with
with encouraging results are olanzapine (Zyprexa) magnesium (which makes the vitamin more effec-
and ziprasidone (Geodon). Ziprasidone has not been tive). The result of research studies is inconclusive;
associated with significant weight gain. some children appear to respond positively, some
Seizures occur in one in four people with ASD, negatively, some not at all or very little.
most often in those who also have significant men- In the search for treatment for autism, there has
tal impairment. They are treated with one or more been discussion in the last few years about the use
of the anticonvulsants. These include such medi- of secretin, a substance approved by the Food and
cations as carbamazepine (Tegretol), lamotrigine Drug Administration (FDA) for a single dose nor-
(Lamictal), topiramate (Topamax), and valproic mally given to aid in diagnosis of a gastrointestinal
acid (Depakote). Although medication usually problem. Anecdotal reports suggested improvement
reduces the number of seizures, it cannot always in autism symptoms, including improved sleep pat-
eliminate them. terns, eye contact, language skills, and alertness.
Stimulant medications such as methylphenidate However, multiple clinical trials conducted in the
(Ritalin) also have been prescribed for children last few years have found no significant improve-
with autism in order to decrease impulsivity and ments in symptoms between patients who received
autism spectrum disorders 27

secretin and those who received a placebo, and this meals, go to work, and conduct other daily activi-
treatment is not recommended by the American ties on their own.
Academy of Pediatrics. Although the trend in recent decades has been to
avoid placing individuals with ASD into long-term-
Adults with ASD care institutions, this alternative is still available for
Some adults with ASD, especially those with high- those who need intensive, constant supervision.
functioning autism or with Asperger’s syndrome, are
able to work successfully, although communication ASD Research
and social problems often cause problems. These There are many studies now being conducted into
individuals will continue to need encouragement the possible cause and treatment of ASD.
and support in living an independent life. Many Thimerosal In the past few years some parents
others with ASD can work in sheltered workshops and some experts have suggested a link between
under the supervision of managers trained in work- autism and a mercury-based preservative called
ing with persons with disabilities. A nurturing envi- thimerosal used as a preservative in the measles-
ronment at home, at school, and later in job training mumps-rubella (MMR) vaccine. Although mer-
and at work, helps persons with ASD continue to cury is no longer used in childhood vaccines in
learn and to develop throughout their lives. the United States, some parents still have con-
In most states, the public schools’ responsibil- cerns about vaccinations. Many large-scale studies
ity for providing services ends when a person with have failed to show a link between thimerosal and
ASD reaches the age of 22. The family is then faced autism. A panel from the Institute of Medicine is
with the challenge of finding living arrangements examining these studies, including a large Danish
and employment to match the particular needs of study that concluded that there was no causal rela-
their adult child, as well as the programs and facili- tionship between childhood vaccination using thi-
ties that can provide support services to achieve merosal-containing vaccines and the development
these goals. of an autism spectrum disorder, and a U.S. study
Living arrangements for the adult with ASD looking at exposure to mercury, lead, and other
Some adults with ASD are able to live entirely on heavy metals.
their own, while others can live semi-independently Biologic basis of ASD As new brain imaging
in their own homes or apartments if they have tools are developed—including computed tomog-
help with solving major problems, such as personal raphy (CT), positron emission tomography (PET),
finances or dealing with government agencies. single photon emission computed tomography
Government funds are available for families (SPECT), and magnetic resonance imaging (MRI)—
who choose to have their adult child with ASD live study of the structure and the functioning of the
at home, including Supplemental Security Income brain is possible.
(SSI), Social Security Disability Insurance (SSDI), Postmortem and MRI studies have shown that
Medicaid waivers, and others. many major brain structures are implicated in ASD,
Some families open their homes to provide including the cerebellum, cerebral cortex, limbic
long-term care to unrelated adults with disabilities. system, corpus callosum, basal ganglia, and brain
A home that teaches self-care and housekeeping stem. Other research is focusing on the role of neu-
skills and arranges leisure activities is called a “skill- rotransmitters such as serotonin, dopamine, and
development” home. epinephrine.
Persons with ASD often live in group homes or Genetics Evidence points to genetic factors play-
apartments staffed by professionals who help the ing a prominent role in ASD, although not all experts
individuals with basic needs, such as meal prepa- agree as to the specific hereditary aspects. Twin and
ration, housekeeping, and personal care. Higher family studies have suggested an underlying genetic
functioning persons may be able to live in a home vulnerability to ASD. The Autism Genetic Resource
or apartment where staff visit only a few times a Exchange, a project initiated by the Cure Autism
week. These persons generally prepare their own Now Foundation and the government, is recruiting
28 Autism Tissue Program

genetic samples from several hundred families to pathways and even looking at the individual neu-
further study a possible hereditary basis to ASD. rons of the brain to help understand both normal and
abnormal neurodevelopment. What scientists learn
about brain development can be applied to day-to-
Autism Tissue Program A national outreach day educational programs to make the most of the
program, directed toward people with autism and brain’s capacity to change. What scientists learn about
their healthy family members, that coordinates the molecules and neurotransmitters in the brain can
donation of human brain tissue for research into lead to new medications, and a better understanding
AUTISM SPECTRUM DISORDERS. of autism genetics increases the ability to diagnose
Because of the strong suggestion of a hereditary autism and assess the risks of inheritance.
link to autism and the development of advanced The Autism Tissue Program is a joint effort of
techniques to measure gene expression in single the Autism Society of America Foundation, the
neurons, all members of families in which one National Alliance for Autism Research, and the
or more members has autism are encouraged to M.I.N.D. (Medical Investigation of Neurodevel-
donate brain tissue. Researchers also need brain opmental Disorders) Institute at the University of
tissue from “normal controls” (people who are California, Davis.
neither autistic nor related to people with autism)
to compare to tissue from affected individuals and
their families. autistic celebrity family members There are
After a death, brain tissue recovery is coordi- many well-known celebrities who have chosen to
nated nationally by the Autism Tissue Program write or speak about their autistic family members,
and by the Harvard Brain Tissue Resource Cen- including:
ter, which pays for the costs of tissue recovery. In
the event of a death, the next-of-kin contacts the • Richard Burton (actor): daughter with his first
program, and the brain bank will arrange for the wife
donation to be carried out by a pathologist in the
• William Christopher (Father Mulcahy on the TV
patient’s area, in the nearest hospital equipped for
show M*A*S*H): son Ned
the procedure. If death has occurred in a hospital,
tissue retrieval is usually completed within a few • Will Clark (baseball player): son
hours and the body is then released to the funeral • Myron Cope (Pittsburgh sportscaster): son
home for care. If death occurs elsewhere, the body • Tom Henke (Toronto baseball pitcher): son
must be transported by the funeral home staff to a
local hospital for tissue recovery. The associates at • Audrey Flack (sculptor, photographer): adult
the brain bank work with funeral directors, medi- child with autism
cal examiners, and pathologists to ensure that the • Doug Flutie (football player): son Doug, Jr.
family’s requests are fulfilled. The body is treated • Stephen J. Gould (scientist/writer): son Jesse
with respect and compassion by the physicians and • Merton Hanks (football player): daughter Milan
scientists involved in this process as tissue is recov-
ered and prepared according to a strict protocol • Scott Mellanby (hockey player): son
and transferred to the brain bank. Brain and tissue • Joe Mantegna (actor): daughter
recovery does not interfere with having an open • Dan Marino (football player): son
casket or with other traditional religious funeral
• Wynton and Bradford Marsalis (jazz/classical
arrangements. Because many donor families are
musicians): brother
very much interested in autism research, the next
of kin receive updates on research progress. • Mark McEwen (CBS-TV Morning News weath-
When they receive brain tissue from a patient erman): brother Sean
with autism, researchers are able to study autism at a • Barbara Roberts (former Governor of Oregon):
cellular and molecular level, checking out particular adult child with autism
autistic disorder 29

• Tracy Rowlett (Dallas anchor): son Most children with this condition look perfectly
• Jonathan Shestak (movie producer): son Dov normal but may spend their time engaged in puz-
zling and disturbing behaviors that are markedly
• Beverly Sills (opera singer): son Bucky
different from those of typical children. Children
• Phoebe Snow (singer): daughter with autistic disorder usually do not engage in
• Sylvester Stallone (movie actor): son Seargeoh social play or games with their peers. Unusual
• BJ Surhoff (Baltimore baseball player): son behaviors, such as rocking, HAND FLAPPING, or even
Mason self-injurious behavior may be evident in some
cases. The child may stare into space for hours,
• David Tomlinson (actor who starred in Mary
throw uncontrollable tantrums, show no interest
Poppins, Bedknobs and Broomsticks, The Love Bug,
in people (including his or her parents) and pur-
etc.): son
sue strange, repetitive activities with no apparent
purpose. He or she may seem to live in a world
of his or her own. Some autistic individuals are
autistic disorder A severe developmental disor-
remarkably gifted in certain areas, such as music
der known popularly as autism that affects a per-
or mathematics.
son’s ability to communicate, form relationships
The result of a neurological disorder that affects
with others, and respond appropriately to the envi-
the functioning of the brain, autistic disorder has
ronment. Autistic disorder is a spectrum disorder,
been estimated to occur in as many as one in 500
which means that its symptoms and characteristics people. Its prevalence rate makes it one of the most
can appear in a wide variety of combinations, from common developmental disabilities, four times
mild to severe. It is one of five related disorders more common in boys than girls and not related
known collectively as the AUTISM SPECTRUM DISOR- to race, ethnic origin, family income, lifestyle, or
DERS (ASDs). Left untreated, many children with education.
autistic disorder will not develop effective social There appears to have been a rapid increase in
skills and may not learn to communicate or behave the number of children diagnosed with autistic dis-
appropriately. Very few individuals recover com- order, especially in California, which has an accu-
pletely without any intervention. rate and systematic centralized reporting system of
Autistic disorder is a “developmental disorder,” all diagnoses of this disorder. The California data
which means that its symptoms usually appear show that incidence of autistic disorder appears to
during the first three years of childhood and con- be rising rapidly, from one per 2,500 in 1970 to one
tinue throughout life. Although autistic disorder is per 285 in 1999. Similar results have been reported
defined by a certain set of behaviors, children and for other states by the U.S. Department of Educa-
adults can exhibit any combination of behavior tion. Whereas autism once accounted for 3 percent
in any degree of severity. Two children with the of all developmental disabilities in California, it
same diagnosis can act very differently from each now accounts for 45 percent of all new develop-
other and have varying skills. Every person with mental disabilities. Other countries report similar
autistic disorder is an individual, with a unique increases.
personality and combination of characteristics. Experts disagree as to whether—and why—there
Some individuals who are only mildly affected has been a dramatic increase in autistic disorder
may experience just slight delays in language but over the past two decades; some insist the increase
have more trouble with social interactions, such as is simply due to better diagnosis, while others argue
problems starting or maintaining a conversation. that the increase is an actual boost in numbers. Still
The communication style of a person with autistic others believe that because there may be more than
disorder is often described as one of talking “at” one cause, there could be more than one reason
others, using a monologue on a favorite subject for the increase. Today, experts are concerned
that continues despite attempts by others to inter- not only about autistic disorder but about all five
ject comments. disorders on the autism spectrum. These cases
30 autistic disorder

encompass a greater range of symptoms, includ- der, and neither family income, education, or life-
ing those with only mild symptoms. It is possible style affect the risk of developing the problem.
that many of today’s children with autistic disor- Heredity Genetics appears to play an important
der used to be identified as something else, such as role in the development of some cases of autistic
learning disabled or mentally retarded. Other chil- disorder. In many families, there seems to be a pat-
dren might have been labeled eccentric or unusual tern of autistic disorder or related disabilities, which
but not disabled. suggests a genetic basis to the disorder. In the gen-
For example, children with Asperger’s syndrome eral population, the disorder affects up to 0.2 per-
fall under the autism spectrum disorder label, even cent of children, but the risk of having a second
though Asperger’s syndrome symptoms tend to child with autistic disorder increases more than 50
be more subtle than full-blown autistic disorder. times—to 10 to 20 percent. An identical twin of a
Other children with even milder symptoms might child with autistic disorder is far more likely to have
be diagnosed as PERVASIVE DEVELOPMENTAL DISORDER– the same condition than a fraternal twin or another
NOT OTHERWISE SPECIFIED (PDD-NOS). This category sibling. In addition, many studies have identified
includes a large group of children with less strik- various thinking disabilities in siblings of children
ing impairments in their social and communicative with autistic disorder.
behavior and/or less pronounced repetitive behav- However, at this time no one gene has been
ior or narrow interests than have children with directly linked to autistic disorder, and studies try-
autistic disorder. There are many more of these ing to identify specific genes associated with the dis-
children than those who are diagnosed with the order have been inconclusive. Scientists think that
more classic autistic disorder. the genetic basis is complex and probably involves
Autistic disorder is one of five related disorders several combinations of at least 20 or more genes.
as defined by the American Psychiatric Association This is in contrast to other disorders, such as FRAG-
in its diagnostic manual (Diagnostic and Statistical ILE X SYNDROME or Rett disorder, in which single
Manual [DSM-IV-TR]), known collectively as autism genes have been identified.
spectrum disorders. Sometimes the term autism is Immune system disorder Some studies have
used to describe autistic disorder and sometimes it suggested that individuals with autistic disorder
is used to describe all five ASDs, including autistic may have weakened immune systems. In fact,
disorder, Asperger’s syndrome, and PDD-NOS. Two some experts believe autism may be due, in part, to
other, far more rare conditions also included in the an autoimmune system disorder. Some believe that
spectrum are RETT DISORDER and CHILDHOOD DISIN- in some children, the immune system is weakened
TEGRATIVE DISORDER. either due to faulty genes or environmental insult
(such as exposure to certain chemicals), which may
Causes predispose the child to autism. Exposure to an addi-
Autistic disorder affects the normal development of tional environmental toxin may then trigger autis-
the brain. Although a single specific cause of the tic disorder.
disorder is not known, current research links autis- Vaccinations Although genetics play an impor-
tic disorder to biological or neurological differences tant role in autistic disorder, environmental factors
in the brain. The disorder has been associated with also may be involved. The possible role of vaccina-
maternal German measles infection, phenylketon- tions, many of which were added to the vaccination
uria (an inherited disorder of metabolism), tuber- schedule in the 1980s and are typically adminis-
ous sclerosis (an inherited disease of the nervous tered to children between ages one and two, is a
system and skin), lack of oxygen at birth, encepha- matter of considerable controversy. Prior to 1990,
litis, and infantile spasms. about two-thirds of children with autistic disorder
It is neither a mental illness nor a behavior displayed symptoms at an early age, and only one-
problem, and it is not caused by bad parenting. No third initially appeared to be developing appropri-
known psychological factors in the development of ately, regressing some time after age one. Starting
the child have been shown to cause autistic disor- in the 1990s, the trend has reversed—fewer than
autistic disorder 31

one-third are evidence of early-onset symptoms careful family histories of all their patients to bring
and two-thirds develop symptoms in their second to light any factors that might influence their recom-
year. mendations about the timing of vaccinations. Some
The concept of a link between autism and vac- researchers and physicians have recommended an
cines is decidedly controversial. Some experts alternative vaccine schedule that recommends delay-
believe that the measles-mumps-rubella (MMR) ing some vaccinations and separating the measles,
combination vaccine is implicated in autistic dis- mumps, and rubella vaccinations.
order in some children, pointing to evidence of Environmental problems Some of the environ-
measles virus detected in the gut, spinal fluid, and mental factors that may play a role in the develop-
blood. They also note that the incidence of autistic ment of autistic disorder include
disorder began rising significantly when the MMR
was introduced in the United States in 1978 and in • Oral antibiotics: Excessive use may cause intestinal
the United Kingdom 10 years later. problems, such as yeast/bacterial overgrowth, and
Some experts also suspect thimerosal, a mer- prevent mercury excretion, although research in
cury-based preservative in childhood vaccines, may this area is controversial.
be linked to autistic disorder. The number of vac- • Prenatal exposure to mercury: Pregnant women who
cines given to children has risen over the last two eat seafood high in mercury (such as swordfish
decades, and many of those vaccines contained thi- or tuna) could be exposing their unborn chil-
merosal. These experts believe that the symptoms dren to toxic levels.
of mercury poisoning in children are very similar
• Essential minerals: Lack of zinc, magnesium, iodine,
to the symptoms of autistic disorder. In response
lithium, and potassium may lead to problems.
to these concerns, manufacturers of children’s vac-
cines have removed thimerosal from almost all vac- • Pesticides and other environmental toxins.
cines administered to children.
On the other hand, the National Institute of Symptoms and Diagnostic Path
Child Health and Human Development (NICHD) Symptoms of autistic disorder vary greatly depending
argues there has been no conclusive scientific evi- on the developmental level and chronological age of
dence that any part of a vaccine or any combination the individual. Some parents report that their child
of vaccines causes autistic disorder. The NICHD also seemed “different” at birth; these children are consid-
points out that no conclusive data exist that show ered to have early-onset autistic disorder. Other parents
that any type of preservative (such as thimerosal) report that their child seemed to develop normally
used during the manufacture of vaccines plays any and then suddenly experienced a major regression,
role in causing autistic disorder. usually between 12 and 24 months of age. These chil-
In 2001, the Institute of Medicine (IOM) and the dren are diagnosed with late-onset or regressive autistic
American Academy of Pediatrics (AAP) released disorder. Although some researchers argue that this
findings from their separate reviews of the available late-onset regression could not be real, or that the
evidence on a possible link between vaccines and autistic disorder was simply unnoticed by the child’s
autism. Both groups independently found that exist- parents, many parents insist that their children had
ing evidence does not support such a connection. completely normal speech, behavior, and social skills
Still, research continues into the link between until some time between age one and two.
autistic disorder and vaccines, including research into In any case, whenever it appears, autistic dis-
the effects of thimerosal on the immune system. order significantly impairs a child’s ability to com-
The National Immunization Program at the Cen- municate and socialize with others. While severity
ters for Disease Control and Prevention (CDC), along and symptoms vary according to age, the disorder
with the AAP and the American Academy of Family is significant and sustained. Children with autistic
Physicians, suggests that physicians follow the rec- disorder demonstrate little interest in friends or
ommended childhood immunization schedule that is social interactions, often failing to develop verbal
published every year. Physicians are advised to take and nonverbal communication skills. Typically,
32 autistic disorder

these children function at a low intellectual level; • attachment to unusual objects


most experience mild to severe mental retardation. • unusual visual interests
However, this is by no means true for all individ-
• insensitivity or hypersensitivity to pain, tempera-
uals with autistic disorder. The condition may be
ture, taste, touch, smell, sounds, light, and so on
accompanied by average or strong abilities in an
isolated area.
Social
During the course of childhood and adolescence,
children with this condition nevertheless usu- • abnormal eye contact
ally make some developmental gains. Those who • not noticing when name is called
show improvement in language and intellectual
• preferring to be alone
ability have the best overall prognosis. Although
some individuals with autistic disorder are able to • ignoring others
live with some measure of partial independence • limited imitation (not waving hello or good-bye)
in adulthood, very few are able to live entirely on • not initiating social games, such as patty-cake or
their own. peekaboo
The disorder makes it hard for children to com-
municate with others and relate to the outside world. • little interest in being held
There may be repeated body movements (hand • lack of attention
flapping, rocking), lack of or unusual responses to • limited pointing or gestures
people, attachments to objects, and/or resistance
to changes in routines. In some cases, there may Communication
be aggressive or self-injurious behavior. Autism
may affect a child’s range of responses, and their • echolalia (repeating words or phrases)
reactions may appear out of context (for example,
• no babbling by 12 months
laughing inappropriately). Often these children
have difficulty maintaining EYE CONTACT, and some • no single words by 16 months
use peripheral vision rather than looking directly at • no two-word spontaneous phrases by 24
others. Often touching or being close to others may months
be upsetting to a person with autism. Because they • peculiar use of language
may experience sensory information in an unusual
way, people with autism sometimes may feel anxi- • lack of pretend play
ety, fear, and confusion. • failure to attract attention
There are several specific symptoms from a list • no use of early forms of communication
in the DSM-IV-TR related to these difficulties that
children must show in order to meet the criteria for While half of all children with autism are not
autistic disorder (see below). diagnosed until ages four to six, it is possible to
Initial warning signs There are a number of diagnose a child as early as age 18 months. Since
warning signs that parents or teachers may notice the earlier the condition is identified the earlier
that may indicate autistic disorder, in three basic treatment can begin and the better the prognosis
areas: behavior, communication, and social for the child, early diagnosis is critically important.
skills. A good diagnosis can identify whether a child does
not have autism; if autism does exist, the evalua-
Behavior tion can determine the seriousness of the problem
and place the child “on the autism spectrum.”
• obsession with objects, interests, or routines
Because there are no medical tests for autism, a
• inappropriate or unusual play with toys diagnosis must be based on observing the person’s
• repetitive body movements or unusual body communication, behavior, and developmental lev-
postures els. Even in very early childhood, parents can begin
autistic disorder 33

to observe their child to make sure certain devel- tiate children with autism from other groups before
opmental milestones are reached. For example, a the age of two include pointing and pretend play.
two-year-old should be able to point to an object It is important to remember that screening
when named, use two- to four-word phrases, and instruments simply assess the need for referral for
follow simple instructions, according to the CDC. A a possible diagnosis of autism; they cannot be used
three-year-old should be able to imitate adults and alone to diagnose the condition. In addition, these
playmates, play make-believe with dolls, and use screening methods may not identify children with
pronouns or plural words. Parents might want to mild autism, high-functioning autism, or Asperger’s
check with a pediatrician if their children have not syndrome.
mastered these skills. For children with milder suspected autism, the
The diagnosis of autism typically requires a Autism Spectrum Screening Questionnaire (ASSQ),
two-stage process. The first stage is a develop- the Australian Scale for Asperger’s Syndrome,
mental screening during an annual “well-child” and the most recent CHILDHOOD ASPERGER SYN-
checkup, followed by a comprehensive evaluation DROME TEST (CAST), can reliably identify school-
by a multidisciplinary team. A child’s pediatrician age children with Asperger’s syndrome or higher
should always conduct a developmental screening functioning autism. The SOCIAL COMMUNICATION
at every well-baby and well-child visit throughout QUESTIONNAIRE (SCQ) can be used for children four
the preschool years. During the well-child visit, the years of age and older. These tools concentrate on
pediatrician should observe the child and look for social and behavioral impairments in children with-
appropriate developmental milestones, noting how out significant language delay.
the child behaves, interacts, and communicates If after the screening process or during a routine
with a parent in the examining room. The doctor well-child checkup the pediatrician suspects autism
should ask questions related to normal develop- or a condition on the autism spectrum, he or she will
ment, such as about the child’s verbal and gestural refer the parents to either a developmental pedia-
language and whether the child holds up objects for trician or a pediatric neurologist, a psychiatrist or
a parent to see. The doctor should evaluate a child psychologist, or to a special team including a NEUROL-
for autistic disorder if he or she OGIST, PSYCHOLOGIST, and speech language therapist
for further formal diagnostic testing. The specialists
• does not babble, coo, point, wave, or grasp by 12 will rule out other disorders and use assessments
months of age specific to autistic disorder.
Diagnosis is made by taking a developmental
• does not say single words by 16 months of age
history and observing behavior. Because autism is
• does not say two-word phrases independently a complex disorder that may involve other neu-
(rather than just repeating what someone else rological problems, a comprehensive evaluation
says) by 24 months of age should include neurologic and genetic assess-
• loses any language or social skill at any age ment, along with in-depth cognitive and language
testing.
Several SCREENING INSTRUMENTS FOR AUTISM have In addition, tests developed specifically for diag-
been developed to quickly gather information about nosing autism are often used, including the AUTISM
a child’s social and communicative development DIAGNOSIS INTERVIEW–REVISED (ADI-R) AND THE
within medical settings. Among them are the CHECK- AUTISM DIAGNOSTIC OBSERVATION SCALE (ADOS).
LIST FOR AUTISM IN TODDLERS (CHAT), the MODIFIED The ADI-R is a structured interview that cov-
CHECKLIST FOR AUTISM IN TODDLERS (M-CHAT), and ers more than 100 items and is conducted with a
the Screening Tool for Autism in Two-Year-Olds caregiver. It evaluates four aspects of the child’s
(STAT). Some screening instruments rely solely on behavior: the child’s communication skills, social
parent responses to a questionnaire, and some rely interaction, repetitive behaviors, and age-of-onset
on a combination of parent report and observation. symptoms. The ADOS is a semi-structured behav-
Important items on these tests that appear to differen- ioral observation that evaluates communicative
34 autistic disorder

and social behaviors that are often delayed, abnor- • inability to make friends
mal, or absent in children with ASD. • playing alone
Still another test for children over age two is the
• lack of separation anxiety
CHILDHOOD AUTISM RATING SCALE (CARS), which
helps evaluate the child’s body movements, adapta- • unprovoked aggression toward others
tion to change, listening response, verbal communi- Communication problems
cation, and relationships. In this test, the examiner
observes the child and obtains information from • impaired speech or language onset in childhood
the parents. The child’s behavior is rated on a scale • language impairment
based on deviation from the typical behavior of • meaningless repetition of words or phrases
children of the same age.
It may not be possible to definitively diagnose • appears deaf sometimes
autistic disorder or confirm suspected cases in chil- • inability to maintain conversation
dren until the age of three (or sometimes not until • unusual language
four), when the typical behavior becomes more
• refusal to speak
obvious. In some cases, however, the diagnosis may
be suspected in the first year of life. • mixing up pronouns
Diagnostic categories have changed over the
years as research progresses and as new editions Behavior problems
of the American Psychiatric Association’s Diag- • self-destructive behavior
nostic and Statistical Manual have been issued. In
• bizarre or repetitive behavior patterns, such as
general, to be diagnosed with autistic disorder,
uncontrollable head banging, screaming fits,
the person must have symptoms that belong to
arm flapping
the three main areas of core features—impair-
ment in language, impairment in social interac- • lines things up
tions, and the presence of repetitive stereotype • very distressed by minor changes in the envi-
behaviors or interests. For a diagnosis of autism, ronment
a physician will identify specific symptoms from a • overreaction or under-reaction to sensory stimulus
list in the DSM-IV-TR related to these difficulties. A
• delayed mental and social skills
child must show at least some of these symptoms
in order to meet the criteria for autistic disorder, • inflexibility
some of which include • adherence to routines
• unusual or severely restricted activities
Problems with social skills, including
• rocking, hand flapping, hair twirling
• unresponsiveness to people
• reduced or increased sensitivity to pain or
• lack of attachment to parents or caretakers temperature
• rigid or flaccid muscle tone while being held; • tantrums
resisting being held or cuddled
• regression
• little or no interest in human contact
• self-mutiliation
• lack of attachment to parents or caretakers
• lack of response to name Autistic disorder vs. autism spectrum disor-
• not smiling (not looking at others) ders Because autism is considered to be one
of five related conditions collectively known as
• avoiding eye contact
“autism spectrum disorders,” it is important to cor-
• lack of imaginative play rectly place the child’s symptoms on the autism
• lack of stranger anxiety continuum. Some children who may have some
autistic disorder 35

symptoms of autism but who do not have enough Treatment Options and Outlook
to be diagnosed with the classical form of the disor- While there is no cure for the brain abnormali-
der, may be diagnosed with pervasive developmen- ties that cause autistic disorder, children can learn
tal disorder–not otherwise specified (PDD-NOS). skills, coping mechanisms, and strategies to ease
Some who exhibit autistic behavior but who have various symptoms. Intensive, appropriate early
well-developed language skills may be diagnosed intervention greatly improves the outcome for
with Asperger’s syndrome. Children who appear most young children. Most programs will build on
normal in their first several years but then lose the interests of the child, teach functional skills in
skills and begin showing autistic behavior may a highly structured manner using behavioral tech-
be diagnosed with CHILDHOOD DISINTEGRATIVE DIS- niques, follow a consistent schedule of activities,
ORDER. A chromosomal analysis can rule out RETT and include visual cues.
DISORDER, a rare sex-linked genetic disorder char- Some symptoms may lessen as the child ages and
acterized by inadequate brain growth, seizures, others may disappear altogether; with appropriate
and other neurological problems and part of the treatment, many problem behaviors can be changed
spectrum of autism disorders. Autism in itself is so that the person may appear to no longer have
diagnosed as autistic disorder. autistic disorder. However, most patients continue
Ruling out other conditions Because some to show some residual symptoms to some degree
people with autism also may have a behavior dis- throughout their entire lives.
order, problems with hearing, mental retardation,
Preschool programs While various preschool
or eccentric behavior, part of the diagnosis will
models may differ, all emphasize early, appropriate,
consist not only in identifying autism or AUTISM
and intensive educational interventions for young
SPECTRUM DISORDERS, but also other complicating
children. Each state guarantees special education
disorders. It is, therefore, important to distinguish
and related services. The INDIVIDUALS WITH DISABILI-
autistic disorder from other conditions, because
TIES EDUCATION ACT (IDEA), P.L. 108-77, and Indi-
early identification is required for an effective
viduals with Disabilities Education Improvement
treatment program.
Act 17 (2004) are federal programs that assure a
Any child with a developmental delay should
free appropriate public education for children with
have a number of other tests to rule out these disor-
autism. Each child is entitled to these services from
ders. A comprehensive hearing evaluation should
be done to rule out hearing loss as the cause of age three through high school, or until age 21,
abnormal language development. Although some whichever comes first.
hearing loss can occur along with autism, some In children younger than three, instruction usu-
children with autism may be incorrectly thought to ally occurs at home or a child care-center, includ-
have hearing problems. Lead screening is essential ing interventions that target specific problems in
for children who often put things in their mouths. learning, language, imitation, attention, motiva-
Blood tests can rule out metabolic disorders that tion, compliance, and initiative of interaction.
affect amino acids and lipids in the blood, and a Effective programs teach early communication
chromosomal analysis can rule out genetic disor- and social interaction skills. Included are behav-
ders such as FRAGILE X SYNDROME. An electroen- ioral methods, communication, occupational and
cephalogram (EEG) can rule out a seizure disorder, physical therapy, in addition to social play inter-
and magnetic resonance imaging (MRI) can rule ventions.
out brain disorders. While various preschool models may differ, all
Customarily, an expert diagnostic team has the emphasize early, appropriate, and intensive edu-
responsibility of thoroughly evaluating the child, cational interventions for young children. Other
assessing the child’s unique strengths and weak- common aspects of treatment may include
nesses and determining a formal diagnosis. The
team will then meet with the parents to explain the • use of techniques from the field of applied behav-
results of the evaluation. ior analysis
36 autistic disorder

• individualized treatment goals based on the adaptive behavior, and play. In addition, interven-
child’s unique strengths and weaknesses tion programs should have a clear mechanism to
• focus on functional communication, such as eliminate any problem behaviors. Techniques from
teaching the child to ask for things he or she the field of applied behavior analysis are recom-
wants (using spoken language, sign language, or mended by many experts. Initially, most young
picture communication) children with autistic disorder require a small ratio
of children to adults to ensure effective interven-
• initial use of one-on-one instruction until the
tion. Ideally, this should include some opportuni-
child is able to benefit from group instruction
ties for one-to-one instruction.
• ample opportunities for repetition and rehearsal The laws state that children must be taught
of new skills in the least restrictive environment, appropriate
• some degree of inclusion with typically develop- for the individual child. This statement does not
ing children mean that each child must be placed in a regular
• activities that build on the interests of the child classroom. Instead, the laws mean that the teach-
ing environment should be designed to meet a
• extensive use of visual cues to accompany child’s learning needs, while minimizing restric-
instruction tions on the child’s access to typical learning
• dealing with problem behaviors by trying to experiences and interactions. Educating children
understand why a child is acting this way with autistic disorder often includes a combi-
• structured activities nation of one-to-one, small group, and regular
• extensive staff training classroom instruction.
To qualify for special education services, the
• parent-training to ensure generalization of child must meet specific criteria as outlined by fed-
skills to environments outside of the treatment eral and state guidelines. Parents can contact a local
setting school principal or special-education coordinator
• strategies for transitioning between activities to learn how to have a child assessed to see if he
• follow up to ensure successful carryover of skills or she qualifies for services under these laws. Edu-
at conclusion of early intervention program cational programs for students with autism should
focus on improving communication, social, aca-
Treatment is most successful when geared demic, behavioral, and daily living skills. Behav-
toward the individual’s particular needs. An expe- ior and communication problems that interfere
rienced specialist or team should design the indi- with learning sometimes require the assistance of a
vidualized program, which may include treatments knowledgeable professional in the autism field who
from various fields. helps to implement a plan that can be carried out at
In addition to a preschool program, children home and school.
with autistic disorder should be trained in func- The school district pays for all necessary services,
tional living skills at the earliest possible age. Learn- including services by a speech therapist, occupa-
ing to cross a street, to buy something in a store, or tional therapist, school psychologist, social worker,
ask for help are critical skills and may be hard even school nurse, or aide. By law, the public schools
for average people. Training is aimed at boosting a must prepare and carry out a set of instruction
child’s independence and providing opportunity for goals, or specific skills, for every child in a SPECIAL
personal choice and freedom. EDUCATION program. The list of skills is known as the
Education Studies show that individuals with child’s INDIVIDUALIZED EDUCATION PROGRAM (IEP).
autistic disorder respond well to a highly structured, This IEP is an agreement between the school and
specialized education program tailored to the indi- the family on the child’s goals. The special-services
vidual’s needs. A well-designed early intervention team should evaluate and reevaluate each child on
program typically addresses functional communi- a regular basis to see how the child is doing and
cation, social interaction skills, preacademic skills, whether any changes are needed in the IEP.
autistic disorder 37

A child under three years of age with autism and in making friends. Although higher function-
should be eligible for an early-intervention program ing children may be able to handle academic work,
available in every state. The services provided are they, too, need help to organize tasks and avoid
then written into an INDIVIDUALIZED FAMILY SERVICE distractions. During middle and high school years,
PLAN (IFSP) that is reviewed at least once every six instruction will begin to include practical matters
months. The plan will describe services that will be such as work, community living, and recreational
provided to the child but will also describe services activities, and include work experience, using pub-
for parents, to help them in daily activities with lic transportation, and learning skills that will be
their child, and for siblings, to help them adjust to important in community living. While some autis-
having a brother or sister with autism. tic behaviors improve during the teenage years,
Children older than three usually do best with others may get worse. Increased autistic or aggres-
school-based,/individualized/special/education, sive behavior may be one way some teens express
either in a segregated class with other children with their newfound tension and confusion. At an age
autism, or in an integrated class with children with- when most teenagers are concerned with popular-
out disabilities for at least part of the day. All should ity, grades, and social skills, teens with autism may
provide a structure that will help the children learn realize they are different from their peers. Unlike
social skills and functional communication. Teach- their classmates, they may not have friends, they
ers often involve the parents, giving useful advice may not date, or they may not be planning a career.
in how to help their child use the skills or behaviors For some, the sadness that comes with such real-
learned at school when they are at home. ization motivates them to learn new behaviors and
After the preschool years, more severely acquire better social skills.
impaired children may continue to require a struc- Treatment is most successful when geared toward
tured, intensive education and behavior program the individual’s particular needs. An experienced
with a one-on-one teacher to student ratio. How- specialist or team should design the individualized
ever, children with fewer impairments may do well program, which may include APPLIED BEHAVIOR ANAL-
in a normal education environment with appropri- YSIS, DISCRETE TRIAL TRAINING, OCCUPATIONAL THERAPY,
ate support and accommodations. PHYSICAL THERAPY, speech language therapy, and
In elementary school, the child should receive medication. Other, more controversial treatments
help in any skill area that is delayed and be encour- may include SENSORY INTEGRATION, dietary interven-
aged to grow in his or her areas of strength. The tions, vitamins and supplements, music therapy,
classroom environment should be structured so VISION THERAPY, or AUDITORY INTEGRATION TRAINING.
that the program is consistent and predictable. Stu- Behavioral techniques Most autism experts
dents with autism learn better and are less confused agree that behavioral interventions involving one-
when information is presented visually as well as on-one interactions are usually beneficial and can
verbally. Interaction with nondisabled peers is also sometimes have very positive results in children
important, for these students provide models of with autistic disorder. A number of behavioral
appropriate language, social, and behavior skills. To modification therapists have been used effectively
overcome frequent problems in generalizing skills in children with autistic disorder to improve symp-
learned at school, it is very important to develop toms of inappropriate, repetitive, and aggressive
programs with parents, so that learning activities, behavior and to provide autistic patients with skills
experiences, and approaches can be carried over they need to function. Most types of behavior ther-
into the home and community. Ideally, the cur- apy are based on the theory that rewarded behavior
riculum should be adapted to the individual child’s is more likely to be repeated than behavior that is
needs. Many schools today have an inclusion pro- ignored.
gram in which the child is in a regular classroom Behavioral interventions should involve a sub-
for most of the day, with special instruction for stantial amount of time each week, between 20
a part of the day. This instruction should include to 40 hours, depending on whether the child is
such skills as learning how to act in social situations in school. These methods focus on prompting as
38 autistic disorder

much as necessary to achieve a high level of suc- niques; qualified behavior consultants often hold
cess, with a gradual fading of prompts, and must workshops on how to provide ABA therapy.
include proper training of therapists and ongo- In one study published by Dr. Lovaas at UCLA,
ing supervision. Effective behavior therapy also trained graduate students spent two years of inten-
involves regular team meetings to maintain consis- sive, 40-hour-a-week behavioral intervention
tency between therapists and check for problems. It working with 19 young autistic children rang-
is most important that therapists keep the sessions ing from 35 to 41 months of age. Almost half of
fun for children, in order to maintain their inter- the children improved so much that they became
est and motivation. These comprehensive behav- indistinguishable from typical children, and these
ioral treatment programs show promise in helping children went on to lead fairly normal lives. Of the
children with autism learn the skills they need to other half, most had significant improvements; a
develop and interact with the world, and many few did not improve very much.
new approaches are being designed and tested, Several other types of training are based on the
some of which focus on reshaping a child’s learning principles of ABA, including discrete trial training
environment, while others seek to match treatment (DTT), which has been shown in multiple studies
to a child’s individual needs. to significantly improve symptoms among children
In general, behavior management therapy with autistic disorder. This type of teaching breaks
works to reinforce wanted behaviors and reduce a learning task into tiny components, uses posi-
unwanted behaviors. At the same time, these meth- tive reinforcement to teach each part in isolation,
ods also suggest what caregivers should do before or and provides the child with the level of repetition
between episodes of problem behaviors and what to and rehearsal necessary to acquire each subskill.
do during or after these episodes. Typically, behav- However, well-designed ABA programs should not
ior modification involves highly structured, skill- exclusively use DTT. Rather, they should incor-
oriented activities based on a patient’s needs and porate other ABA techniques, such as methods of
interests that requires intense, one-on-one training generalizing skills to the natural environment.
with a therapist and extensive involvement of the Relationship development intervention (RDI)
caregiver (usually the parent). is a new method that focuses on teaching children
Applied behavioral analysis (ABA). This is the most with autistic disorder specifically how to develop
well researched of all behavioral treatment meth- relationships, first with their parents and later with
ods for autistic disorder. In this approach developed their peers. It directly addresses the development of
by autism expert Ivar Lovaas and his colleagues at social skills and friendships.
the University of California at Los Angeles (UCLA), TEACCH This commonly used intervention
therapists work intensely, one-on-one, with a child program, developed from the field of special edu-
for 20 to 40 hours a week. Children are taught skills cation, is called the Treatment and Education of
in a simple step-by-step manner, such as teaching Autistic and Related Communication Handicapped
colors one at a time. The sessions usually begin Children (TEACCH). This method emphasizes the
with formal, structured drills, such as learning to use of a structured environment using one-on-one
point to a color when its name is given, and then, teaching in classrooms that provide visual cues on
after some time, there is a shift towards generaliz- how to complete tasks. TEACCH also encourages
ing skills to other situations and environments. The children to be more independent by teaching them
goal of this type of behavioral management is to to use newly mastered skills in less-structured envi-
reinforce desirable behaviors and reduce undesir- ronments, such as mainstream classrooms. Class-
able ones. rooms using TEACCH components incorporate
ABA programs are most effective when started visual cues, a high level of structure and routine,
before age five, although they can be helpful with and other environmental accommodations to max-
older children. ABA programs are especially effec- imize a child’s success.
tive in teaching nonverbal children how to talk. This program was developed at the University
Parents are also encouraged to learn ABA tech- of North Carolina/Chapel Hill in 1971 by devel-
autistic disorder 39

opmental psychologist Eric Schopler to provide the disorder. They may also help people to better
a structured learning environment for children use words and sentences and to improve rate and
with autism as a way of improving their strengths rhythm of speech and conversation.
and independence. The multidisciplinary program This type of treatment may help many autistic
involves the family and community in an intensive children, especially if it is integrated with other
treatment regimen—five hours a day, five days a home and school programs. This works particu-
week—in a TEACCH classroom. larly well in children with autistic disorder who
Floor time This type of treatment involves an also have APRAXIA, a phonological disorder, or
informal play session between a child and a part- other language-specific difficulties. Sign language
ner, which uses interactive experiences to enable or a pictorial exchange communication method
a child to move along to the next developmental may be very helpful in developing speech in autis-
stage. Floor time was developed by psychiatrist tic individuals.
Stanley Greenspan, M.D., as part of his Develop- Some speech-language pathologists provide AUDI-
mental Individual Difference Relationship-Based TORY INTEGRATION TRAINING (AIT), which involves
Model (DIR)—an alternative to the behaviorism listening to processed music for a total of 10 hours
approach based more on relationships. Floor time (two half-hour sessions per day, over a period of 10
lets a child be the boss. During floor time, parents to 12 days). This controversial research has been
should do what their child wants to do, playing inconclusive, although anecdotal reports suggest
eye-to-eye with the child, allowing him or her to that AIT improves auditory processing, decreases or
take the lead as parents try to open and close as eliminates sound sensitivity, and reduces behavioral
many “circles of communication” as possible. problems in some autistic children. The American
Social skills training People with high-func- Academy of Pediatrics also discourages the use of
tioning autistic disorder can benefit from special AIT, citing the lack of any empirical evidence that
training in understanding the unwritten social rules it is effective.
and body language signals that people use in social Computer-based auditory interventions help
interaction and conversation. Social “scripting” can children who have delays in language and have
be used to teach appropriate responses and prepare difficulty discriminating speech sounds. However,
the individual for transitions. In very young chil- research into these interventions has primarily been
dren, they may be in the form of photographs or conducted with children with dyslexia rather than
pictures. autistic disorder and has mainly been conducted by
Relationship development intervention (RDI) is a new the company producing the program.
method that teaches children with autistic disorder Picture exchange communication systems (PECS)
specifically how to develop relationships, first with This type of treatment helps people with autism com-
their parents and later with their peers. It directly municate using pictures that represent ideas, activities, or
addresses the development of social skills and items. The patient is able to convey requests, needs, and
friendships. desires to others by handing them a picture.
Speech-language therapy The field of speech- Physical and occupational therapy Often, chil-
language pathology offers numerous approaches dren with autism have limited gross and fine motor
to improve a child’s language, which is one of the skills, so physical therapy can be helpful in these
primary problems in autistic disorder. Speech- cases. Physical therapy is used to improve problems
language therapists can help people with autism with gross motor skills, such as walking, running,
improve their general ability to communicate and and climbing stairs. Although these skills are typi-
interact with others effectively, as well as develop cally not impaired in children with autistic disorder,
their speech and language skills. Therapists may a physical therapist should be included if a child
teach nonverbal ways of communicating (such with autistic disorder also has other disabilities,
as sign language) and may improve social skills such as cerebral palsy.
that involve communicating with others to initi- Occupational therapists can help people with
ate language development in young children with autism find ways to adjust tasks and conditions
40 autistic disorder

that match their needs and abilities. Such help by altering the level of neurotransmitters in the
may include finding a specially designed computer brain.
mouse and keyboard to ease communication or Medication can improve the behavior of a per-
identifying skills that build on a person’s interests son with autism. Health-care providers often use
and individual capabilities. medications to deal with a specific behavior, such
Because many autistic individuals have mild as reducing self-injurious behavior. As these symp-
to severe sensory problems, some experts believe toms are minimized, the person with autism can
they may respond to sensory integration training focus on other things, including learning and com-
as taught by occupational thearpists. The field of munication. Some of these medications have seri-
occupational therapy offers strategies to improve ous risks involved with their use; others may make
problems with fine motor and adaptive skills, symptoms worse at first or may take several weeks
such as dressing, eating, and writing, that are to become effective. Not every medication helps
sometimes seen in children with autistic disorder. every person with symptoms of autism.
For example, these children may be either over- Health care providers usually prescribe medica-
or undersensitive to sound, sight, smell, touch, tions on a trial basis, to see if they help. A child’s
and taste. This is a type of behavior modification health-care provider may have to try different dos-
that focuses primarily on stimulating the senses ages or different combinations of medications to
of motion/ balance, touch, and joints and liga- find the most effective plan. Families, caregivers,
ments (proprioception). In an attempt to address and health-care providers need to work together to
these difficulties, some occupational therapists make sure that medications are working and that
use a controversial treatment called sensory inte- the overall medication plan is safe.
gration therapy (SIT), which focuses primarily Use of any one particular medication is typically
on stimulating these senses. Sensory integration based on a specialized physician’s (such as a psy-
therapists teach techniques to provide a “sensory chiatrist, developmental-pediatrician, or pediatric
diet” for children by touching their skin, dress- neurologist) evaluation of the patient’s symptoms.
ing them in specially weighted vests, swaddling, Dosages need to be adjusted differently for each
providing deep-pressure squeezes, swinging, and person, and one medication may be ineffective or
so on. have negative effects, while others are helpful. For
While many experts believe there is no sound some classes of drugs the doses that successfully
research supporting SIT, repeated exposure to ease symptoms may be much lower for those with
various forms of sensory input may desensitize autistic disorder than for healthy people.
children with autistic disorder, allowing them Psychiatric medications are widely used to treat
to better tolerate specific stimuli that previously the symptoms of autistic disorder, and they can
caused distress. However, although sensory inte- be beneficial to many older children and adults.
gration therapy techniques are common in some However, there are concerns over their use, and
school settings, the American Association of there is relatively little research on their effects in
School Psychologists does not recommend their children with autistic disorder. There are almost
use, and the National Academy of Sciences cites no studies on the long-term effects, especially for
the lack of any sound scientific evidence for this the newer medications, and there is a concern
intervention. that their long-term use in children may affect
Medication Although there are no medica- their development. Because these drugs treat the
tions specifically designed to treat autism, there are symptoms, but not the underlying biomedical
many psychiatric medications used to treat specific causes of autism, it is important to balance risk
symptoms often found in autism, such as aggression, versus benefit.
self-injury, anxiety, depression, obsessive-compulsive Antidepressants are used to treat depression,
disorder, and attention deficit hyperactivity dis- obsessive-compulsive behavior, and anxiety that
order (ADHD). These medications generally work may appear in people with autism. In addition, these
autistic disorder 41

drugs may reduce the frequency and intensity of The DEFEAT AUTISM NOW! (DAN!) Program fea-
repetitive behavior; ease irritability, tantrums, and tures nutritional support, diet changes, and detoxi-
aggression; and improve eye contact and respon- fication aimed at addressing core problems of autism
siveness. In particular, selective serotonin reuptake rather than symptoms. Some of the major interven-
inhibitors (SSRIs) are the newest group of antide- tions suggested by DAN! practitioners include
pressants that treat problems such as obsessive-
compulsive behaviors and anxiety, resulting from • nutritional supplements, including certain vita-
an imbalance in one of the body’s chemical systems mins, minerals, amino acids, and essential fatty
that are sometimes present in autism. These medi- acids
cations may reduce the frequency and intensity of • special diets totally free of gluten (from wheat,
repetitive behaviors; decrease irritability, tantrums, barley, rye, and possibly oats) and free of dairy
and aggressive behavior; and improve eye contact. (milk, ice cream, yogurt, and so on)
SSRIs include fluvoxamine (Luvox), fluoxetine
• testing for hidden food allergies, and avoidance
(Prozac), and bupropion (Wellbutrin). Tricyclics are
of allergenic foods
another type of antidepressant used to treat depres-
sion and obsessive-compulsive behaviors. Although • treatment of intestinal yeast overgrowth
these drugs tend to cause more side effects than the • detoxification of heavy metals
SSRIs, sometimes they are more effective for cer-
tain people. While the use of dietary modifications and sup-
Antipsychotic medications may help control hyperac- plements to treat autism is controversial, chang-
tivity, behavioral problems, withdrawal, and aggres- ing the diet or adding vitamin supplements may
sion sometimes experienced by people with autism improve digestion and eliminate food intolerances
by affecting the brain of the person taking them. or allergies, which may contribute to behavioral
Antipsychotics include clozapine (Clozaril), RISPERI- problems in autistic patients.
DONE (Risperdal), olanzapine (Zyprexa), and que- Studies have found high levels of proteins from
tiapine (Seroquel). Use of this group of drugs is the wheat, oats and rye (gluten), and casein (protein
most widely studied treatment for autism. In some in dairy products) byproducts in patients with
people with ASDs, these drugs may decrease hyper- autism, suggesting that the incomplete breakdown
activity, reduce stereotyped behaviors, and minimize or excessive absorption of these substances may
withdrawal and aggression. affect brain function. However, cutting out food
Benzodiazepines can be used to treat behavioral containing gluten and casein may cause side effects
problems, panic, and anxiety sometimes found in and should not be done without the advice of a
people with autism. Benzodiazepines include diaze- health-care practitioner. Nevertheless, eliminating
pam (Valium), lorazepam (Ativan), and alprazolam dietary gluten/casein for some children has imme-
(Xanax). Discontinuing these drugs after long-term diate and startling effects obvious to their par-
use may cause withdrawal symptoms. ents within hours or days. Children who seem to
Biomedical intervention Biomedical interven- respond most dramatically to the removal of dairy
tion typically refers to a variety of controversial have a history of ear infections, inconsolable cry-
treatments, including numerous vitamins and ing, poor sleeping patterns, and excessive craving
nutritional supplements, special dietary interven- of milk and dairy foods. Gluten intolerance is gen-
tions that restrict certain types of foods, agents erally indicated by loose stools and/or a craving for
designed to remove heavy metals from the body, bread and pasta.
medications that treat yeast or fungi, and medica- Because this is a relatively harmless interven-
tions whose use in children with autism has not tion, some experts suggest it should be attempted
been thoroughly investigated. These treatments are as soon as possible after a diagnosis to see if a child
often used by doctors who focus on a biomedical does respond. If so, further exploration into bio-
explanation of autistic disorder. chemical treatment is recommended.
42 autistic savant

Some studies have suggested that vitamin B, Adults with autism may live in a variety of residen-
magnesium, and cod liver oil supplements may tial settings, ranging from an independent home or
improve behavior, eye contact, attention span, and apartment to group homes, supervised apartment
learning in patients with autism. Vitamin C may settings, other family members or more structured
improve depression and ease symptoms in patients residential care. More and more support groups for
with autism. adults with autism are appearing, and many indi-
Vision therapy More recently, some optom- viduals are forming their own networks to share
etrists have become involved in the treatment of information, support each other, and speak for
autistic disorder. Referred to as “developmental themselves.
optometrists,” they offer controversial vision ther- Individuals with autistic disorder are providing
apy, including techniques such as prisms, special valuable insight into the challenges of this disabil-
lenses, and vision exercises. Pediatricians and oph- ity by publishing articles and books and appearing
thalmologists typically discourage vision therapy, on TV to discuss their lives and disabilities. The
citing lack of any research. prognosis for individuals depends on the degree of
Supplemental therapy Additional supplemen- their disabilities and on the level of therapy they
tal therapies include music therapy, art therapy, receive.
and animal therapy. Some children with autistic See also ACHENBACH CHILDHOOD BEHAVIOR
disorder do seem to respond to these treatments, CHECKLIST; AUTISM BEHAVIOR CHECKLIST; AUTISM
although they should be considered a supplemen- DIAGNOSTIC INTERVIEW–REVISED.
tary intervention rather than a primary mode of
treatment.
Contrary to popular belief, many children and autistic savant An individual with AUTISTIC DISOR-
adults with autism can make eye contact and DER who displays unusual aptitude for one or more
can show affection and demonstrate a variety specific skills, such as math calculations, musical
of other emotions in varying degrees. Like other ability or superior memory for particular facts. In
children, they respond to their environment in the past, individuals with these exceptional skills
both positive and negative ways. Although there were called idiot savants, but this pejorative descrip-
is no “typical” type of person with autism, chil- tion was changed after a 1978 article in Psychology
dren with autism can learn and function produc- Today, when Dr. Bernard Rimland introduced the
tively and improve with appropriate education term “autistic savant.” Other experts prefer the
and treatment. term “savant syndrome,” because individuals with
With appropriate treatment, some behaviors other developmental disorders besides autism also
associated with autistic disorder may lessen over can have savant skills.
time. Although communication and social prob- About 10 percent of all people with autistic dis-
lems will continue in some form throughout life, order are savants, but only about 1 percent of peo-
difficulties in other areas may improve with age, ple with other developmental disorders, including
education, or diminished stress level. Many indi- those with mental retardation, have savant skills.
viduals with autistic disorder enjoy their lives and Since other developmental disabilities are much
contribute to their community in a meaningful more common than autistic disorder, however,
way, as they learn to compensate for and cope with about half of those with savant syndrome have
their disability. autistic disorder, and the other half have some
Some adults with autistic disorder live and work other form of developmental disability, mental
independently in the community, and can drive a retardation, or brain injury or disease. Thus, not all
car, earn a college degree, and even get married. savants are autistic, and not all autistic persons are
Some may only need some support for particu- savants.
larly stressful experiences, while others require a The most common types of savant abilities are
great deal of support from family and professionals. called “splinter skills,” and include behaviors such
aversive techniques 43

as obsessive preoccupation with and memoriza- Autistic savants occasionally may display other
tion of material such as sports trivia, license plate skills, including the ability to easily learn a variety
numbers, maps, historical facts, or odd things such of foreign languages or other unusual language
as airplane motor sounds. “Talented savants” are skills, exquisite smell or touch discrimination,
those who have musical, artistic, mathematical, or perfect appreciation of passing time without
other special skills, usually within one area. “Pro- access to a clock face, or profound knowledge in a
digious savants” have a very rare ability in which specific field, such as neurophysiology, statistics,
their special skill is so outstanding that it would be or history.
spectacular even if it were to occur in a nonhandi- While always controversial, there have been
capped person. There are fewer than 50 prodigious some reports that a few savants appear to demon-
savants in the world today who would meet this strate extrasensory perception skills.
high standard. Typically, one of these unique skills appears in
Savant skills are usually limited to certain each person with savant syndrome, although some-
areas of expertise: music, art, quick calculation or times one person may experience multiple skills.
other mathematical skills, calendar calculating, No matter what type of skill, it is always combined
and mechanical/spatial skills. Calendar calculating with prodigious memory.
appears to be an ability developed almost exclu- The reason some autistic individuals have savant
sively among savants. abilities is not known, but the syndrome occurs four
Music is the most common savant skill, usually to six times more often in boys than girls. This is prob-
involving an ability to play the piano by ear or ably due to the fact that autistic disorder likewise has
sing with perfect pitch. Although musical perfor- the same disproportionate male/female ratio.
mance skills are most typical, some savants are The condition can be congenital (genetic or
outstanding composers, usually linked to per- inborn), or can be acquired later in childhood,
formance ability. In fact, the triple syndrome of or even in adults, but the extraordinary skills are
mental disability, blindness, and musical genius always linked with an incredible memory of a spe-
has occurred with an unusual frequency during cial type—extremely deep but very, very narrow.
the past 100 years.
The next most common savant skill is artis-
tic talent (often in the form of painting, drawing, autoimmune system disorder An increasing
or sculpting). Extremely fast calculating or other number of studies have found that individuals with
mathematical skills, such as the ability to figure out autism may have problems with their immune sys-
multi-digit prime numbers despite being unable to tems. Some scientists describe autism as an autoim-
perform even the most basic adding or subtracting, mune system disorder.
is also common. Some experts believe that autism may occur
Mechanical ability (especially repairing intricate when a person’s immune system is compromised
machines) or unusual spatial skills such as intricate due to inherited abnormal genes, exposure to
map and route memorizing are seen somewhat less chemicals, or both; born with this predisposition,
frequently. exposure to an additional environmental insult
Calendar calculating is common among savants, could then lead to autism.
particularly considering how rare this obscure
ability is in the general population. Beyond being
able to name the day of the week that a date will aversive techniques A behavioral method that
occur on in any particular year, calendar calculat- uses unpleasant punishment to decrease or elimi-
ing includes being able to name all the years in the nate problem behaviors. Aversive methods are
next 100 in which Easter will fall on March 23, for primarily used to treat only severe self-injurious
example, or all the years in the next 20 when July behavior and should only be used when nonaver-
4 will fall on a Tuesday. sive techniques have been unsuccessful. Aversive
44 aversive techniques

techniques may be used when individuals cause niques are often less successful than reinforcement
extreme harm to themselves, such as biting or hit- strategies, aversive techniques are typically com-
ting themselves or banging their heads hard enough bined with positive reinforcement of alternative
to cause tissue damage. Because punishment tech- desired behavior.
B
basic skills Fundamental abilities necessary to change an individual’s reaction to a situation. There
function on a daily basis. The mastery of basic skills are two major approaches to behavior modification,
is necessary to progress to higher levels of achieve- one based on the work of the late psychologist B. F.
ment. These abilities include self-care activities, Skinner, the other based on the work of psycholo-
such as using the toilet, dressing, grooming, eating, gist Albert Bandura.
cooking and cleaning. Academically, basic skills Skinner believed that all behavior is learned by
include speaking, spelling, reading, writing, and interacting with the environment, and that bad
arithmetic. behavior is learned the same way normal behavior
is learned. Skinner believed that rewarded behav-
ior is likely to be repeated, and punished behavior
behavioral therapy A goal-oriented, generally is likely to be avoided. Therefore, a behavior modi-
short-term method using in treating autistic indi- fication program should establish a program that
viduals. This type of therapy can help people change rewards specific desired behaviors.
the way they act, feel, or think when dealing with Bandura’s approach emphasizes learning through
particular troublesome circumstances. Behavior imitation, believing that a person can learn to avoid
therapists usually focus on the current situation, an unpleasant situation without experiencing it.
rather than the past. Individuals can also learn new skills by watching
Types of behavioral therapy used to treat people and imitating others. Bandura emphasized the
with autism include APPLIED BEHAVIORAL ANALYSIS effectiveness of role models who speak and act
(ABA), and DISCRETE TRIAL TRAINING (DTT). consistently, and this applies especially to young
The method arouses controversy in cases in children.
which punishment and aversives are used to Behavioral modification programs for children
decrease self-destructive behaviors. with autism are based on training the child to
behave in a more appropriate and socially accepted
manner. This typically consists of an immediate cor-
behavior modification The systematic application rection of any aberrant behavior. Many of the most
of reinforcers (rewards) and/or punishments as a difficult behaviors, if dealt with early, may become
way of reducing or eliminating problem behavior, controlled; if neglected, these behaviors can lead to
or to teach people new skills or responses. Behav- wild, impulsive, uncontrollable behavior that may
ior modification is based on the idea that since all require institutionalization. Modeling specific social
behavior is learned, with appropriate treatment it skills or strategies, communication patterns, and
also can be unlearned by using positive or negative other positive behavior is especially important for
consequences. Many autism experts believe that children with autism, who require specific direct
the most appropriate education for children with instruction as well as consistent modeling.
autism includes early, intensive behavior modifica-
tion therapy.
Behavior modification is used by psychologists, benzodiazepines A class of drugs such as diaze-
social workers, teachers, and other professionals to pam (Valium), lorazepam (Ativan), and alprazolam
45
46 Bérard, Guy

(Xanax) that may be used to treat behavioral prob- sitive, or hyperacoustic, hearing. Often misdiag-
lems in people with autism. nosed as autistic, he believed that many children
with learning disabilities are trapped in a world of
Side Effects hypersensitivity to sound, confusing brain stimuli,
Side effects include drowsiness, fatigue, lack of and frequency imbalances between the right and
muscle coordination (ataxia), and dizziness. Dis- left ear. He believes that exercising the middle-ear
continuing these drugs after long-term use may mechanism by using modulated and filtered music
cause withdrawal symptoms including abdominal may produce improvement in patients with a wide
and muscle pain, convulsions and tremors, insom- variety of learning and speaking problems.
nia, sweating, or vomiting. It is not clear what the minimum age should be
to receive AIT, but current recommendations set the
minimum age at three years. If the child is an appro-
Bérard, Guy A French ear, nose, and throat doc- priate candidate, the only behavioral requirement is
tor who developed an auditory training program that he or she accepts headphones. Each client starts
(Bérard AIT) in the early 1950s. His idea was to train with a behavioral profile and audiogram, together
the brain to identify the important sounds coming with counseling before and after the sessions over
into the ear and ignore the secondary noises. a course of 10 days. Although the program typically
Bérard learned about an auditory stimulation involves listening to processed music for a total of 10
intervention called the Audio-Psycho-Phonology hours (two half-hour sessions per day, over a period
approach (or the TOMATIS METHOD), which was of 10 to 12 days), at some AIT clinics, it is acceptable
developed by the late Dr. Alfred Tomatis. Bérard to have a one- or two-day break after five days of
worked with Tomatis for a short period of time, listening. During the listening sessions, the person
eventually leaving because he felt the Tomatis listens to processed music. That is, the AIT sound
method was inefficient and incorrectly focused on amplifier attenuates low and high frequencies at
the emotional aspects of hearing. random from the compact discs and then sends this
See also BÉRARD AUDITORY INTEGRATION TRAINING. modified music through headphones to the listener.
This random selection of frequencies is termed mod-
ulation. Follow-up profiles of each participant are
Bérard Auditory Integration Training (Bérard made to judge behavioral changes.
AIT or AIT) A controversial treatment program Activities can be done during and after the 10
for people with autism that involves listening to days of AIT to help the individual integrate and
processed music for a total of 10 hours (two half- adjust to the changes derived from AIT. Many
hour sessions per day, over a period of 10 to 12 practitioners recommend participation in sen-
days). The experimental program uses sound and sory integration activities even during the 10-day
tone variations fused into classical music to unravel period of AIT and in the following weeks to help
problems common to people with autism. Each reduce any irritability and hyperactivity that may
special compact disc features a gradual change in occur and may help reorganize the system more
the peaks and pitch of sound filtered through the quickly.
music. The goal is to hit “receptor points” within
the ear. However, there are no documented studies
that show a decrease in behavior problems. Bettelheim, Bruno (1903–1990) A controversial
Guy Bérard, a French ear, nose and throat doc- child psychologist who believed that the symptoms
tor, first developed the program in the early 1950s of autistic children were caused by a cold unlov-
as a way of training the brain to identify the impor- ing mother and an absent father and that the lack
tant sounds coming into the ear and ignore the sec- of early emotional stimulation damaged the central
ondary noises. In his research, Dr. Bérard observed nervous systems of these children.
that many of those suffering from some forms of Bettelheim received his doctoral degree in phi-
neurological disorders appeared to have very sen- losophy in 1938 from the University of Vienna, and
brain 47

was subsequently imprisoned in Dachau and Buch- developed by the late Dr. Kiyo Kitahara of Tokyo,
enwald during the Nazi occupation of Austria. After Japan. Dr. Kitahara’s method provides children
emigrating to the United States in 1939, he taught with systematic education through group dynam-
psychology at the University of Chicago from 1944 ics and a combined program of academics and
to 1973 and directed the Chicago-based Orthogenic technology, arts, music, and physical education.
School for children with emotional problems, plac- The goal of this educational approach is for indi-
ing special emphasis on the treatment of autism. viduals to achieve social independence and dignity
Although untrained in analysis, Bettelheim con- and to benefit from and contribute to society. The
sidered himself a Freudian fundamentalist who, in school also tries to promote autism education and
spite of overwhelming evidence to the contrary, was research through the Higashi Institute for Profes-
convinced that autism had no organic basis but that sional Development.
it was caused by parents who hated their children.
He believed the only way to treat autism was to
separate the autistic child from his parents (a pro- brain The brain is the major organ of the human
cess he called “parent-ectomies”). Bettelheim then nervous system, part of a complex network of nerve
advocated nurturing the children with positive cells and fibers responsible for controlling all the
experiences until they felt comfortable enough to processes in the body and the main orchestrator of
stop being autistic. After his death, however, sev- thought, speech, emotion, and memory. Sensations
eral of the children in his school accused him of from nerves extending from the central nervous
abusive treatment, and his detractors charged that system to every other part of the body are received,
much of his educational background was invented. sorted, and interpreted by the brain.
Although his theories on autism have been dis- The brain is split into two halves, known as the
credited, he did write several well-known books left and the right hemispheres. They are separated
on child development, including The Informed Heart by a groove called the corpus callosum, a closely-
(1960), The Empty Fortress (1967), and The Uses of packed bundle of fibers that connect the right and
Enchantment (1976). A depressed individual for left sides and allow the two hemispheres to commu-
most of his life, Bettelheim died by suicide in 1990, nicate. Although the two halves look identical, in
six years after his second wife died of cancer. fact they are specialized to perform different func-
tions, and they control different parts of the body.
The left side of the brain controls movements in
body language Physical movements that express the right side of the body, and the right brain con-
emotion and modify communication. People with trols the left side. This is because the nerves to each
AUTISTIC DISORDER have a very hard time decipher- side of the body cross over at the top of the spinal
ing the body language of others, which interferes cord. Although the two hemispheres are linked by
with their social skills and communication. At the the corpus callosum and share information, one
same time, it can be difficult to understand the half of the brain is always considered “dominant.”
body language of a person with autism. Most peo- Right-handed people almost always have a domi-
ple smile, for example, when talking about things nant left hemisphere. Left-handed people probably
they enjoy, or shrug when a question cannot be have a dominant right hemisphere. In addition,
answered. But the facial expressions, movements, each half of the brain specializes in certain areas.
and gestures of people with autism may not match The right hemisphere controls visual-spatial skills
what they are saying. Their tone of voice also may such as painting, music, and creative activities,
fail to reflect their feelings. recognizing faces, shapes, and patterns, and judg-
ing size and distance. It is also considered to be the
seat of imagination, emotion, and insight. The left
Boston Higashi school An international pro- hemisphere is the center of speaking, reading, writ-
gram serving children and young adults with ing, and understanding language, and many aspects
autism based upon the tenets of DAILY LIFE THERAPY of mathematics, such as performing calculations. It
48 brain and autism

is considered to be the logical, problem-solving side bones of the skull lying above them: the frontal,
of the brain. parietal, temporal, and occipital lobes. The frontal
On each side of the brain are three main areas: lobe is considered to be the seat of a person’s per-
the extension of the spinal cord deep within the sonality and the critical area for thought. Within
brain called the brain stem; the CEREBELLUM; and the parietal lobe are areas that control the sensa-
the cerebrum. tions of pain, itching, heat, and cold. It is the occipi-
The brain stem controls basic body functions like tal lobe’s job to interpret what a person sees. The
heart rate and breathing that are responsible for temporal lobe contains the auditory cortex, which
life and typically operates without any conscious is responsible for hearing.
control. It serves as a relay station, passing mes- See also BRAIN AND AUTISM.
sages between various parts of the body and the
cerebral cortex. It is made up of the midbrain, the
medulla, and the pons. Right behind the brain stem brain and autism Scientists have only recently
is the small, apricot-sized cerebellum, responsible been able to study the brains of patients with autism
for controlling coordination and balance and for with the emergence of new brain imaging tools,
fine-tuning a person’s motor activity, body move- including computed tomography (CT), positron
ments, and the muscles used in speaking. The larg- emission tomography (PET), single photon emis-
est area of the brain is the cerebrum, whose four sion computed tomography (SPECT), and magnetic
sections completely wrap around the midbrain. It resonance imaging (MRI).
is this area that handles conscious and complicated Postmortem and MRI studies have shown that
jobs like thinking, speaking, and reading. many major brain structures are implicated in
The gray outer surface of the cerebrum, as autism, including the cerebellum, CEREBRAL COR-
wrinkled as a walnut, is the CEREBRAL CORTEX. It TEX, limbic system, corpus callosum, basal ganglia,
is in the cortex that sensory messages are received and brain stem. The cerebral cortex is responsible
and interpreted, and where all the brain’s orders for the higher mental functions, general move-
are sent. The cerebral cortex is responsible for the ment perception, and behavioral reactions—all
higher mental functions, general movement per- areas that may cause problems for people with
ception, and behavioral reactions—all areas that autism. Other research is focusing on the role of
may cause problems for people with autism. While neurotransmitters such as serotonin, dopamine,
its wrinkled surface does not take up much space and epinephrine.
within the skull, if it were flattened out the cerebral Recent neuroimaging studies have shown that
cortex would cover an average office desk. a contributing cause for autism may be abnor-
Deep within the brain, in front of the brain mal brain development beginning in the infant’s
stem, are a variety of structures of crucial impor- first months. This “growth dysregulation hypoth-
tance in maintaining body functions, including the esis” holds that the anatomical abnormalities seen
thalamus, hypothalamus, pituitary gland and basal in autism are caused by genetic defects in brain
ganglia. The basal ganglia is a gray mass deep in growth factors. It is possible that sudden, rapid
the cerebral hemisphere that serves as a connec- head growth in an infant may be an early warning
tion between the cerebrum and cerebellum. It also signal that will lead to early diagnosis and effec-
helps regulate automatic movements. tive biological intervention or possible prevention
The four lobes of the brain are broad surface of autism.
regions in each hemisphere that are named for the See also BRAIN.
C
case history A record of a person’s family, health, Because the brain carries out many different
developmental, educational, psychological, and social functions, its cells are also specialized. Different
experiences. Typically, the creation of a case history types of neurons are distributed across different
involves the analysis of records as well as interviews layers in the cortex in arrangements that character-
with parents, teachers, and the individual. Case his- ize the several areas of the hemispheres, each one
tories are an important component of assessment in with its own functions.
all cases of learning or psychological difficulty. The cerebral cortex represents in humans a
highly developed structure concerned with the
most familiar functions associated with the human
Center for the Study of Autism A center in Salem, brain, including intelligence and personality, inter-
Oregon, that provides information about autism to pretation of sensory impulses, movement, and the
parents and professionals, and conducts research ability to plan and organize. Its distinctive shape
on the efficacy of various therapeutic interventions. arose during evolution as the volume of the cortex
The center collaborates extensively with the Autism increased more rapidly than the cranial volume, so
Research Institute in San Diego, California. that the entire brain structure folded in onto itself.
For contact information, see APPENDIX I.

Checklist for Autism in Toddlers (CHAT) A


cerebellum A prominent hindbrain structure screening checklist used by general practitioners at
important for coordinating and integrating motor the 18-month well-baby visit to identify children
activity. at risk for social-communication disorders such as
autism. CHAT is based on the well-known behav-
ioral characteristics of autism, and provides an inex-
cerebral cortex The most complex area of the pensive, quick, and easy-to-administer screening
brain, the cerebral cortex is the convoluted covering method. The test is a preliminary screening method
of the two hemispheres also known as gray matter. whose results suggest either that autism is unlikely
The body’s control and information processing cen- or possible (requiring further evaluation).
ter, it is organized into four lobes: frontal, parietal, The CHAT, which was first published in 1992,
occipital, and temporal, each concerned with differ- takes only about five to ten minutes to administer
ent functions. and score. The short screening measure consists of
It is divided into two equal halves (or spheres) two sections: the first nine items are questionnaire
called hemispheres. The left hemisphere processes items filled out by parents, and the last five are obser-
information logically; for example, it helps a per- vations made by a primary health care worker. Key
son read, speak, and write language or compute an items assess behaviors that, if absent at 18 months,
equation. The right hemisphere is responsible for put a child at risk for a social-communication disor-
more processing of spatial information, such as rec- der. These behaviors include joint attention, includ-
ognizing a friend’s face or appreciating a piece of ing “pointing to show,” “gaze-monitoring” (such
artwork. as looking in the direction a parent is looking) and

49
50 chelation

pretend play (such as pretending to pour a beverage compared with others of the same age on anxiety,
from a toy teapot). depression, hyperactivity, and so on. Because it is
There are five key items; children who fail all five helpful on any behavior checklist to obtain input
key items have a high risk of developing autism; from teachers and parents, teacher forms are also
children who fail two items have a medium risk of available. Because each teacher and parent is likely
developing autism. Any child who fails the CHAT to see the student from a different perspective, the
should be screened again about a month later so best overall view of the child’s behavior is obtained
that children who are just slightly delayed are given by comparing many different viewpoints.
time to catch up. Any child who fails the CHAT for a
second time should be referred to a specialist clinic
for diagnosis. Childhood Asperger Syndrome Test (CAST) A
If a child passes the CHAT the first time, no fur- preliminary screening for ASPERGER’S SYNDROME
ther testing is required, but passing the CHAT does developed in the United Kingdom. Most Asperger’s
not guarantee that a child will never develop a syndrome and high-functioning autism screen-
social-communication problem of some type. If the ing tools are designed for use with older children,
CHAT suggests autism is unlikely, it is still impor- and are used to differentiate these disorders from
tant to assess the at-risk child for other develop- other AUTISM SPECTRUM DISORDERS or other devel-
mental or medical problems and continue regular opmental disorders such as MENTAL RETARDATION
periodic surveillance for problems. and language delays. Assessments for Asperger’s
concentrate on social and behavioral impairment
in children four years of age and older—individuals
chelation A series of intravenous infusions con- who usually develop without significant language
taining a synthetic amino acid (EDTA) that will delay. These tests are quite different from assess-
bind with metals and create a compound that can ments designed to be used to screen very young
be excreted in the urine. Because some experts children, highlighting more social/conversational
believe that autism may be linked with excess mer- and behavioral concerns.
cury or other metals, in theory once these metals
are removed, their toxic effects are eliminated, and
the individual with autism should begin to show childhood autism rating scale (CARS) A widely-
improvement. used standardized test specifically designed to help
While chelation therapy has generated a great diagnose autism with children as young as two
deal of publicity within the autism community, the years of age. It also can provide information about
overwhelming opinion of the traditional medical a child’s ability level and learning style, and is used
community is that it is an unproven therapy that as a diagnostic tool for placing a child on the autistic
should be avoided. Chelation is a controversial spectrum.
treatment for individuals with autism, with poten- The test was published in 1980 by Dr. Eric Scho-
tial adverse effects. pler at the University of North Carolina and is
It is not illegal for a physician to prescribe che- intended to be a direct observational tool used by a
lation therapy to treat autism, but without valid trained clinician. It takes about 20 to 30 minutes to
research studies, any treatment that has not been administer, and rates a child in 15 areas on a scale
properly researched should be undertaken with a up to four, yielding a total up to 60.
degree of skepticism. The 15 items of the CARS include

• relationships with people


Child Behavior Checklist A type of behavioral
• imitation
questionnaire that contains a list of behavioral
problems that are rated by the parent as “not true,” • affect
“somewhat true,” or “very true.” Children are • use of body
childhood disintegrative disorder 51

• relation to nonhuman objects CDD was first described in 1908, many years
• adaptation to environmental change before autism, but it has only recently been offi-
cially recognized. This condition resembles autism
• visual responsiveness
and appears only after a relatively prolonged period
• auditory responsiveness of clearly normal development (usually two to four
• near receptor responsiveness years).
• anxiety reaction Although apparently rare, experts believe the
condition probably has often been incorrectly diag-
• verbal communication
nosed. Fewer than two children per 100,000 with
• nonverbal communication AUTISM SPECTRUM DISORDER could be classified as
• activity level having CDD.
• intellectual functioning Several different patterns of this condition have
been identified. CDD may begin slowly or relentlessly.
• general impression
There may be progressive deterioration, develop-
mental plateaus with little subsequent improvement,
A score of 15–29 is considered “non-autistic,” a or—much less often—marked improvement.
score of 30–36 is considered “autistic,” and a score The cause of childhood disintegrative disorder
of 37–60 is considered “severely autistic.” is unknown, but it has been linked to neurological
The CARS may be useful as part of the assess- problems.
ment of children with possible autism in early
intervention programs, preschool developmental Symptoms and Diagnostic Path
programs, and developmental diagnostic centers. CDD occurs most often in boys, with symptoms
Most experts agree it seems to be practical and typically appearing between ages three and four.
well researched, despite the limited research on Until this time, patients develop appropriate skills
its use in children under three years of age and in communication and social relationships for their
the lack of separate norms for individuals of dif- age. In fact, it is this long period of normal develop-
ferent ages. ment before regression that helps differentiate CDD
Because it gives a symptom severity rating, the from AUSTIC DISORDER or RETT DISORDER.
CARS may be useful for periodic monitoring of Symptoms include extensive and pronounced
children with autism and for assessing long-term losses in motor, language, and social skills, includ-
outcomes. It is very important that professionals ing loss of expressive or receptive language, non-
using the CARS have experience in assessing chil- verbal behavior, and play. In addition, the child
dren with autism and have adequate training in develops difficulties in social interaction (failing
administering and interpreting the CARS. to develop friendships and being unable to start
CARS can help collect consistent information to or sustain a conversation) and begins performing
help estimate the prevalence of autism and assess repetitive behaviors similar to those that occur in
functional outcomes, especially if tied to other infor- children with autism. Quite often the child gradu-
mation about interventions and service delivery. ally deteriorates to a severely retarded level.
Once regression begins, the loss of skills such as
vocabulary are more dramatic in CDD than they
childhood disintegrative disorder (CDD) A rare are in classical autism. CDD also is often accompa-
yet serious condition in which a child older than nied by loss of bowel and bladder control, seizures,
age three stops developing normally and regresses and a very low IQ.
to a much lower level of functioning, typically after A doctor makes the diagnosis based on the
a serious illness, such as an infection of the brain symptoms and by ruling out both childhood schizo-
and nervous system. The disorder is associated with phrenia and other pervasive developmental disor-
seizures and is more common in boys. Patients with der such as autistic disorder. The most important
the condition usually require lifelong care. signs of CDD are previously normal development
52 child psychiatrist

through age three to four and then, over a few lance program designed to monitor maternal and
months, a gradual loss of previously established infant health.
abilities. Generally, the diagnosis is made with a
loss of functioning in at least two areas, such as lan- Autism Research and Surveillance
guage, motor, or social skills. The act authorizes the expansion of federal research
on autism. It establishes three regional centers,
Treatment Options and Outlook recognized for their excellence by the Centers for
Childhood disintegrative disorder cannot be specifi- Disease Control and Prevention (CDC), to analyze
cally treated or cured, and most children, particu- information on autism and pervasive developmen-
larly those who are severely retarded, need lifelong tal disabilities, combining clinical and basic research
care. Unfortunately, the prognosis for this disorder in autism. The act increases spending on autism
is limited. The loss of functioning will likely be per- research from $15 million to more than $50 million
manent. However, to some degree, behaviors can per year for five years, and also provides a national
be modified. The available data suggest that gener- physician awareness program. Additionally, it calls
ally the prognosis for this condition is worse than for establishing a program to provide information
that for autism. on autism to health professionals and the general
public, and establishes a committee to coordinate all
autism-related activities within the government.
child psychiatrist A physician who specializes in The Children’s Health Act of 2000 was respon-
the diagnosis and treatment of disorders of think- sible for the creation of the Interagency Autism
ing, feeling, or behavior that affect children, ado- Coordinating Committee (IACC), a committee that
lescents, and their families. Child psychiatrists can includes the directors of five NIH institutes—the
prescribe medication. National Institute of Mental Health, the National
To become a child psychiatrist, the student must Institute of Neurological Disorders and Stroke, the
complete four years of medical school, at least three National Institute on Deafness and Other Commu-
years of residency training in medicine, neurology, nication Disorders (NIDCD), the National Institute
and general psychiatry with adults, and two years of Child Health and Human Development (NICHD),
of training in psychiatric work with children, ado- and the National Institute of Environmental Health
lescents, and their families in an accredited resi- Sciences (NIEHS)—as well as representatives from
dency in child and adolescent psychiatry. the Health Resource Services Administration, the
After completing medical school, graduates must National Center on Birth Defects and Develop-
pass a licensing test given by the board of medical mental Disabilities (a part of the Centers for Dis-
examiners for the state in which they want to work. ease Control), the Agency for Toxic Substances and
Psychiatrists must then take and pass the certifying Disease Registry, the Substance Abuse and Mental
examination given by the Board of Psychiatry and Health Services Administration, the Administra-
Neurology. (In order to be board-certified in child tion on Developmental Disabilities, the Centers for
and adolescent psychiatry, a candidate must first be Medicare and Medicaid Services, the U.S. Food and
board-certified in general psychiatry.) Drug Administration, and the U.S. Department of
Education.
The Committee, instructed by Congress to
Children’s Health Act of 2000 A law enacted develop a 10-year agenda for autism research,
in November 2000 that includes a lengthy list of introduced the plan at the first Autism Summit
provisions to improve the health of America’s Conference in November 2003. The plan indicates
children, including establishment of the National priorities for research for years one to three, years
Center on Birth Defects and Developmental Dis- four to six, and years seven to 10.
abilities; legislation to improve newborn screen- The five NIH institutes of the IACC have estab-
ing, boost autism research and pediatric research lished the Studies to Advance Autism Research
in general; and authorization of a national surveil- and Treatment (STAART) Network, composed
Clemons, Alonzo 53

of eight centers that will support research in the DISORDERS (ASDs). Citalopram also may be appro-
fields of developmental neurobiology, genetics, and priate for children and adolescents who have not
psychopharmacology. Each center is pursuing its responded adequately to other antidepressants of
own particular mix of studies, but there also will this type, especially for easing symptoms overlap-
be multi-site clinical trials within the STAART net- ping with obsessive-compulsive disorder, other
work. The STAART centers are located at Univer- anxiety disorders, or other mood disorders. How-
sity of North Carolina–Chapel Hill, Yale University, ever, controlled studies with larger numbers of
University of Washington, University of California– children and adolescents with ASDs are necessary
Los Angeles, Mount Sinai Medical School, Ken- to more conclusively determine the safety and use-
nedy Krieger Institute, Boston University, and the fulness of this drug in treating ASD symptoms.
University of Rochester. Citalopram belongs to a class of drugs called selec-
A data coordination center will analyze the data tive serotonin reuptake inhibitors (SSRIs)—such
generated by both the STAART network and the as Prozac—traditionally prescribed for depression.
Collaborative Programs of Excellence in Autism The SSRIs also have been shown to significantly
(CPEA). This latter program, funded by the NICHD improve some behavior problems associated with
and the NIDCD Network on the Neurobiology and ASDs such as AUTISTIC DISORDER and ASPERGER’S
Genetics of Autism, consists of 10 sites. The CPEA is SYNDROME.
at present studying the world’s largest group of well- In the nerve cell, serotonin sends messages to
diagnosed individuals with autism characterized by help regulate mood; SSRIs can boost the level of
genetic and developmental profiles. The CPEA cen- serotonin in people with abnormal levels of this
ters are located at Boston University, University of chemical, which can ease depression and symp-
California–Davis, University of California–Irvine, toms of PDDs.
UCLA, Yale, University of Washington, University
of Rochester, University of Texas, University of Side Effects
Pittsburgh, and the University of Utah. Mild side effects might include headache, sedation,
The NIEHS has programs at the Center for Child- or agitation, which are not usually severe enough
hood Neurotoxicology and Assessment, University to make people stop taking the medication.
of Medicine & Dentistry, and the Center for the
Study of Environmental Factors in the Etiology of
Autism, University of California–Davis. Clemons, Alonzo Prodigious AUTISTIC SAVANT who
is a gifted sculptor living in Boulder, Colorado.
A head injury during childhood damaged his
child study committee A group of school mem- brain, changing the way he thought, learned, and
bers who review and decide plans of action for stu- communicated, but also triggering a fascination
dents. Typically, a student is referred to the child with modeling materials and a tremendous drive
study committee because of concerns about school to sculpt. Even in situations where he did not have
performance, either academic or behavioral. The access to modeling clay, his determination to make
committee usually consists of at least three peo- models of animals was so strong that he found
ple, including the school principal or a delegate, materials in his environment that he could use for
the teacher or teachers, and a special educator sculpting.
or school counselor. It also may include a school Soon he was molding clay into amazingly detailed
psychologist, speech/language pathologist, and/or animal figures that he had never seen—yet Alonzo
other specialist. could not even feed himself or tie his shoes. Alonzo
can see a fleeting image on a television screen of
any animal and in less than 20 minutes sculpt a
citalopram An antidepressant drug that in proper perfect replica of that animal in three-dimensional
dosages may be safe and well tolerated in treating accuracy. The wax animal is correct in each and
children and adolescents with AUSTISM SPECTRUM every detail—every fiber and muscle.
54 clinical observation

For more than 20 years he practiced his art in with autistic disorder who also have serious behav-
obscurity, until the early 1980s when the movie ioral disturbances such as aggression or self-injury.
Rain Man, starring Dustin Hoffman as an autistic Clonazepam acts by influencing the action of
man with remarkable memory skills, brought inter- the neurotransmitter GABA (gamma-aminobutyric
national media attention to a phenomenon known acid), a chemical that ferries messages between
as the SAVANT SYNDROME. brain nerve cells; GABA inhibits the transmission of
His world premier at the Driscol Gallery in nerve signals, thereby reducing nervous excitation.
Aspen, Colorado, featured 30 of Alonzo’s bronze With daily use for as briefly as four weeks,
sculptures, portraying the progression from a rough patients may develop tolerance so that larger doses
and primitive style to smooth and elegant fine art. of the drug are needed to achieve the same ben-
Critics believe his greatest work so far is a sculp- eficial effects. Suddenly discontinuing the use of a
ture entitled “Three Frolicking Foals.” The life-sized medication such as clonazepam may cause hyper-
sculpture took just three weeks for Alonzo to cre- excitability, which can lead to serious withdrawal
ate. Since his 1986 premiere exhibit, Alonzo con- symptoms such as convulsions, depression, halluci-
tinues to sculpt and move out into the world; he nations, restlessness, and sleeping problems.
lives in his own apartment in Boulder, and he has
a part-time job as housekeeper in Boulder at the
YMCA. When not busy with those duties, he works clonidine (Catapres) A drug that may be used to
out with weights and other equipment; he has help manage behavior and induce sleep in patients
shared his weight-lifting skills in the Special Olym- with autism. The drug directly affects the brain by
pics competition. mimicking the action of an adrenaline-like chemi-
Gifted Hands, Inc. is now the official representa- cal, which in turn triggers a drop in levels of other
tive and contact point for information about Alonzo adrenaline-like chemicals in the brain (noradrena-
and his works. line and serotonin). Because several studies have
linked autism with neurochemical problems like
this, drugs that act directly on these brain sys-
clinical observation The study and analysis of tems, such as clonidine, appear to decrease at least
a child’s behavior and performance in a clini- some of the aggressive, obsessive-compulsive, and
cal setting. This observation may involve analysis self-stimulating behaviors associated with autism,
of behaviors during testing, mood and behavior according to controlled studies.
during a clinical interview, or the observations of Unfortunately, there are no completely effective,
behavior in more open-ended assessment contexts, reliable drugs for the primary symptoms of autism
such as play in the case of young children. Clinical (such as problems with social situations, communi-
observation is an important component of assess- cation, language, and empathy). What drugs often
ment for autism. can do is ease some of the secondary problems of
autism, such as aggression, self-injury, agitation,
mood instability, and hyperactivity.
clomipramine (Anafranil) A tricyclic antidepres- There have not been many large-scale, con-
sant sometimes used to treat people with autism. trolled studies, but individual reports and small
Although it has shown some positive effects in treat- studies suggest that a variety of drugs may help at
ing some of the behavior problems typical of autism, least some patients. In one small study, clonidine
this compound is not prescribed often to patients seemed to produce a calming effect in many of the
with autism because it is often not well tolerated. nine patients, which improved their ability to inter-
act socially and reduced inattention and repetitive
behaviors. Patients had better social relationships
clonazepam (Klonopin) A benzodiazepine drug and sensory responses, as measured by the REAL
used to treat epilepsy and other convulsive disor- LIFE RATING SCALE, but no significant improvement
ders, ease anxiety, and sometimes help individuals in language and specific sensory motor behavior.
Collaborative Programs of Excellence in Autism 55

Side Effects Examples of cognitive abilities include memory,


The most common side effect is low blood pressure, attention, language development, comprehen-
which could trigger a fainting episode if the per- sion, production, problem-solving, critical analy-
son is anemic or gets tired or hot. Extra care should sis, and concept formation.
be used when combining this drug with another Although it is possible to generalize about the
that also lowers blood pressure. Because of this overall cognitive ability of a child, it is far more
blood pressure-lowering capability, patients who important and valuable to understand the ways
stop taking clonidine must do so slowly to avoid a in which specific cognitive functions interact and
spike in blood pressure; typically, the drug is slowly depend on one another and to assess strengths and
decreased over a two-week period. difficulties in a more specific fashion.
In addition, patients taking clonidine were very
tired and sedated during the first two weeks of
treatment. (The sedation that this drug produces Collaborative Programs of Excellence in Autism
is often the reason this drug is prescribed, espe- (CPEAs) Programs that link 129 scientists from
cially for autistic individuals with trouble falling 23 universities in the United States, Canada, Brit-
asleep.) ain, and five other countries with more than 2,000
Less common side effects include dry mouth, families of people with autism. The CPEAs were
confusion, and depression. originally included in an international Network on
the Neurobiology and Genetics of Autism begun in
1997 by the National Institute of Child Health and
cluster An unusually large number of occurrences Human Development (NICHD), in collaboration
of a disease or condition in one place. In early 1999, with the National Institute on Deafness and Other
an autism cluster was reported in Brick Township, Communication Disorders (NIDCD). The CPEAs
New Jersey. The U.S. Centers for Disease Control were designed to conduct research into possible
and Prevention (CDC) and the Agency for Toxic causes of autism, including genetic, immunologi-
Substance and Disease Registry responded to local cal, and environmental factors. In 2002, the NICHD
calls for investigation after it was discovered that and NIDCD renewed funding for the CPEA Network
the town had about 40 cases among 6,000 children. through 2007
An average occurrence would be about 20.4 cases Each site is studying a unique aspect of autism,
per 6,000. In the suburban town of Granite Bay, but core information collected by CPEA sites in
California, about 30 miles east of Sacramento, 22 of their individual studies can be combined and used
the 2,930 children enrolled in grades K-6 are autis- to study broader research questions that no project
tic. One would expect a typical incidence of just could address alone. This shared data set may allow
10.2 cases in 3,000 children. scientists to find similarities and differences among
New Jersey parents attributed the cases of autism people with autism and their families that would
to the water and to a nearby landfill, but federal not be possible through a single study. In fact, as a
investigators never identified any pollutants. In result of the CPEAs, researchers have now assem-
Granite Bay, there seemed to be nothing that would bled a database on the genetics and outward char-
indicate a problem. Some Brick Township officials acteristics of the largest group of well-diagnosed
counter that the numbers may be skewed because persons with autism in the world.
some families with autistic children moved to Brick Currently, the CPEA Network sites in the United
for the school district’s highly regarded program, States include the following:
one of the first in the state. Boston University Studies of social-communi-
cative abilities in autism, language delays and prob-
lems in autism; and brain pathology underlying
cognitive ability A general term that refers social-communicative and language impairments
to the broad cluster of mental skills involved in in autism, using structural and functional magnetic
learning, thinking, and processing information. resonance imaging.
56 communication delay

University of California, Davis Imitation and autism; behavior problems, epilepsy, and puberty in
motor function in autism; measurement, predictors, adolescents with autism; and regression studies that
course, causes, and external validity of regression seek to define the phenomena, predict outcomes,
in autism; and a longitudinal study of the develop- and evaluate medical factors that may play a role,
mental course of autism. such as vaccines, seizures, and prenatal conditions.
University of California, Los Angeles How social This research is done in conjunction with the Uni-
communication, and language deficits in autism versity of Michigan, the University of Chicago, and
start and develop; follow-up and extension of cer- Harvard University.
tain treatments for autism; phenotype and genotype
in inversion and duplication of chromosome 15; and Affiliated Programs
neuroimaging and deficits in social communication Two sites that are not currently CPEAs are affiliated
in autism. with the Network.
University of Pittsburgh Organizing informa- University of California, Irvine Genes involved
tion into concepts in persons with high-functioning in autism; and brain structure and regression in
autism and Asperger’s syndrome; visual perception autism.
and visual processing in persons with high-func- University of Texas Health Science Center at
tioning autism and Asperger’s syndrome; sensory, Houston Development of communication and
motor, and executive problems in persons with social behavior and its relationship to brain func-
high-functioning autism and Asperger’s syndrome; tion in autism; abnormalities in brain structure
and functional brain imaging of language and cog- related to autism; and animal studies of brain struc-
nition in persons with high-functioning autism and ture, injury, and behavior.
Asperger’s syndrome. This research is done in con-
junction with Carnegie-Mellon University and the
communication delay Speech and language pat-
University of Illinois, Chicago.
terns that develop at a slower pace than would be
University of Rochester Medical Center Ani-
typically expected.
mal models and mechanisms of injury in autism;
behaviors that distinguish autism from other dis-
orders; and mutations in genes involved in early communication disorders A wide variety of
development and influences on gene function. This problems in using speech and understanding lan-
research is done in conjunction with the University guage, including use of written, spoken, or symbol
of Rochester Medical Center’s Departments of Pedi- system affecting the function, form, and/or content
atrics and Neurology, the Hospital for Sick Children of language. Autism is considered to be a commu-
(Toronto), Cornell Medical College, and the U.S. nication disorder. Other communication disorders
Environmental Protection Agency. related to the AUTISM SPECTRUM DISORDERS include
University of Utah Genetics and genetic sus- EXPRESSIVE LANGUAGE disorder, mixed receptive-
ceptibility of autism; brain development; and sero- expressive language disorder, phonological disor-
tonin function and immune system functioning in der, and dyspraxia.
autism. The communication problems of people with
University of Washington The relationships autism vary, depending upon the person’s intellec-
between the brain and behavior in autism; language tual and social development. Some may be unable
problems characteristic of autism; early diagnosis of to speak, and others may have rich vocabular-
autism and resulting outcomes; neuroimaging stud- ies and are able to talk about many topics in great
ies of autism; and the genetics of autism. depth. Most people with autism have little or no
Yale University Genetics of persons with autism; problem with pronunciation; instead, most have
the genetics of persons with autism and Asperger’s problems effectively using language or have prob-
syndrome, their families, and family members with lems with word and sentence meaning, intonation,
related disorders; changes to the nervous system in and rhythm.
communication disorders 57

Symptoms and Diagnostic Path stand what is read. Others have musical talents or
Those people with autism who can speak often say advanced ability to count and perform mathemati-
meaningless things. For example, an autistic individ- cal calculations. Approximately 10 percent show
ual may repeatedly count from one to ten or repeat “savant” skills or detailed abilities in specific areas
scripted dialogue from a favorite video or things such as calendar calculation, musical ability, or
previously heard (called ECHOLALIA). One form of math.
echolalia is called immediate echolalia, in which an
autistic individual repeats whatever is said to him Treatment Options and Outlook
instead of answering the question. In delayed echo- If a communication disorder is suspected, the child’s
lalia, an individual may say, “Do you want some- physician will usually refer the child to a variety of
thing to drink?” whenever he or she is asking for a specialists, including a speech-language patholo-
drink, or may repeat phrases out of context. gist, who performs a comprehensive evaluation of
Other communication problems involve using the child’s ability to communicate and then designs
stock phrases, such as, “My name is Susan” to begin a and administers treatment.
conversation even with close friends or family. Some There is not one general treatment method that
people simply repeat monologues or entire segments improves communication in all individuals with
of commercials or shows they have heard on TV. autism. The best treatment begins early, during
Some very bright autistic individuals may be the preschool years, and is individually tailored,
able to speak in depth about topics in which they targeting both behavior and communication and
are interested, such as stop signs or railroads, but involving parents or primary caregivers. The goal of
are unable to engage in an interactive conversation therapy is to improve useful communication.
on those topics. For some, working on verbal communication is
Many autistic individuals do not make eye con- a realistic goal; for others who are unable to reli-
tact, have poor attention spans, and do not use ably echo words or sounds said by others, func-
gestures either as a primary means of communica- tional communication is best obtained via gestures
tion (such as with AMERICAN SIGN LANGUAGE) or to or using pictures. Sometimes teaching these forms
assist verbal communication (such as pointing to an facilitates the development of spoken speech. Some
object they want). individuals with autism may remain dependent
Some autistic individuals speak in a high-pitched upon nonvocal forms of communication. Gestural
voice or use robot-like speech and are often unre- communication may include informal gestures,
sponsive to the speech of others. They may not such as pointing at desired things, shaking, or nod-
respond to their own names. As a result, some ding one’s hand. Alternatively, some individuals
autistic individuals are mistakenly diagnosed with learn more complex communication using Ameri-
a hearing problem. can Sign Language. Picture forms of communica-
The correct use of pronouns also may be a prob- tion may include pointing to symbols (such as a
lem for autistic individuals. For example, if asked, picture board) or a more complex system, such as
“Are you wearing blue jeans today?” the individual Picture Exchange Communication System (PECS).
may answer, “You are wearing blue jeans today,” The decision to use sign versus a pictural form of
instead of, “Yes, I’m wearing blue jeans.” communication with nonvocal individuals usually
Of course, not all autistic individuals have depends on whether their motor imitation skills
impaired communication. Many do develop pos- are stronger than their visual discrimination skills
sibly uneven speech and language skills to some (in which case teaching gestures may be easier) or
degree, although not to a normal ability level. the reverse (in which case PECS or a similar system
For example, vocabulary development in areas of may be more successful).
interest may be accelerated, and many individuals Treatment should include periodic in-depth
have good memories for recent information. Some evaluations provided by an individual with special
people with autism may be able to read words well training in the evaluation and treatment of speech
before the age of five but may not be able to under- and language disorders, such as a speech-language
58 communications notebook

pathologist. Psychologists and behavioral analysts • antisocial activity


also may work with the person to reduce unwanted • anxiety
behaviors that may interfere with the development
• conduct disorder
of communication skills.
No medications have been found to specifically • disorganization
help communication in autistic individuals. • hyperactivity
• learning problems
• obsessiveness
communications notebook A notebook sent with
a student (typically a special education student or • psychosomatic ailments
young student) to and from school by which par- • restlessness
ents and teachers maintain frequent, possibly daily,
communication. Typically, this notebook details In this version, the “Hyperactivity Index” had been
information about the student’s behavior or prog- renamed the Connors Global Index. It is included
ress during the day. on the forms for teachers and parents.

community care facility (CCF) A nonprofit constipation Difficulty or inability to have a


health facility that provides 24-hour nonmedical bowel movement. Many children with autism have
residential care to children and adults with DEVEL- chronic constipation and/or diarrhea. (Diarrhea
OPMENTAL DISABILITIES (such as autism) who are in may actually be due to constipation—that is, only
need of personal services, supervision, and/or assis- liquid is able to leak past a constipated stool mass in
tance essential for self-protection or to help with the intestine). Manual probing often fails to find an
the ACTIVITIES OF DAILY LIVING. impaction. An endoscopy may be the only way to
check for this problem. Consultation with a pediat-
ric gastroenterologist is required.
confidential file In relation to SPECIAL EDUCA-
TION,a confidential file is a limited access file main-
tained by the school that contains evaluations and controversies in autism Because autism is such
any other information related to special education a complex and poorly understood condition, there
placement. Parents have the right to know the are many controversies surrounding ideas about its
information contained in a confidential file and to cause and treatment.
have copies of any materials.
Autism as Disability
Well-adapted autistic people and autistic people
Connors Parent/Teacher Rating Scales–Revised who can function independently argue that rather
These two types of behavioral questionnaires are than considering autism a disability, it might better
checklists—one for parents, one for teachers—on be considered a different kind of personality. Critics
which they can rate a variety of behavior prob- argue that some severely autistic people cannot live
lems on a four-point scale. Several versions of this independently and need constant supervision dur-
scale are available; the 48-item parent scale and ing the course of their lives.
the 39-item teacher scale are both standardized.
Because many of the items on the hyperactiv- Controversial Causes of Autism
ity scale involve acting out and other annoying Most experts agree that there appears to be some
behaviors, this scale may not identify the child type of brain problem underlying autism, with a
who exhibits attention deficits and HYPERACTIVITY likely strong genetic component, and that there
but who is well socialized. Behavioral characteris- may be some type of interaction with environmen-
tics include tal factors. However, beyond that basic consensus,
corporal punishment 59

experts disagree about many of the more specific if untreated, may cause harm to the patient or oth-
causes of autism. Among some of the more contro- ers. Some people with autism engage in dangerous
versial theories of autism are behaviors (such as repeatedly striking their head
with enough force to cause injury). Some would
• vaccinations be able to function more freely in society if they
• food allergies are taught how to manage their own behavior, and
• mineral or vitamin deficiencies some people believe these benefits are worth the
use of aversives.
• immune system problems
Critics argue that aversive methods are never
• YEAST overgrowth helpful, and that if such methods are allowed,
• oral antibiotics aversives will be abused and that someone, some-
• prenatal exposure to mercury or other toxic where could overuse the methods. Critics also
substances insist that other methods achieve the goals as well
or better.
• pesticides and environmental toxins
• prenatal or birth trauma
corporal punishment Any intervention designed to
Generally, experts agree that some individuals or likely to cause physical pain with intention to stop
appear to have a genetic predisposition for autism or change behavior. In the United States, the most
and believe that there may be some type of interac- typical form of school corporal punishment is the
tion with environmental factors. striking of a student’s buttocks with a wooden paddle
by a school authority because the student disobeyed
Treatment Controversies a rule. More than half of all states ban the use of cor-
There are several well-developed and widely used poral punishment in schools because of its harmful
approaches to the treatment of autism, including physical, educational, psychological, and social effects
basic behavioral approaches and lots of one-on-one on students. In states where it is allowed, many
FLOOR TIME. Beyond that basic philosophy, there are school boards voluntarily prohibit it. Still, almost a
a host of specific treatments. Each of these methods half million children are being hit each year in public
have their own supporters and critics, and univer- schools, a disproportionate number being minority
sal agreement on the most effective treatments has children and children with disabilities.
not been reached. Some approaches that are con- The use of corporal punishment has been declin-
sidered to be more controversial by at least some ing in U.S. schools because of waning public accep-
experts include tance, increased litigation against school boards and
educators, and legal bans. Corporal punishment is
• SENSORY INTEGRATION therapy a technique that can easily be abused and lead to
• AUDITORY INTEGRATION TRAINING physical injuries.
• dietary interventions Most experts agree that corporal punishment
contributes to the cycle of child abuse and pro-
• mineral and vitamin supplements
violence attitudes of youth by teaching that it is
• visual treaments and IRLEN LENSES an acceptable way of controlling the behavior of
• FACILITATED COMMUNICATION others. While discipline is important, effective
alternatives are available to help students develop
Aversives to Manage Behavior self-discipline. Such alterntives include programs
While it is important to deal with atypical behaviors and strategies for changing student behavior, for
that can be dangerous, the risk of aversives is the changing school or classroom environments, and
fact that they can be misused. Generally, AVERSIVE for educating and supporting teachers and parents.
TECHNIQUES should be the treatment of last resort Alternatives for changing student behavior include,
used to address very severe behavior problems that, but are not limited to
60 cow’s milk allergy

• helping students achieve academic success by liam Sutherland and further developed by osteo-
identifying academic and behavioral problems path John E. Upledger in the 1970s.
and strengths
• behavioral contracting cross-categorical A system for grouping students
• positive reinforcement of appropriate behavior with disabilities. Cross-categorical grouping places
• individual and group counseling students with different kinds of disabilities into
the same instructional setting at the same time.
• disciplinary consequences that are meaningful
to students and have an instructional or reflec-
tion component Crossley, Rosemary Australian speech therapist
• social skills training and author who developed the method of FACILI-
TATED COMMUNICATION. Through intensive work
with institutionalized girls and women with severe
cow’s milk allergy See ALLERGY TO COW’S MILK. communication disorders, Crossley discovered a
way to support their communication using a combi-
nation of keyboards, letterboards, and physical sup-
port, usually at the hand, wrist, elbow, or shoulder.
craniosacral therapy An alternative treatment
The results were considered to be groundbreaking,
for children with AUTISTIC DISORDER that involves
as the girls and women learned to read and write
a gentle hands-on approach. Proponents claim
contrary to all expectations.
that the therapy helps improve central nervous
However, more recent studies of facilitated
system function, dissolve the effects of stress, and
communication have shown that the person help-
strengthen the immune system. ing the autistic individual actually inadvertently
During the hour-long treatment, the osteopathic directs the communication. The American Psycho-
physician places the hands on the patient’s neck, logical Association and the American Academy of
feet, jaws, and sacrum, identifying areas of restric- Pediatrics both issued a policy statement calling
tion, compression, or tension through the body, the method discredited and noting there is no sci-
which may in turn be impeding function of organs, entifically demonstrated support for the method.
muscles, nerves, blood vessels, and body tissues.
Treatment is generally soothing, comforting and
pleasant and creates a sense of ease, calmness, and cumulative file The general file containing all the
well-being. Babies can be treated while cradled in educational records and information maintained
the mother’s arms or while asleep. for any child enrolled in school. Parents have a
The treatment was developed at the beginning legal right to inspect the file and have copies of any
of the 20th century by osteopathic physician Wil- information contained in it.
D
daily life therapy A type of treatment for autism on-task behavior and minimize periods of wakeful-
combining physical education, art, music, and aca- ness at night. Through physical education, children
demics with development of communication and gain control of their bodies and consequently of
daily living skills to promote social independence, their behavior. Children learn to ride the unicycle,
imported from Japan in 1987. The therapy, which to roller-skate, and to master the balance disk and
is taught at the BOSTON HIGASHI SCHOOL, is an edu- various Higashi exercises. Through play and physi-
cational approach designed to foster independence cal education, children develop self-control and
for children who tend to be socially isolated; it is learn to cooperate and coordinate activities and
not a specific therapeutic treatment for children exercises with other children.
with autism but an educational methodology for all Instruction is another important part of daily life
children. therapy, focusing on a whole language approach to
“Seikatsu Ryouhou” was developed by the late language arts. The whole language approach is an
Dr. Kiyo Kitahara nearly 38 years ago, based on her educational philosophy that describes language learn-
experience teaching an autistic child in her regular ing as a natural outgrowth of a process integrating
kindergarten class. Recognizing that children with speaking, listening, reading, and writing. The whole
autism tend to be socially isolated, developmentally language approach emphasizes that reading is closely
delicate, and often anxious, sensitive, and fragile, linked to spoken language, so students are exposed to
Kitahara developed a unique educational approach language-rich classrooms to help make them better
to address these characteristics. Her educational readers and writers. Instruction is also given in math-
philosophy is characterized by respect and love, ematics and social sciences, with special attention to
offering a set of practices intended to dilute, rather a child’s own interests. Special subjects, including
than exaggerate, the autistic child’s sense of deficit art and music, can help develop creativity, enabling
and difference. This educational holistic approach is autistic children to express themselves through paint-
based on bonding between child and teacher and is ing, drawing, and musical performance. Elementary
not designed as a set of techniques to eliminate the children at Higashi learn to play the keyboard har-
behaviors of autistic children. monica and the violin. The alto recorder is taught
The primary focus of this therapy is to stabilize to middle school and high school students, some of
emotions by strengthening independent living and whom also participate in a jazz band. Children learn
self-esteem. Children learn to dress themselves, to age-appropriate songs, and are encouraged to vocal-
eat properly, and to use the bathroom indepen- ize sounds or words to the music.
dently. Through the mastery of self-care skills, chil- Aversive measures, punishment, medication,
dren develop self-confidence and are encouraged to or time-out procedures are never used to change
try other adaptive skills. behavior. Neither psychotropic medication or med-
Kitahara also believed that the key to social ication for behavior control is used. Instead, the
development was extensive physical exercise that method emphasizes concentration on the child’s
would release endorphins as natural inhibitors of strengths rather than the undesirable behavior.
anxiety and reduce aggression, self-stimulatory Kitahara was convinced that autistic children must
behavior, and hyperactivity, as well as increase be given age-appropriate activities and intellectual

61
62 DAN!

stimulation and that they can express feelings and musical gift, who specializes in jazz. The Randolph,
harbor academic potential similar to those of more Massachusetts, native was born prematurely (one
typical children. lb. ¾ oz.), and began playing the piano at age two,
Modeling and imitating peers helps each child when his mother bought him a $10 chord organ at
develop appropriate behaviors and encourages inter- a garage sale.
action between students. Clear directions for correct Within weeks, he was tapping out a few notes
posture and eye contact are emphasized, and verbal from “Twinkle, Twinkle, Little Star,” and by age
and physical prompts are given for alternate, incom- three, he played harmony to Lawrence Welk. At
patible behaviors. Consistency and follow-through five, the year he began piano lessons and was diag-
by all staff members clarifies expectations, sets limits, nosed as autistic, his mother began to use music to
and provides redirection. Verbal and nonverbal cues influence his behavior. When DeBlois answered a
are given in a concise, uniform way, creating a pre- question correctly, she would play his favorite song
dictable and secure environment for the students. (“Dueling Banjos”).
The curriculum emphasizes social relationships, As with all autistic savants, DeBlois has severe
and many opportunities to practice skills are pro- deficits in addition to his gifts, especially in motor
vided throughout the day and are integrated into a skills. He was taught how to play the violin because
predictable and structured routine. the motion would teach him how to brush his
Initial guidance focuses on reducing the child’s teeth and was given lessons on the drum because
exclusivity of food choices and improving sleeping the motion helped him learn to brush his hair. It
patterns—both of which are important in normal- was not until he was 26 that he learned how to
izing family life. manipulate the buttons on his pajamas and, a year
From early childhood, all students are given later, the small buttons on his tuxedo. He was slow
chores and responsibilities; careers and functional in verbal skills and at 16 was still unable to carry on
academics are emphasized for middle school and a conversation.
high school students in order to promote inde- He enrolled at the Perkins School for the Blind
pendence. Students at Boston Higashi participate in Massachusetts, but the only type of music he was
in a variety of vocational activities including cleri- able to study there was classical. In order to study
cal, custodial, and food service to enable them to jazz piano, he enrolled in jazz classes at the Riv-
develop good work habits and learn to work inde- ers School, a private preparatory school in Weston.
pendently. Employment education is practiced in When the prestigious Berklee College of Music in
both the school and community work settings and Boston asked Rivers to select one of its students
is always set in the actual work environment rather for a $1,000 scholarship to Berklee, Rivers chose
than the classroom. DeBlois. Impressed with the boy’s work during the
Daily life therapy stresses that education should summer session, Berklee invited him to return full
be conducted in an environment of normality. In time. DeBlois graduated magna cum laude from the
the Tokyo program, the format is a mixed educa- Berklee College of Music, in Boston, on Mother’s
tional setting with children of all types of ability; in Day, 1996.
the Boston program, some children are included in Even among savants, his skill is remarkable.
mainstream classrooms with typical age peers. The Most musical savants have an incredible ability
goal of Boston Higashi School is lifelong inclusion to duplicate what they hear. What distinguishes
in the community. DeBlois is his capacity to improvise, especially
in jazz. And while most musical savants are lim-
ited to a specific instrument (typically the piano),
DAN! See DEFEAT AUTISM NOW! DeBlois has learned many instruments and plays
them well.
Besides piano, DeBlois plays as many as 20
DeBlois, Tony (1975– ) A prodigious musical other musical instruments, 12 of them proficiently,
savant who is blind and autistic with a spectacular including organ, harmonica, guitar, harpsichord,
developmentally appropriate practice 63

English handbells, violin, banjo, drums, trum- Less common side effects include constipa-
pet, saxophone, clarinet, ukulele, mandolin, and tion, difficulty with or frequent urination, blurred
flute. Although his special emphasis is in jazz, he vision, changes in sex drive or ability, and excessive
also plays many other musical styles ranging from sweating. Rarely, severe side effects may include
country to classic. He can sing in German, French, jaw, neck, and back muscle spasms, slow or diffi-
Spanish, and Taiwanese, among other languages. cult speech, shuffling walk, persistent fine tremor
When not playing musical instruments, he or inability to sit still, fever, difficulty breathing or
enjoys swimming, exercise equipment, the com- swallowing, severe skin rash, yellowing of the skin
puter, and ballroom dancing. or eyes, or irregular heartbeat.
DeBlois was the subject of the 1997 CBS TV
movie Journey of the Heart, inspired by actual events
in his life. He has appeared on a variety of TV developmental disability A legal term used to
and radio shows exploring the SAVANT SYNDROME, describe an entire group of conditions that chal-
received a number of awards, including the Foun- lenge a person’s ability to learn and function inde-
dation for Exceptional Children’s “Yes, I Can” pendently. The term was coined in the 1970s for
Award, and has performed in concert in Singapore, the purpose of policy planning and federal funding,
Taiwan, and Ireland. and government programs addressing these disabil-
ities became the first agencies to use the term.
Although eventually the term “developmental
Defeat Autism Now! (DAN!) A treatment disability” often was used interchangeably with
approach for autism that features nutritional sup- “MENTAL RETARDATION,” the legal definition of
port, diet changes, and detoxification aimed at “developmental disability” includes AUTISTIC DISOR-
addressing core problems of autism rather than DER as well as cerebral palsy, epilepsy, and mental
symptoms. Some of the major interventions sug- retardation. A developmental disability must occur
gested by DAN! practitioners include before age 21 in order to meet the federal definition
and qualify a person for special education services,
• nutritional supplements, including certain vita- Supplemental Security Income, and Medicaid.
mins, minerals, amino acids, and essential fatty Many governmental and insurance regulations
acids note a difference between services for developmen-
• special diets totally free of gluten (from wheat, tal disabilities and those for mental illness.
barley, rye, and possibly oats) and free of dairy
(milk, ice cream, yogurt, and so on)
developmental expressive language disorder A
• testing for hidden food allergies, and avoidance
disorder in which a child has lower-than-normal
of allergenic foods
proficiency for his or her age in using language,
• treatment of intestinal bacterial/yeast overgrowth such as with vocabulary, the production of com-
• detoxification of heavy metals plex sentences, and recall of words.

desipramine (Norpramin, Pertofrane) A tricyclic developmentally appropriate practice (DAP) A


antidepressant used in some patients with autism set of guidelines ensuring that educational pro-
to treat hyperactivity, inattention, and impulsivity. grams are appropriate for each child’s age and
developmental stage. The guidelines were recom-
Side Effects mended by the National Association for the Edu-
Common side effects include upset stomach, drows- cation of Young Children (NAEYC) in the early
iness, weakness or tiredness, excitement or anxi- 1990s, requiring that early education programs be
ety, insomnia, nightmares, dry mouth, sensitivity child-centered and child-directed, with little effort
to sunlight, and appetite or weight changes. to explicitly teach specific skills.
64 Dexedrine

Developmentally appropriate practice has been nervousness, and rapid heart beat. The prescribing
debated by special educators who believe that early information for Adderall XR in the United States
intervention and direct skill instruction is essential was revised in August 2004 to add a warning about
to help children with learning disabilities address sudden death and heart risks. Before the update on
their learning needs. They argue that by refrain- Adderall XR’s prescribing information, the medica-
ing from direct teaching, the gap between delayed tion already carried the strongest Food and Drug
children’s abilities and their same-age peers grows Administration warning, highlighted in a black box,
larger rather than narrower. that amphetamines “have a high potential for abuse”
and “should be prescribed or dispensed sparingly.”
Separate warnings on the label caution against use
Dexedrine See DEXTROAMPHETAMINE. during pregnancy or while breast-feeding.

dextroamphetamine (Dexedrine) Stimulant med- Diagnostic and Statistical Manual of Mental Dis-
ication used to treat people with attention deficit orders–Fourth Edition, Text Revision (DSM-IV-
hyperactivity disorder (ADHD) and also sometimes TR) The basis for all psychiatric classification, this
used to treat individuals with autism, especially diagnostic manual is published by the American
those with hyperactivity and poor attention span. Psychiatric Association (APA) and used by most
These drugs work by increasing the person’s ability practicing clinicians and insurance companies in
to concentrate and pay attention and by reducing the United States. Organized by categories of dis-
impulsivity and hyperactivity. orders, the text also provides diagnostic criteria and
associated disorders for each listing. The first edi-
Side Effects tion was published in 1952; the fourth edition was
Side effects include palpitation, fast heart rate, high published in 1994, significantly updating and add-
blood pressure, overstimulation, restlessness, dizzi- ing listings from previous editions.
ness, insomnia, high or low mood, tremor, head- The APA continues to update the DSM about
ache, exacerbation of tics, TOURETTE SYNDROME, and every decade. The most recent update is the DSM-
psychotic episodes (rare at recommended doses). IV-TR; in this update, the most important material
Other symptoms include dry mouth, unpleasant remains the same as in the previous version. The
taste, diarrhea, constipation, and other gastroin- only things that have changed substantially are the
testinal disturbances. Appetite and weight loss may text accompanying the diagnoses and some parts of
also occur, as may impotence or changes in libido. the introduction and appendixes.
See also DEXTROAMPHETAMINE/AMPHETAMINE (AD- In order for a diagnosis to be made, the individ-
D ER ALL ). ual’s behavior must match the criteria listed for a
specific disorder in DSM-IV-TR. One criticism of the
DSM is that there are no separate categories or crite-
dextroamphetamine/amphetamine (Adderall) A ria for the diagnosis of children. While the behavior
stimulant medication that may be prescribed for chil- may be slightly different, which is typically noted,
dren with autism as a way of increasing focus and children are essentially diagnosed using the same
decreasing impulsivity and hyperactivity in high- criteria as are used with adults. In addition, because
functioning patients. Adderall XR is a long-acting a diagnosis from the DSM is typically required for
form of this stimulant that can be given just once health insurance coverage, some critics suggest that
a day, so that patients do not have to take a dose at individuals, particularly children, may be prema-
noon. Adderall XR usually lasts 10 to 12 hours. turely diagnosed with serious disorders.
The DSM-IV-TR can be used for many purposes:
Side Effects as a source of diagnostic information to enhance
Side effects are often dose related and include appetite clinical practice, research, and education; and to
loss, insomnia, abdominal pain, high blood pressure, communicate diagnostic information to others.
discrete trial training 65

Each revision of the DSM is the result of a sys- health care practitioner. Since gluten and casein are
tematic, comprehensive review of the psychiatric found in many common foods, following a gluten-
literature, and contains the most up-to-date infor- free, casein-free diet is not easy. Parents who are
mation available to assist the clinician in making a interested in providing this type of diet to their child
differential diagnosis. with autism should consult a gastroenterologist or
nutritionist to help design a healthy diet plan.
See also VITAMINS AND AUTISM.
diarrhea Many autistic children have chronic
diarrhea, which actually may be caused by chronic
CONSTIPATION as a result of only liquids that can differential diagnosis A systematic method of
leak past a constipated stool mass in the intestine. diagnosing a disorder that lacks unique symptoms
In this case of diarrhea related to constipation, or signs. There are a number of other conditions
manual probing often fails to find an impaction. An that may sometimes be confused with autism,
endoscopy may be the only way to check for this which is why a careful diagnostic workup must be
problem. Consultation with a pediatric gastroenter- performed. Conditions that cause symptoms similar
ologist is required. to autism include ASPERGER’S SYNDROME, CHILDHOOD
DISINTEGRATIVE DISORDER, RETT DISORDER, PERVASIVE
DEVELOPMENT DISORDER–NOT OTHERWISE SPECIFIED
dietary interventions Although most experts (PDD-NOS), childhood psychoses (such as schizo-
agree that autism is not caused by diet, individu- phrenia), FRAGILE X SYNDROME, hearing loss, and
als with autism may exhibit low tolerance of or metabolic disorders.
allergies to certain foods or chemicals. While not A number of tests can rule out some of these
a specific cause of autism, these food intolerances conditions. For example, blood tests can rule out
or allergies may contribute to behavioral problems. metabolic disorders that affect amino acids and
Some parents have reported significant changes lipids in the blood, and chromosomal analysis can
when specific substances are eliminated from the rule out some genetic disorders. A comprehensive
child’s diet. hearing test can rule out deafness as the cause of
Individuals with autism may have trouble digest- abnormal language development, while an electro-
ing certain proteins such as gluten or casein. Prelim- encephalogram (EEG) can rule out a seizure disor-
inary research in the United States and England has der. A magnetic resonance imaging (MRI) scan can
found higher levels of certain peptides in the urine rule out brain disorders.
of children with autism, suggesting their bodies are
not completely breaking down peptides from foods
that contain gluten (found in the seeds of various discrete trial training An instructional method,
cereal plants, such as wheat, oats, barley, and rye) often used as part of APPLIED BEHAVIOR ANALYSIS
and casein (the principal protein found in milk and (ABA) programs, that is based on principles of
dairy products). The incomplete breakdown and learning theory demonstrated to be an effective
the excessive absorption of peptides may disrupt intervention for autism.
brain function. Professionals and parents conclude The discrete trial training method is used to
that until scientists discover why these proteins are control the mass of information and interaction
not broken down, removing proteins from the diet that normally confronts a child with autism so
is the only way to prevent further brain and gastro- that it can be presented slowly. This control man-
intestinal damage. ages learning opportunities so that learning occurs
However, experts caution that it is important not in small steps and skills are more easily mastered
to withdraw gluten or casein food products from by the child. Skills are arranged from simple to
a child’s diet all at once, which could cause with- complex. In this method, every task given to the
drawal symptoms. Eliminating such foods from the child consists of a request to perform a specific
diet should therefore be done with the advice of a action, a response from the child, and a reaction
66 discrete trial training

from the therapist. The therapist does not just cor- pay attention, more complex skills such as social
rect behaviors, but also teaches skills from basics behavior and communication can be taught.
such as toileting and dressing to more involved Social skills training begins with eye contact,
activities such as social interaction. Discrete trial and moves toward imitation, observational learn-
training is usually used as part of an intensive ing, expressive affection, and social play. Commu-
behavioral therapy approach. nication skills usually start with receptive object
Simple skills must be mastered before new learn- labels and progress to expressive verbal language,
ing opportunities are presented, in which the child followed by spontaneous communication.
then builds upon the mastered skill toward a more However, discrete trial training is insufficient to
complex one. Learning opportunities are presented teach children to initiate behavior. Therefore, most
in a “training trial” format, and each training trial— behavioral programs also include “mand” training.
no matter what the skill being taught— consists of This involves teaching the child to make expressive
four major components: demands so that the child will learn that functional
language results in getting something the child
1. The teacher or therapist presents a brief, dis- wants. Mand is a word coined by B. F. Skinner in
tinctive instruction or question (stimulus). his book, Verbal Behavior, in which he discussed the
2. The instruction is followed by a prompt if the different functions of verbal behavior (including
child needs one, to elicit the correct response nonvocal communication such as sign and picture
and to make sure the child is successful. Ini- symbols). For example, he maintains that saying
tially, prompts may be complete hand-over- “juice” when one wants a drink of juice (mand) is
hand assistance, but, gradually, prompts are a very different behavior than saying “juice” after
slowly stopped until the child is able to be inde- a teacher points to a glass of juice and says: “What
pendently successful. is this?” It is yet another skill to say “juice” after a
3. The child responds either successfully in an teacher says: “What is something we drink?” Autis-
independent fashion or with the help of some tic children may learn to say “juice” in response to
level of prompting. In some cases of tasks that one situation but not others. Therefore, all func-
seem to have been mastered, the child may be tions may need to be specifically taught in the con-
allowed to respond incorrectly (response). text of natural environmental teaching and discrete
4. The teacher or therapist provides an appropri- trial teaching.
ate “consequence” using a process of differ- Generalization training then moves the drills
ential reinforcement: correct responses that into more natural environments. Children with
are performed independently earn the highest autism often do not spontaneously learn from their
level of reward, which may be an edible treat, environment and some may need to be taught vir-
a toy, hugs or praise, depending on the child’s tually everything they are expected to learn. There-
current level of learning. Partially prompted fore, as part of a broader applied behavior analysis
successful responses may earn less reinforce- intervention, discrete trials target numerous goals
ment. Incorrect responses are usually ignored and objectives.
or corrected. As a result, an effective ABA intervention requires
many hours of child/therapist sessions—at least 30
Discrete trial training begins with two main goals: (40 are better) hours a week, seven days a week,
teaching learning readiness skills, such as sitting in for at least two years. Young autistic children who
a chair and paying attention, and decreasing behav- received less intensive treatment made some modest
iors that interfere with learning, such as tantrums gains, but normal or near-normal functioning was
and aggression. In addition, the basic rules of social achieved reliably only when treatment was provided
interaction are established. Children are taught for 30 to 40 hours a week for at least two years.
how to learn from the environment through the However, discrete trial training represents only
introduction of clear stimulus-response-reward one of dozens of teaching strategies within the field
cycles. Once the child has learned to sit quietly and of ABA. For example, other methods of teaching
dolphin-assisted therapy 67

used within ABA-based programs include PECS and children with Down syndrome, and found that
(picture exchange communication system), photo the children learned four times faster when they
activity schedules, chaining, shaping, graduated were rewarded with being in the water with the
guidance, and functional communication training. dolphins. Essentially, this constitutes principles of
ABA: when the child performs a desired action, he
or she gets to interact with the dolphin.
Division TEACCH The primary goal of the TEACCH There are several different programs providing
program is to help people with autism to live or dolphin therapy, including the Full Circle Program
work more effectively at home, at school, and in at the Clearwater Marine Aquarium in Clearwater,
the community by reducing or removing autistic Florida, where, in addition to behavior modification
behaviors. (requesting the child to perform a task and then
A program began in 1966 at the University of giving a reward of dolphin time), the program also
North Carolina as a child research project to provide allows the children to participate in preparing the
services to children with autism and their families. dolphins’ food, feeding them, observing, interact-
Today, TEACCH the acronym for “Treatment and ing during training sessions, and giving rubs. With
Education of Autistic and related Communication- the new skills that the children learn in the pro-
handicapped Children,” provides a wide range of gram, the therapists claim that the children develop
services to a broad spectrum of toddlers, children, positive self-esteem and empowerment in all areas
adolescents, and their families, including diagnosis of their lives.
and assessment, individualized treatment programs, Another program offered by the Human Dolphin
special education, social skills and job training, Institute in Panama City Beach, Florida, focuses on
and parent training and counseling. TEACCH also child empowerment, in which children are intro-
maintains an active research program and provides duced to wild dolphins. This interaction is said to
training for professionals. empower children by enhancing their intellectual,
TEACCH uses many basic principles from the emotional, and physical well-being and improving
field of ABA, although it does not typically involve learning abilities and communication skills. Aside
the same level of data collection to monitor prog- from actual contact with the dolphins, this program
ress or try to achieve as intensive of an approach as also includes swimming and snorkeling lessons,
most ABA programs. proper etiquette during dolphin encounters, ocean
field trips, expressive arts (dance, music, breathing,
drawing), and helping the children use the newly
dolphin-assisted therapy (DAT) A controversial acquired skills and abilities.
therapeutic approach used to increase speech and
motor skills in children and adults who have been What Critics Say
diagnosed with developmental, physical, and/or Critics of DAT argue that dolphin therapy does not
emotional disabilities, such as AUTISTIC DISORDER. help the child with special needs any more than
Those who support this theory believe that when would interaction with any other service animals,
a child with autism interacts with a dolphin, the such as dogs and horses. Such critics say that time
interaction increases the child’s attention span. spent with any kind and gentle animal can break
Dolphin therapy began in 1978 following through the child’s barrier and provide successful
research by David Nathanson, Ph.D., a PSYCHOLO- results.
GIST specializing in therapy for children with special Some proponents of DAT counter that when a
needs. Nathanson explained that the key to learn- dolphin interacts with a human, it triggers a greater
ing is to increase sensory attention so that increased harmony between the left and right sides of the
learning will occur. Children with autism have human brain, which they believe is caused by the
trouble paying attention, so therefore they have dolphin’s sonar (the ability to transmit sound waves
difficulty learning. Nathanson developed a series to locate objects in front of them). Further, the med-
of carefully controlled experiments using dolphins ical director of Convimar at Mexico City’s Aragon
68 Down syndrome

Aquarium claims that dolphins seem to be able to these milestones show only about a one-month
sense problem areas in the brains of children using delay. However, some studies do suggest that smil-
their sonar. They somehow see the damage and emit ing and laughing may be slightly less intense than
the appropriate frequency to help heal them. Mexi- for healthy babies.
can experts at the aquarium claim that 90 percent of Babies with Down syndrome begin to enjoy
clients show significant improvement. patty-cake and peekaboo games at about 11 months,
However, critics counter that it is unlikely that which is about three months later than for healthy
dolphins could target any particular area of a per- babies. Studies in the second year of life show the
son’s brain with sonar. Any success with the dol- babies to be skilled in social communication—warm,
phin experiments could be more likely caused by cuddly, and normally responsive to physical contact,
the opportunity to interact with dolphins, which unlike babies with autism. This normal emotional
they say could probably be replicated by giving the responsiveness continues into adult life, and as stud-
patients a puppy. ies of teenagers have shown, it develops into proper
Most programs are five to six days long, and the empathy, making the person with Down syndrome
cost can range anywhere from $2,000 to $6,000. a sensitive and socially aware person.
Although dolphin-assisted therapy may help those A child with Down syndrome suspected of hav-
children who respond positively to animals, it is ing a complicating behavior disorder such as autism
not a miracle cure and parents should be cautious will not show these normal behaviors in the social
about any organization that claims otherwise. and emotional areas. Some of the primary behavior
Most experts believe there is no scientific evi- that may suggest the possibility of autism in a child
dence at all that using dolphins is helpful. with Down syndrome include

• extreme isolation: The child does not relate to


Down syndrome As many as 10 percent of chil- people normally and prefers to be left alone,
dren diagnosed with Down syndrome also have refusing to join in group play with other chil-
autism. Although experts believe that autism only dren. Unlike children with Down syndrome,
rarely occurs in children with Down syndrome, it who are very lovable and huggable, the autistic
may be more common in those persons with Down child does not want to be held.
syndrome who also show superimposed behavioral
• anxious obsessive desire for the preservation of
problems.
sameness: Any differences in daily routines can
However, many dual diagnoses may go undi-
cause a breakdown.
agnosed, since many doctors are unaware that the
two conditions may coexist. Autism is a much more • lack of eye contact: Autistic persons may not
complicated condition to diagnose than is Down often make eye contact but will look away or
syndrome; there are no blood tests, genetic markers, stare through others.
facial features, or other characteristics that apply to • stereotypical movement: repetitive movements,
all autistic persons. Instead, the diagnosis is subjec- such as flapping hands or waving a toy back and
tive, based on observations of certain behaviors. At forth
the same time, diagnosis and treatment of autism
is much more critical than for Down syndrome, Because some of the above characteristics (espe-
because without early detection and intervention, cially stereotyped behaviors) are normal for a child
the autistic person’s life may be much more limited with Down syndrome, the diagnosis of autism is
than would that of a person with Down syndrome. more difficult in these children. There are a num-
Most infants with Down syndrome have fewer ber of reasons why cases of autism in children with
problems with social and emotional development, Down syndrome are not reported.
smiling when talked to at two months of age, smil- One problem is that autism must be diagnosed
ing spontaneously at three months, and recogniz- before age three. One reason is that parents of a
ing parents at three and a half months; each of young child with Down syndrome tend to be con-
dyspraxia 69

cerned with its possible medical complications; Symptoms and Diagnostic Path
developmental delays are expected, so it does not This disorder, present at birth, is characterized by
occur to parents or professionals to consider autism. a limited ability to move the eye inward toward
Only when the child becomes older may it become the nose, outward toward the ear, or in both direc-
clear that autism is also present. tions. In addition, when the affected eye moves
inward toward the nose, the eyeball retracts and
the eye opening narrows. In some cases, when the
Duane syndrome A rare disorder that causes eye attempts to look inward, it moves upward or
unusual eye movement problems and that some- downward.
times occurs in people with autism. The gene that
is involved with Duane Syndrome (HOXD1 gene) Treatment Options and Outlook
also has been linked to autism. Surgery should not be performed unless there is
Although the condition was originally thought to a cosmetic problem when looking straight ahead.
be due to fibrosis of one of the eye muscles, today A simpler solution is to wear special glasses with
experts have realized that it is caused by lack of prisms to eliminate the head turn.
development of the control center of the sixth nerve
in the brain. Interestingly, most of these patients do
not have double vision when looking to the side. dyspraxia See APRAXIA.
E
early childhood assessment Testing that identi- a collaborative effort from parents and medical,
fies early developmental and learning problems in social services, and educational professionals. The
preschool and primary grade children. Early child- pre-academic skills that may need help include self
hood assessment practices allow for accurate and concept, fine and gross motor skills, awareness of
fair identification of the developmental needs of sounds, visual discrimination, communication and
infants, preschoolers, and young children. language development, thinking skills, and social
Sound early childhood assessment should involve skills. Nationally recognized early intervention
a multidisciplinary team, including school psycholo- programs include Project Head Start and Reading
gists with specialized training in the assessment of Recovery.
the young child who view behavior and develop- See also INDIVIDUALIZED FAMILY SERVICE PROGRAM.
ment from a longitudinal perspective.
Early assessment of potential problems is essen-
tial because of a child’s broad and rapid develop- echolalia Mechanical repetition of words or
ment. Intervention services for any psychological phrases, sometimes hours after the words are heard.
and developmental problems are essential and Echolalia is one of the classic signs of autism, in
cost-effective. which the person will repeat a word with the same
Standardized assessment procedures should be intonation as the person who said it originally, yet
used with great caution in educational decision-mak- will not seem to understand what he is repeating.
ing because such tools are inherently less accurate Sometimes the repetition will feature just an echoed
when used with young children. Multidisciplinary word; other autistics will mimic whole sentences or
team assessments must include multiple sources of even conversations, even using convincing accents
information, multiple approaches to assessment, and and the voices of other people.
multiple settings in order to yield a comprehensive Immediate echolalia is a type of repetition in
understanding of children’s skills and needs. There- which an autistic individual repeats whatever is
fore, assessments should center on the child in the said to him instead of answering the question. In
family system and home environment, both sub- delayed echolalia, an individual may reply, “Do you
stantial influences on the development of young want something to drink?” any time he or she is
children. asking for a drink. Alternatively, delayed echolalia
may occur as scripted repetition of dialogue from a
video or conversation that is totally out of context.
early intervention program A program designed
to identify and provide intervention for infants and
young children who are developmentally delayed educational consultant A term used to describe a
and at high risk for school failure. The purpose of range of individuals with varying backgrounds and
this type of program is to help prevent problems as areas of expertise regarding education. For exam-
the child matures. ple, some educational consultants may specialize in
These programs address the needs of young chil- college placement, while others may provide test-
dren from birth to the beginning of school, with ing and specialize in primary or secondary school

70
eligibility 71

placement or consultation. An educational consul- setting may be more appropriate, provided that
tant may or may not have a background in learning there is enough support (a part- or full-time aide,
disabilities or autism. Consultants who specialize or other accommodations as needed).
in special education should have a background in Parents of an autistic child should consult with
assessment. their child’s teacher and school specialists on an
An educational consultant may provide coun- INDIVIDUAL EDUCATION PROGRAM (IEP), which out-
seling to help student and family choose a school, lines in great detail the child’s educational program.
college, or other program that will foster academic Additionally, meeting with the child’s classmates
and social growth. Educational consultants can and/or their parents can be helpful in encouraging
provide a student and family with individual atten- other students to interact positively with the autis-
tion, firsthand knowledge of hundreds of educa- tic child. In some states, home therapy programs
tional opportunities, and the time to explore all of (such as APPLIED BEHAVIOR ANALYSIS and SPEECH
the options. Consultants may specialize in college THERAPY) may be funded by the school district,
admission, boarding school, summer programs, rather than through the state. However, it may
troubled teens, international students or learning take considerable effort to convince the school dis-
disabilities. trict to provide those services. In other states there
is no option other than private pay to fund a home
therapy program.
educational evaluation An educational evalua-
tion is typically part of the process of defining an
INDIVIDUALIZED EDUCATION PROGRAM (IEP). Educa- electroencephalogram (EEG) A graphic record of
tional evaluation may involve administration of the electrical activity at the surface of the brain. An
standardized academic tests, assessment of perfor- EEG can be used to differentiate autism from other
mance in different academic areas, and observation disorders with similar symptoms. An EEG reading is
of classroom performance. To be effective, evalua- obtained by attaching small electrodes to the scalp,
tion should encompass a number of different types which allows the regular electrical potential of the
of measures and involve the entire range of aca- brain to be amplified and recorded in graphic form
demic skill areas. by an electroencephalograph.
See also INDEPENDENT EDUCATION EVALUATION. Characteristic changes in type and frequency of
the waves during both awake and asleep states can
provide different information about the brain and
Education for All Handicapped Children Act of how it is functioning.
1975 (PL 94-142) This significant legislation,
renamed the INDIVIDUALS WITH DISABILITIES EDUCA-
TION ACT in 1990, requires the provision of a free eligibility The criteria for whether a student with
and appropriate public education to children with autism is eligible for special education services or
disabilities such as autism. not is determined by the INDIVIDUALIZED EDUCATION
PROGRAM team. The team should consider qualita-
tive and quantitative information from the assess-
education for autistic children Early interven- ment process.
tion programs are available for children younger Many states continue to determine eligibility as
than age three; for children over age three, there learning disabled by a discrepancy formula, which
are preschool and school programs available. Par- is a mathematical equation that shows a signifi-
ents should contact their local school district for cant discrepancy between a student’s achievement
information on their local programs. (achievement test scores) and potential (IQ score).
In some cases, a separate program for special However, recent studies discourage the prac-
needs children may be best, but for higher-func- tice of determining eligibility solely on discrepancy
tioning children, integration into a regular school of test scores, and encourage the consideration of
72 emotional and behavioral disorder

other significant factors such as observations and • intensity: how severe the problems are in affect-
the experiences of teachers and parents. ing school achievement, social skills, or interper-
See also INTELLIGENCE QUOTIENT. sonal relationships within the school setting
• pervasiveness: the number of settings in which diffi-
culties occur in the school, family, or community
emotional and behavioral disorder (EBD) A
• persistence: the extent to which difficulties have
condition in which behavioral or emotional
continued despite the use of well-planned,
responses of a child interfere with performance in
empirically-based, and individualized interven-
self care, social relationships, personal adjustment,
tion strategies provided within lesser restrictive
academic progress, classroom behavior, or work
environments
adjustment. Early identification and intervention
for students with emotional and/or behavioral • developmental/cultural data: the extent to which
problems is essential and requires specialized edu- the student’s behavior is different from the
cational programming. behavior expected for children of the same age,
EBD is more than a transient, expected response culture, and ethnic background. Information
to stress in the child’s environment; the problem should be obtained from a variety of sources
persists even with individualized interventions, that can provide data about the child’s difficul-
such as feedback, consultation with parents, and ties across various settings.
modification of the educational environment.
The assessment should include information
Symptoms and Diagnostic Path about a child’s behavioral and emotional func-
EBD must be exhibited in at least two different set- tioning, developmental history, areas of signifi-
tings, at least one of which is school-related. It can cant impairment in school, adaptive behavior and
coexist with other handicapping conditions, such achievement, impairment outside the school setting
as schizophrenia, affective disorders, anxiety disor- in areas such as vocational skills, and social skills or
ders, or other disturbances. It is important that the interpersonal relationships. Because biological and
assessment identify both the strengths and needs neurological factors may contribute to, cause, or
of the individual and those with whom the student trigger problem behaviors, consultation with medi-
interacts. The assessment should ensure that the cal care providers and consideration of relevant stu-
child’s difficulties are not primarily due to tran- dent and family medical history is important.
sient developmental or environmental variables, Formal methods for gathering information may
cultural or linguistic differences, or influences of include behavior checklists, standardized self-reports,
other handicapping conditions. Referral for special structured interviews, rating scales, and other appro-
priate assessment techniques. Informal methods,
services should not be used as a disciplinary action
such as behavior observation and analysis of work
or an effort to resolve conflicts.
samples, can also be useful.
The results of the assessment should provide
information about: Treatment Options and Outlook
Eligibility for services under the category of emo-
• environmental factors: the relationship between
tional/behavioral disorders should not automatically
the instructional, social, and community envi-
imply placement in a categorical special education
ronment and the student’s specific problems
program. Since emotional and behavioral disorders
• strengths: the resources of the student, family, have many influences, interventions for children
teacher(s), and school setting with these disorders must be comprehensive. Inter-
• history: duration of the difficulties, their rela- ventions should be planned by a team that includes
tionship to specific developmental or situational the parent, the child, the school psychologist and
stressors, and previous attempts to resolve the other teachers, administrators, and community ser-
difficulties vice providers. Intervention plans should take into
emotional disturbance 73

account the strengths of the child, the family, the be effectively addressed through consultation with
child’s teachers, and the school. teachers and parents, short-term counseling, and
Most schools exist primarily as an educational interventions in the regular classroom setting.
setting rather than a treatment setting, so children Job and transitional planning Career explora-
with significant emotional or behavioral disorders tion, pre-vocational and vocational skills develop-
may need treatment outside school. ment, and transition to the after-high-school world
Individualized academic and curricular inter- should be included for all adolescents with emo-
ventions Children with emotional or behavioral tional and behavioral disorders.
problems frequently achieve below grade expecta-
tions in academic areas. Academic problems often
seem less important than a student’s behavioral emotional/behavioral tests Psychological tests
difficulties. Students may benefit from adaptations that measure how parents, teachers, and the child
to the curriculum, alteration of the pace of deliv- rate the child’s behavior, attitudes, and feelings at
ery, improvements to the instructional and orga- home and at school. They include
nizational ecology, and instruction in learning and
study skills. • Behavior Assessment System for Children
Consultation with teachers Teachers may ben- • Conner’s Behavior Rating Scales
efit from a discussion of the needs of the student
and the most effective strategies to help the child • ACHENBACH CHILDHOOD BEHAVIOR CHECKLIST
improve behavior. Teachers will also benefit from • Reynolds Child Depression Scale
the psychosocial support component of consulta- • Piers Harris Self-Concept Scales
tion in dealing with the frustration and isolation • Differential Test of Conduct and Emotional
that often is present when working with children
Problems
with significant problems.
Consultation and partnership with parents Par- • Assessment of Interpersonal Relationships
ents will benefit from consultation directed at • Depression and Anxiety in Youth Scale
understanding their child’s difficulties, developing • Multidimensional Depression Inventory
and implementing effective behavior management
strategies, and working collaboratively with other
caregivers. The parent may also need assistance emotional disturbance Emotional, behavioral, or
with negotiating the array of services available in mental disorders that can interfere with a child’s abil-
the community. ity to learn. Emotional disturbance is defined under
Individual and group counseling Counseling the INDIVIDUALS WITH DISABILITIES EDUCATION ACT.
may help the student more readily improve social Experts are not sure what causes emotional
skills and school adjustment. Students often need help disturbance, but various factors such as heredity,
in dealing with the stress in their environment and brain disorder, diet, stress, and family functioning
understanding responsibility and self-directedness. have been suggested as possible causes. More than
Social skills training Students with emotional 463,172 children and youth with serious emotional
and behavioral disorders often have problems with disturbances were provided services in the public
social skills, so social skills training in the child’s schools in 1998.
multiple environments is often helpful.
Crisis planning and management Crises should Symptoms and Diagnostic Path
be anticipated and plans for dealing with crises Many children who do not have emotional distur-
should be a part of the student’s intervention plan. bances may act out occasionally, but when children
Specialized educational settings By law, children have serious emotional disturbances these behav-
must be provided services in the least restrictive envi- iors continue over long periods of time. Some of the
ronment that meets the student’s academic, psycho- characteristics and behaviors seen in children who
logical, and social needs. Many students’ needs can have emotional disturbances include
74 epilepsy

• short attention span, impulsiveness bance” may have IEPs that include psychological
• acting out, fighting or counseling services as a related service. This is
an important service and must be provided by a
• withdrawal, excessive fear or anxiety
qualified social worker, psychologist, or guidance
• immaturity (inappropriate crying, temper tan- counselor.
trums, poor coping skills)
• learning difficulties (academically performing
below grade level) epilepsy A neurological disorder that can lead to
convulsions, partial and full loss of consciousness,
Children with the most serious emotional distur- and “absences” (temporary daydream-like inatten-
bances may experience distorted thinking, exces- tion). It occurs more frequently in autistic people
sive anxiety, bizarre behavior, or abnormal mood and their families than in the general population;
swings. in fact, one-third of the population of people with
Emotional disturbance is a condition exhibiting autism have developed seizures in early adult life.
one or more of the following characteristics over a
long period of time and to a severe degree:
Epsom salts baths A mineral product (hydrated
• an inability to learn that cannot be explained by magnesium sulfate) normally dissolved in bath-
intellectual, sensory, or health factors water to ease achy muscles and smooth rough skin.
• an inability to build or maintain satisfactory rela- Epsom salts are named for the mineral waters of
tionships with other children and teachers Epsom, England, where they have been used since
the 1600s. Epsom salts can be used as an alternative
• inappropriate types of behavior or feelings under source of magnesium and sulfate, since both can be
normal circumstances absorbed through the skin.
• a general unhappiness or depression Some experts believe that children with autism
• a tendency to develop physical symptoms or fears can benefit from daily Epsom salts baths. The theory
associated with personal or school problems is that many children with autism lack sulfur in their
• The term includes schizophrenia. The term does blood and do not absorb sulfur-based substances
not apply to children who are socially malad- well. Some experts believe a lack of sulphur may
justed, unless it is determined that they also cause many of the autistic symptoms, and believe
have an emotional disturbance that Epsom salts baths are one way to replenish this
loss. Epsom salts help sulphation—the process in
The federal government is currently reviewing which enzymes help the body detoxify itself.
the way in which serious emotional disturbance is Other experts who do not necessarily support
defined. the theory do acknowledge that the baths will not
hurt the child. (CAUTION: No one should take an
Education Epsom salts bath if he or she has high blood pres-
Educational programs for students with a serious sure or a heart or kidney condition.)
emotional disturbance need to include attention Low sulfur levels could cause many problems.
to mastering academics, developing social skills, For example, sulphate is important for detoxifi-
and increasing self-awareness, self-esteem, and cation of metals and other toxins, and since boys
self-control. Career education (both academic and excrete more sulfur than girls, they may be more
vocational programs) is also a major part of second- susceptible to sulfation problems. Some research-
ary education and should be a part of every ado- ers also found that the ileum of the intestine lacks
lescent’s transition plan as outlined in his or her sulfur, which would lead to a leaky gut. Sulphate
INDIVIDUALIZED EDUCATION PROGRAM (IEP). also is needed to release pancreatic digestive
Students eligible for special education services enzymes; many enzyme levels theoretically would
under the category of “serious emotional distur- be impaired if sulfur levels were low.
estate planning 75

In addition to Epsom salts baths, some doctors Some government benefits are not affected by
recommend magnesium sulfate cream. the child’s financial resources. For example, Social
The daily Epsom salts bath typically contains Security Disability Insurance (SSDI) beneficia-
one and one-half to two cups of Epsom salts, which ries receive their benefits whether they need the
is first dissolved in very hot water; the tub is then money or not. Regardless of what the parents leave
filled with very warm water. The individual should to a son or daughter with a disability, the Social
soak for about 30 minutes or longer; hair can be Security payments will still be paid once the person
washed in this water. Children should not drink has qualified.
the bathwater. Children should not rinse off before Some government benefits (such as Supplemen-
getting out of the bathtub; they should just dry off tal Security Income and Medicaid) carry financial
and go to bed. eligibility requirements. If a person with autism has
too many assets or too much income, no benefits
will be paid. Those who are eligible because of low
estate planning Making special long-range finan- income can become ineligible when they inherit
cial plans is imperative for parents of an autistic money, property, or other assets. Therefore, a child
child, who must plan for the social, medical, and who receives government benefits with financial
financial needs of their autistic offspring. If the eligibility requirements needs to have parents who
child’s autism is severe enough to affect mental arrange their estate to minimize loss of benefits.
capability, there is an even greater need to create Finally, some government programs available
a special estate plan. Because autism often impairs to individuals with autism charge according to
a person’s ability to manage financial affairs while what the person can afford to pay. Many states will
simultaneously increasing financial need, parents charge the autistic individual for program benefits
must be sure that assets are available after their if income is high enough.
deaths to help the child while also making sure Some parents choose to disinherit a child with
that the assets are protected from an inability to autism if assets are relatively modest and the child’s
manage them. needs high, which would then force the child to
First, parents should realistically assess the child’s rely on federal and state supports after the parents’
disability and the prognosis for future development. death. This is especially helpful if parents wish to
A professional evaluation of the child’s prospects help their other children.
and capability of earning a living and managing Alternatively, parents can leave a child with
financial assets is a good idea. It is always possible autism an outright gift, which is the best idea if the
to change an estate plan as more information about child with autism is not going to be receiving gov-
the child becomes available. ernment benefits. If mentally competent, the child
Next, parents should estimate the size of their can hire help with managing the gift, but if the child
estate and the prospective living arrangements of the has a cognitive disability, an outright gift is never a
child with autism. These living arrangements will good idea, because this person may not be able to
have a tremendous impact on how the estate should handle the financial responsibilities.
be distributed. If parents believe a guardian or con- A trust is preferable if parents want to leave a gift
servator is necessary, they need to recommend a to support a child. Alternatively, some parents leave
potential guardian or conservator in the will. a morally obligated gift to another child. The dan-
The parents should analyze the earning potential ger of morally obligated gifts is, of course, that the
of the child and consider what government benefits morally obligated recipient may ignore the wishes
the child is eligible to receive. Support for a person of the parents. Morally obligated gifts can be useful
with autism usually comes from state and federal when the parents have a modest amount of money
benefits via actual grants (such as Social Security and do not expect a lifetime of care for their child
or SUPPLEMENTAL SECURITY INCOME) or support pro- with autism, but instead want their healthy chil-
grams such as subsidized housing or a sheltered dren to use some of the inherited money to help
workshop job. their sibling with special needs.
76 evaluation

Special Needs Trust The person with the disability does not have a trust
The only reliable method of making sure that the but is nominated as a beneficiary of the trust and is
inheritance actually has a chance of reaching a usually the only one who receives the benefits. The
person with a disability when he or she needs it is trustee (the manager) is given the absolute discre-
through the legal device known as a Special Needs tion to determine when and how much the person
Trust (SNT). The SNT can manage resources while should receive.
maintaining the individual’s eligibility for public assis-
tance benefits. The family leaves whatever resources
it deems appropriate to the trust, which is managed evaluation Collecting and analyzing information
by a trustee on behalf of the person with the disabil- about a child and administering tests for the purpose
ity. While government agencies recognize SNTs, they of diagnosis or treatment. In educational settings, an
have imposed some very stringent rules and regula- evaluation is a required part of a plan for special-
tions upon them, which is why any family thinking education services, usually called an INDIVIDUALIZED
about an SNT should consult an experienced attor- EDUCATION PROGRAM (IEP). For the evaluation of
ney—not just one who does general estate planning, DEVELOPMENTAL DISABILITIES or learning disabilities,
but one who is very knowledgeable about SNTs and multiple assessments are required, including intel-
current government benefit programs. ligence and achievement tests.
Special needs trusts are imperative for a child A parent can ask the school to test a child, or
with autism. The provisions can be broad or limit- school staff may ask parents for permission to do
ing. For many parents, a trust is the most effective an evaluation. If staff members think a child may
way to help the child, by keeping assets so that they have a disability and may need special education
will be available to the child but will not disqualify and related services, they must evaluate the child
him or her for government benefits. before providing these services. This evaluation is
The actual cash benefits of government assistance free to the family.
are generally quite small and force the individual The group involved in a child’s evaluation will
to live below the poverty level. This means that if include
the autistic child is to have any type of meaningful
lifestyle, the family or local charities have to pro- • at least one of the child’s regular-education
vide supplemental assistance. With recent changes teachers
in the Social Security Administration, the primary • at least one of the child’s special-education teach-
government benefit programs are recognizing that ers or service providers
family contributions to the person’s well-being can
• parents
only improve his or her overall quality of life. As
long as the family’s contributions are supplemen- • a school administrator expert in special-educa-
tary, as opposed to duplicating government benefit tion policies, children with disabilities, the gen-
programs, they are permitted. Thus, the current eral curriculum, and available resources
government benefit programs do permit the fam- • an expert who can interpret the evaluation
ily to provide some supplementary income and results and talk about what instruction may be
resources to the person with a disability. However, necessary
the government regulations are very strict, and • individuals (invited by parents or the school) with
they are carefully monitored. knowledge or special expertise about the child
One wrong word or phrase can make the dif-
• the child, if appropriate
ference between an inheritance that really benefits
the person with a disability and one that causes • representatives from other agencies responsible
the person to lose access to a wide range of needed for paying for or providing transition services
services and assistance. The Special Needs Trust • other qualified professionals such as a school psy-
does not belong to the person with a disability—it chologist, occupational therapist, speech language
is established and administered by someone else. therapist, physical therapist, medical specialists
eye contact 77

Members of the group will begin by checking the • hearing impairment


child’s school file and recent test scores and con- • mental retardation
ducting interviews with parents and teachers.
• multiple disabilities
Before staffers can go any further, they must ask
the parents for permission and describe what tests • orthopedic impairment
will be used and any other ways the school will col- • other health impairment (such as having lim-
lect information about the child. ited strength, vitality, or alertness) that affects a
Although tests are an important part of an eval- child’s educational performance
uation, they are only a part. The evaluation should • serious emotional disturbance
also include the observations of professionals who
• specific learning disability
have worked with the child, the child’s relevant
medical history, and the parents’ ideas about the • speech or language impairment
child’s experiences, abilities, needs, and behavior. • traumatic brain injury
It is important that the school evaluate a child in • visual impairment, including blindness
all areas of possible disability. For example, the tests
should evaluate Parents have the right to receive a copy of the eval-
uation report and to receive a copy of the paper-
• language skills (speaking and understanding) work concerning the child’s eligibility for special
• thoughts and behavior education.
• adaptability to change If the child is eligible for special-education and
related services (such as speech-language therapy),
• school achievement
parents meet with the school to discuss special edu-
• intelligence cational needs and to create an IEP for the child. The
• movement, thinking, learning, seeing, and hear- IEP is a written document that parents and school
ing function personnel develop together to describe a child’s
• job-related and other post-school interests and educational program, including special services.
abilities If a child is not eligible for special-education and
related services, the school must inform parents
Tests must be given in the child’s native language in writing and must provide information about an
or by other means of communication (for example, appeal if the parents disagree with this decision.
sign language if the child is deaf). Tests must not be Parents have the right to disagree with the eligibil-
biased, and the tests must be given correctly. Evalu- ity decision.
ation results will be used to determine if the child
has a disability and whether the child is eligible for
special education and related services. This decision expressive language Language used to communi-
will also be based on local policies about eligibility cate meaningful information via vocal, gestural, or
for these special services. symbolic means. Expressive language requires the
Under the INDIVIDUALS WITH DISABILITIES EDUCA- child to describe things in a unique way, not just
TION ACT (IDEA), parents have the right to be part
repeat what others before had said. Researchers
of any group that decides a child’s eligibility for have found that the average child with an AUTISTIC
DISORDER today has an IQ of about 50 and that at
special-education and related services. The IDEA
lists 13 different disability categories under which a least 40 percent of them do not develop any expres-
child may be eligible for services: sive language.

• autism
eye contact A form of nonverbal communica-
• deaf-blindness tion often absent in people with AUTISTIC DISOR-
• deafness DER. Being able to make eye contact is one of the
78 eye-hand coordination

primary foundations for the development of social the brains of people with autism that explain this
skills. Although poor eye contact is probably the difficulty.
most common symptom reported by parents of Increased eye contact is one of the goals of treat-
young children with autism and is often the first ment for autism, and is part of social skills training.
and most obvious symptom, not all children with
autism have poor eye contact.
Many countries have strong cultural assump-
eye-hand coordination A combination of visual
skills and fine motor skills of the hand. Eye-hand
tions about eye contact. In the United States, failure
coordination is required for many daily activities,
to make eye contact is often interpreted as signaling
such as handwriting, drawing, and typing on a key-
dishonesty, discomfort, impoliteness, inattention, or
board, dressing (such as buttoning, zipping, and
having something to hide. Direct eye contact is con-
tying shoes), and for many sports, such as throwing
sidered to reflect openness, honesty, and politeness.
and catching in basketball and baseball. The term
Even in the first few months of life, many infants
dysgraphia is used when individuals have poor
diagnosed with autism avoid eye contact. Typically,
eye-hand coordination, resulting in poor control of
instead of making eye contact with others, the per-
handwriting.
son with autism will look away or appear to look
right through other people.
Some evidence suggests that individuals with eye-hand-foot coordination The ability to control
autism use different neural circuitry to process and direct movements of feet (and legs) in accor-
faces. What appears to be a simple perceptual task dance with visual stimuli. Examples of eye-hand-
is difficult for individuals with autism. Research is foot coordinated activities are operating a kick or
under way to try to understand the differences in foot-drive potter’s wheel and driving a car.
F
face recognition Children with AUTISM cannot look at whole faces and match them to the same
recognize faces as readily as can typically develop- or a similar face with only one different feature
ing children. While in the past this was wrongly (eyes, nose, or mouth). The second study assessed
attributed to a supposed inability to recognize faces children with high-functioning autism or language
all at once, researchers now believe that autistic impairment or delay. In this second study, children
children do appear to process faces all at once, just saw only one isolated face part (such as the mouth)
like other children, although their focus may be a that was different in the face comparison test, and
bit more narrowly centered on the region of the they were asked to identify the face part that dif-
mouth. fered in the whole face. Both upright and inverted
This suggests that face recognition abnormalities faces and face parts were shown to all children.
in autism are not fully explained by problems with As expected, normal children and children with
whole-face processing and that there is an unusual language delays were better at recognizing face
significance of the mouth region when children parts represented in the whole face. These children
with autism process information from people’s were most accurate at identifying faces based on
faces. Scientists suggest this may be a result of the differences in eyes. The autistic children showed an
autistic child’s specific problem with processing advantage over typical children in recognizing dif-
facial information from the eyes, or because of an ferences in the mouth, but were far less efficient
aversion to looking at eyes, so that the mouth takes than normal children at telling differences in faces
on greater significance as a primary way of commu- from the eyes.
nicating for the autistic child. This is consistent with
studies that show children with autism are delayed
by several years in spontaneously following shifts facilitated communication (FC) A discredited
of gaze from others and that they depend on vocal method of communication in which a “facilitator”
cues to establish attention. supports the hand or arm of the autistic patient while
It is also possible that autistic impairments in he or she uses a typewriter or computer keyboard,
language functioning foster a tendency to pay more or an alphabet facsimile. The method is based on
attention to mouths so the child can make sense of the idea that the autistic person has an “undisclosed
speech via lip reading, especially when other com- literacy.” The facilitator typically pushes against the
municative cues from the eyes are inaccessible. autistic person’s arm and finger ostensibly without
In nonautistic individuals, when a picture of a affecting key selection, so that the autistic person
face is turned upside down, recognition is severely can push them toward the desired key.
disrupted, much more so than with inversion of The technique was developed in Australia by
nonface objects. This has been taken as evidence Rosemary Crossley for people with severe physical
that people typically recognize a face all at once, as handicaps. In the United States, the center for FC is
an entire unit. Syracuse University, which houses the Facilitated
In a Boston University study, researchers studied Communication Institute. The institute, established
face recognition first with normal children between in 1992, conducts research, provides training to
nine and 11. In this study, children were asked to teach people to become facilitators, hosts seminars

79
80 Family Educational Rights and Privacy Act

and conferences, publishes a quarterly newsletter, have the right to review education records within
and produces and sells materials promoting FC, 45 days of their application and to request a change
including a six-part video series. of records that the parent or student believes to be
Since its introduction in the United States in inaccurate or misleading.
1990, it has generated a growing tide of contro- Individuals also have the right to request disclo-
versy. In fact, repeated studies have supported the sure of records that contain personally identifiable
notion that the “message” is actually coming from information.
the facilitator rather than the autistic individual. Under the act, such information may also be
Facilitators may be either deliberately faking their disclosed without consent to school officials with
role in the process or unconsciously transmitting a legitimate educational interest. (The definition of
their impressions of what they believe the autistic “school official” includes an individual employed
person might want to communicate, rather than by a school district as an administrator, supervi-
actually intuiting the unconscious desires of the sor, teacher, or support staff member and may also
autistic individuals from slight hand movements. include other individuals performing official func-
Tests have not supported the authenticity of facili- tions, such as school board members.)
tated communication, and in 1994 the American FERPA is important legislation for parents of
Psychological Association (APA) asserted that studies children with learning disabilities who seek services
have repeatedly demonstrated the method is not sci- under the INDIVIDUALS WITH DISABILITIES EDUCATION
entifically valid. The American Academy of Pediatrics ACT because it governs the circumstances under
likewise considers this technique as ineffective. which information related to a child’s academic
Because of its supposed ability to give the non- performance and learning needs may be made
verbal autistic person the ability to communicate, available to others.
facilitated communication has been used to elicit
accusations of abuse. But according to the APA,
information obtained as a result of facilitated com- family history An important component of a
munication should not be used to confirm or deny thorough health assessment. A family history will
allegations of abuse or to make diagnostic or treat- identify developmental factors, together with fam-
ment decisions. ily events, dynamics, and other conditions, that
“Facilitated communication is a controversial may have had an impact on the individual. A fam-
and unproved communicative procedure with no ily history may also point toward potential genetic
scientifically demonstrated support for its efficacy,” links between an individual’s condition and those
according to a 1994 position statement by the APA. of parents or other family members.
While some people passionately believe that facili- If parents have a child with AUTISM, there is an
tated communication has given language to those increased likelihood, estimated at 5 percent to 8
who could not previously speak, most experts in percent, that any children they have in the future
autism insist that this type of communication is will also develop autism. Many studies have iden-
inherently unreliable. tified cognitive disabilities, which sometimes go
Despite the lack of studies proving it works, and undetected, in siblings of autistic children. Siblings
despite evidence of widespread facilitator manipu- should be evaluated for possible developmental
lation, FC is sometimes commonly used in SPECIAL delays and learning disabilities, such as dyslexia.
EDUCATION. See also GENES AND AUTISM; GENETIC MARKER.

Family Educational Rights and Privacy Act fathers Teaching a father how to talk to and
(FERPA) This act, also known as the Buckley play with his autistic child in a home setting can
Amendment, outlines procedures and guidelines for improve communication and increase the number
maintaining and disclosing student records. Under of intelligible words the youngster speaks by more
this law, parents and students over 18 years of age than 50 percent, according to a 2005 study at the
fenfluramine 81

University of Florida, published in the journal Nurs- child’s allergy symptoms improve, but the child
ing Research. calmed down and was doing better in school. Even-
Caring for an autistic child can be a never-end- tually, Dr. Feingold began to try this regimen (the
ing, difficult job. In most cases care is provided by “K-P diet”) on children with behavior problems and
mothers, leaving many fathers feeling as if they autism who had not responded to any other treat-
cannot connect with their autistic child, researchers ment. The results were encouraging and began to
say. During training, fathers learned to initiate play appear in newspaper articles.
with their children through animated repetition of In 1973, after eight years of clinical research,
their children’s vocalizations and actions. Fathers Dr. Feingold announced his findings at a meeting
were told to resist the temptation to direct their of the American Medical Association and published
child’s play and instead to follow the child’s lead. articles in various medical journals. His work was
Researchers were surprised to find that unlike greeted with enthusiasm by his colleagues, who
the mothers in a previous study, many fathers actu- had been seeing an alarming increase in the num-
ally took the lead in training their spouses and other ber of children diagnosed as hyperactive. However,
family members in the techniques they learned. others in the food and drug industry disagreed with
Researchers believe it is important for both the his conclusions vehemently.
child’s mother and father to be involved in parent Dr. Feingold’s book Why Your Child Is Hyperac-
training whenever possible. Potential benefits that tive was published in 1974, after which the press
may follow from a father’s participation include dubbed his diet the FEINGOLD DIET.
increased frequency of interaction and improved
quality of interaction between a father and his child
with autism, increased treatment time for the child, Feingold diet A special elimination diet popular
and support for the child’s mother. with parents of individuals with AUTISTIC DISORDER
that excludes foods believed to contain salicylate
compounds (such as tomatoes, apples, and oranges)
Feingold, Ben F. (1900–1982) Pediatric allergist as well as synthetic colorings and flavorings and
who developed a special diet, based on eliminating preservatives. This diet is believed by some experts
preservatives and artificial dyes and colorings, for (and many parents) to ease the symptoms of autis-
children with hyperactivity and behavior problems tic children.
such as AUTISTIC DISORDER.
Starting his practice of medicine as a pediatri-
cian, Dr. Feingold taught pediatrics at Northwestern fenfluramine A drug no longer available that had
University Medical School, and later became chief been considered useful in some, but not all, studies
of pediatrics at Cedars of Lebanon Hospital in Los of AUTISTIC DISORDER. The drug had been used pri-
Angeles. He specialized in child and adult allergies, marily to treat hyperactivity, stereotypy, and with-
and he retired at the age of 81 as chief emeritus drawal in autistic individuals.
of the Department of Allergy of Kaiser-Permanente Some people with autism have abnormally high
Medical Center in San Francisco. blood levels of the mood-regulating neurotransmit-
Dr. Feingold used a diet similar to one devel- ter serotonin, and fenfluramine decreases serotonin
oped at the Mayo Clinic to treat skin conditions concentrations. As a result, well into the 1990s
and asthma related to aspirin sensitivity. The elimi- many children and some adults with autism were
nation diet excluded aspirin and foods believed to treated with fenfluramine, which seemed to have
contain salicylate compounds, as well as synthetic had some positive effects on some individuals.
colorings and flavorings. When patients dramati- However, in 1997 fenfluramine was taken off the
cally improved, Feingold began to recommend the market because of apparent damage to the heart in
food plan more widely at the clinic. some patients who were taking it in combination
Some of the parents of allergic children with with other drugs to lose weight. As part of the $3.75
hyperactivity reported that not only did their billion settlement, the company recommended that
82 floor time

those who took fenfluramine as a diet pill should During floor time, parents try to open and close
consult their doctors about whether to have the as many “circles of communication” as possible.
health of their hearts assessed. Another way to think of this is “back-and-forths”
or reciprocal exchanges.
There are five steps in floor time:
floor time An informal play session often used
with autistic children that uses interactive experi- 1. Observe the child
ences to enable a child to move to the next emotional 2. Open the circle of communication
developmental stage. Floor time is an engaging, 3. Follow the child’s lead
playful experience between a child and a partner, 4. Expand and extend
which facilitates the six stages of emotional devel- 5. Child closes circle of communication
opment. These stages are the foundations of rela-
tionships, communication, and learning. The idea For example, if the child hugs a doll, the parent
of floor time was developed by psychiatrist Stanley asks the doll’s name. The child answers, or gives
Greenspan, M.D., as part of his DIR (Developmental the doll a hug and offers it to the parent for a kiss.
Individual-Difference Relationship-Based Model). This response closes the communication that the
An alternative to the behaviorism approach, DIR is parent has opened.
based more on teaching skills. Another example:
At its core, floor time involves a parent playing
eye-to-eye with a child and letting the child be the 1. A child asks for milk.
boss. The adult cedes control and lives in the child’s 2. Parent opens the circle of communication by
moment. Ideally, during floor time parents should asking more questions: “Do you want choco-
do what their child wants to do, even if it means late milk or plain milk? Do you want a big glass
playing dollhouse or battleships over and over. or a small glass?”
Greenspan stresses that effective communication 3. If the child has trouble with choices, the parent
with children is increasingly ignored in daily life. can make the choices very obvious, asking, “Do
More and more, he says, parents think that being you want the milk in a box or in a glass?”
in the same room with a child is the same thing 4. Parent then tries to pour the milk before open-
as interacting with that child, no matter how dis- ing the carton. Can the child solve this prob-
tracted the parent might be. lem? Comments can help the child process:
Greenspan, a clinical professor of psychiatry and “Oh, no! Why won’t the milk come out?”
pediatrics at George Washington Medical School,
began developing floor time in the 1970s. He spe- Greenspan believed that his floor time approach
cializes in early childhood development and out- should begin when a child is a baby or toddler, but
lined his floor time approach in The Child with Special it does not have to be restricted to young children.
Needs in 1998.
His concept is better known among parents with
autistic children. About half of the 200 autistic chil- fluoxetine (Prozac) An antidepressant of the
dren who received floor time therapy with Greens- class called selective serotonin reuptake inhibitors
pan and their parents became fully functioning (SSRIs). Traditionally prescribed for depression,
children, according to one anecdotal study; another the SSRIs have also been shown to significantly
30 percent made substantial progress. improve symptoms associated with AUTISTIC DISOR-
According to Greenspan, floor time focuses on DER and ASPERGER’S SYNDROME. Fluoxetine helps
relationships by helping to build emotional capac- to lessen stereotyped behaviors and self-injurious
ity, thought processes, and communication, while movements with few side effects.
helping a parent figure out a child’s personality and Although there are no psychiatric medications
how he thinks. It can build empathy, creativity, that can directly target autism itself, many antide-
warmth, and reflective thinking. pressant medications can be used to treat specific
fragile X syndrome 83

symptoms often found in autism, such as aggression, STEREOTYPIES and self-injurious movements with
self-injury, anxiety, depression, obsessive-compulsive few side effects.
disorders, and attention deficit hyperactivity dis- Although fluvoxamine is not as popular as
order (ADHD). In particular, serotonin reuptake FLUOXETINE (Prozac), it causes less agitation and
inhibitors (SSRI) have been effective in treating more sedation.
depression, obsessive-compulsive behaviors, and
anxiety that are sometimes present in autism. Side Effects
Because researchers have consistently found Mild side effects might include headache and seda-
abnormally high levels of the neurotransmitter tion, which are not usually severe enough that peo-
serotonin in the blood of a third of individuals with ple stop taking the medication.
autism, experts suggest that the SSRI drugs that
lower serotonin levels could potentially reverse
some of the symptoms in autism. Prozac is one drug folic acid A B vitamin vital to pregnant women
that has been studied as a possible autism treatment, to prevent neural tube defects in unborn children.
and studies have shown that they may reduce the Folic acid has also been linked to both improving,
frequency and intensity of repetitive behaviors, and and causing, autism.
may decrease irritability, tantrums, and aggressive In 1992 the U.S. Food and Drug Administration
behavior. Some children have shown improve- (FDA) recommended a folic acid intake of 400 mcg
ments in eye contact and responsiveness. per day. But because the FDA worried that women
For some classes of drugs, the doses that can ignored their recommendations, food has been for-
reduce symptoms such as aggression or anxiety are tified with folic acid since 1998. As a result, neural
much lower for people with autism than for other tube defects have dropped substantially.
patients. For example, the best dose for SSRI drugs Yet some experts expressed concern that folic
such as Prozac may be only one-third of the typi- acid might be related to the increase in autism
cal starting dose for depressed patients. Too high a cases. Part of the problem is that there is no gov-
dose in patients with autism may trigger agitation ernment system in place, through the FDA or any
or insomnia. other health organization, to monitor the effects of
There is no medical test to determine whether this supplement.
Prozac or another antidepressant medication will The food supply did not include folic acid until
work best. Instead, doctors use a “trial and error” 1998, and autism rates began to rise substantially
approach, as dosages need to be adjusted differ- before then. Almost no studies have been done
ently for each person, and one medication may be to look directly or even indirectly for the adverse
ineffective or have negative effects while others are effects of elevated folate intakes. There is no solid
helpful. evidence that folic acid causes a person to be more
likely to have autism, but there is no evidence prov-
Side Effects ing it is not in some way responsible, either.
Mild side effects might include headache, sedation, On the other hand, there are many proponents
or agitation, which are not usually severe enough of using large amounts of folic acid as an autism
to make people stop taking the medication. treatment, including the Autism Research Institute
See also FLUVOXAMINE. founded by Dr. Bernard Rimland.

fluvoxamine (Luvox) Antidepressant of the class food allergies See ALLERGY TO COW’S MILK; FEIN-
called selective serotonin reuptake inhibitors GOLD DIET.
(SSRIs). Traditionally prescribed for depression, the
SSRIs have also been shown to significantly improve
symptoms associated with AUTISTIC DISORDER and fragile X syndrome A hereditary condition that
ASPERGER’S SYNDROME. Fluvoxamine helps to lessen causes a wide range of mental impairment, from
84 fragile X syndrome

mild learning disabilities to severe MENTAL RETAR- tory of fragile X syndrome in which the condition
DATION (mostly in boys). The most common inher- suddenly appears in a number of offspring.
ited form of mental retardation, the condition got
its name from the fact that one part of the X chro- Symptoms and Diagnostic Path
mosome has a defective piece that appears pinched This syndrome affects individuals in a wide vari-
and fragile when seen under a microscope. Also ety of ways. Children with fragile X syndrome are
known as Martin-Bell syndrome, marker X syn- often described as sweet and loving, with a strong
drome, or Escalante syndrome, fragile X syndrome desire for social interaction and humorous situa-
is associated with a number of physical and behav- tions. Some children experience significant chal-
ioral characteristics. lenges, including behavioral problems, while the
The behavior of some children with fragile X impact on others is so minor that they will never be
syndrome is quite similar to that of children with diagnosed. Boys and girls experience quite differ-
autism. Although most children with fragile X syn- ent physical, cognitive, behavioral, sensory, speech,
drome do not have all the characteristics of autism, and language problems. In general, however, girls
about 15 percent are diagnosed as autistic. More with fragile X either do not have the characteristics
often, children have “autistic-like” features, such as seen in boys, or the characteristics show up in a
poor EYE CONTACT, HAND FLAPPING, and poor SOCIAL milder form.
SKILLS. The difference is probably due to the fact that
The syndrome accounts for approximately 5 girls have two X chromosomes instead of the one
percent of mental retardation in boys, but has also that boys carry. This means that girls with fragile
been linked to learning disabilities, speech and lan- X have two sets of instructions for making FMRP
guage disorders, and mathematics and motor dis- (the fragile X mental retardation protein)—one
abilities. that works and one that does not. Boys with frag-
The biological cause of fragile X and the pat- ile X have only one X chromosome with its non-
tern of transmission of the disease are complex. functioning FMR1 (fragile X mental retardation
Fragile X syndrome is transmitted from parent 1) gene. It appears that girls are able to produce
to child through the DNA in the sperm and eggs. enough of the FMRP to fill most of the body’s
Many inherited diseases (such as sickle cell ane- needs, but not all.
mia and hemophilia) are caused by a single error Anxiety in both boys and girls manifests itself in
in the genetic code in a person’s DNA. Fragile X various ways. Some children with fragile X have
syndrome, on the other hand, is not caused by a trouble with changes in routine or stressful events
single change in DNA, but by the multiplication of such as fire drills. Parents often report that their
part of the genetic information. This is known as a children stiffen up when angry or upset, becom-
trinucleotide repeat disorder. ing rigid and very tense. Crowds and new situations
In normal children, a section of the DNA in the may cause boys to whine, cry, or misbehave so as
FMR1 gene is repeated about 30 times. In a child to get out of the overwhelming situation. Many of
with fragile X, that DNA section repeats about 55 to the behavior problems of both boys and girls with
200 times. Someone with the full mutation has 200 fragile X syndrome overlap with the conversational
to 800 repeats. problems they have. The poor eye contact and
Because most genes have a very low rate of problems in keeping a conversation going cause
mutation, most children who inherit a disease have many social weaknesses. Perseverative speech and
at least one parent who is a carrier for that disease, self-talk may be symptoms of anxiety.
since new mutations are rare. But the FMR1 gene Many children with fragile X syndrome have
can be unstable, which leads to frequent muta- some cognitive problems, and their overall potential
tions. Once the FMR1 gene changes from normal to may be lower than that of their peers and siblings.
unstable (called a “permutation”), it is highly likely Children may be both mentally retarded and learn-
that it will mutate from one generation to the next. ing disabled, meaning that their overall IQ is lower
This means that there can be a family with no his- than average, but that they have particular weak-
fragile X syndrome 85

nesses on specific skills that are above and beyond clothing, or objects, which may be connected to
what would be predicted based on their intelli- sensory processing problems and anxiety. Sensory
gence. At the same time, they may perhaps dem- processing problems may include tactile defensive-
onstrate relative strengths in other areas. Children ness, sensitivity to sound or light, and poor eye
with fragile X syndrome often have these varying contact. About 90 percent of boys with fragile X
patterns. Thinking skills are also affected by atten- syndrome are reported to have some type of sen-
tion deficit hyperactivity disorder (ADHD), seizure sory defensiveness.
disorders, anxiety, speech and language disorders, Girls A permutation in the FMR1 gene typi-
sensory motor problems, and other issues that may cally has little or no effect on a girl’s behavior and
affect test taking and learning. educational ability, but it may affect several facial
Many boys, and some girls, are described as characteristics, causing, for instance, prominent
mentally retarded. Children with fragile X syn- ears and prominent jaw. Girls with the full muta-
drome progress at a slower developmental pace tion may have some of the physical features asso-
and with a lower end result than do normally ciated with fragile X boys, including a long face.
developing children. Disabilities in adapting to the Some girls with the full mutation have learning
environment refer to delays in life skills, not just disabilities. About 30 percent of girls with the full
academics. However, many children with fragile X mutation score above 85 on an IQ test, with the
achieve more than would be expected based upon other 70 percent mostly in the borderline or mild
an IQ score alone. mental retardation range.
Boys Several physical features are commonly Girls may show less hyperactivity but still have
associated with fragile X syndrome. Boys with many symptoms of attention deficit disorder. Girls
fragile X often have distinctive facial features, con- with the full mutation of the fragile X gene appear
nective tissue problems, and enlarged testicles that to have some behavioral and emotional difficulties.
appear after the onset of puberty. However, none Shyness, anxiety, depression, and difficulties with
of these features occurs in all boys with fragile social contacts are most often mentioned as charac-
X. The primary physical features of fragile X syn- teristics of girls with fragile X.
drome in boys are long faces and prominent, long Thirty percent of females with fragile X are con-
ears—characteristics that are more common in boys dered genetic carriers of the condition. They appear
over age 10. However, long ears are also common to be more mildly affected, and may experience
among mentally retarded boys who do not have shyness, anxiety, and panic attacks. Sons of a car-
fragile X syndrome. When compared to mentally rier female have a 38 percent risk of mental retar-
retarded boys who do not have fragile X syndrome, dation; daughters have a 16 percent risk.
those with fragile X have a larger head circumfer- In the past, the only laboratory test for fragile X
ence, head breadth, and head length. syndrome was a chromosome test, but in 1991 a
Up to 80 percent of boys with fragile X syndrome DNA test (the FMR1 gene test) was introduced as
have delays in their cognitive ability; between 10 the most accurate way to detect fragile X syndrome.
and 15 percent of boys tested may have IQs in The chromosome test is still available through most
the borderline or mild mental retardation range. labs, however, and is used for a variety of diagnos-
Up to 90 percent of boys with the condition are tic purposes.
considered to be distractible and impulsive, with
many meeting criteria for diagnosis of attention Treatment Options and Outlook
deficit hyperactivity disorder, which can appear as There is no cure for fragile X syndrome, but there are
hyperactive/impulsive subtype, inattentive sub- many treatments that may help the children with
type, or the combined form. These children often the disorder to progress. Early intervention during
may have short attention spans and difficulty stay- preschool is important, but to reach full potential, a
ing on task. child may need speech and language therapy, occu-
Many boys have unusual, stereotypic behav- pational therapy, and physical therapy to help with
iors, such as hand flapping and chewing on skin, the physical, behavioral, and cognitive issues typical
86 free and appropriate public education

of the condition. In later school years, SPECIAL EDU- a great deal of time and effort for them to develop
CATION programs that fit a child’s individual needs the social skills needed to interact successfully with
can be effective, although children should be inte- other children, but it is important to start early. In
grated into regular education whenever possible. At addition, bullying in middle and high school can be
home, parents can try to provide a regular routine a major problem for students with autism, and the
in a calm atmosphere. Medications can help treat development of friendships is one of the best ways
symptoms of aggression, seizures, hyperactivity, and to prevent this problem.
short attention span. Friendships can be encouraged informally by
The outlook for children with fragile X syndrome inviting other children to the home to play. In
is best when the disease is diagnosed early. In most school, recess can be a valuable time for teachers to
cases, the mental retardation typical of this condi- encourage play with other children. Furthermore,
tion is mild, and people with fragile X syndrome time can be set aside in school for formal “play
usually have a normal lifespan. time” involving children with autism and volunteer
peers. Typical children usually think that play time
is much more fun than regular school, and it can
free and appropriate public education SPECIAL help develop lasting friendships. This is probably
EDUCATION and related services provided at public one of the most important aspects of a student’s
expense, under public supervision and direction INDIVIDUALIZED EDUCATION PROGRAM.
and without charge, to meet the standards of the Children with autism often develop friend-
state’s department of education and are based on ships through shared interests, such as computers,
an INDIVIDUALIZED EDUCATION PROGRAM. school clubs, model airplanes, and so on. Parents
Under Public Law 94-142 and IDEA (the INDI- and teachers should encourage activities that the
VIDUALS WITH DISABILITIES EDUCATION ACT), children
autistic individual can share with others.
with certain disabilities must be provided with “a
free appropriate public education which empha-
full inclusion A placement in which a special-
sizes special education and related services. . . .”
education student receives instruction within the
Under the act, states are required to ensure that
regular classroom setting for the entire school day.
disabled children have equal access to educational The student may receive help from a paraprofes-
services but, states are not expected to provide all sional who provides necessary support for the child
of the services that may be required for students to to be successful.
reach their full potential.
See also EDUCATION FOR ALL HANDICAPPED CHIL-
DREN ACT (PL Law 94-142). functional MRI (fMRI) A type of magnetic reso-
nance imaging (MRI) scanning in which scientists
can see what parts of the brain are active while a
friends Although young children with autism may subject is performing a task, such as solving a math
seem to prefer to be by themselves, one of the most problem. fMRI can highlight which areas of the brain
important issues for older children and adults is the in some individuals with autism are active during
development of friendships with peers. It can take various tasks.
G
gender differences Autism affects about three or damage than girls, and it is now almost universally
four times as many boys as girls, although experts accepted that there is an organic cause for autism.
are not sure why. Hans Asperger originally believed More recently, researchers have suggested a
that no girls were affected by the syndrome he genetic explanation for the differences, which may
described in 1944, although clinical evidence later be located on the X chromosome. Girls inherit two
caused him to change his thinking. X chromosomes, one from each parent, but boys
In one 1981 study, researchers found that among inherit only one, from their mothers. Therefore, it
people with high-functioning autism or ASPERGER’S could be that the X chromosome girls inherit from
SYNDROME there were as many as 15 times as many their fathers contains an imprinted gene which
boys as girls. On the other hand, when research- “protects” the carrier from autism, thus making
ers looked at individuals with learning problems as girls less likely to develop the condition than boys.
well as autism, the ratio of boys to girls was closer This theory has been used to support Asperger’s
to 2:1. This suggests that while girls are less likely view that autism and Asperger’s syndrome are at
to develop autism, when they do they are more the extreme end of a spectrum of behaviors nor-
severely impaired. mally associated with “maleness.”
Other experts speculate that many girls with Researchers have outlined several possible ways
Asperger’s syndrome are never referred for diagno- that the autism gene could be transmitted on the
sis, and so are simply missing from statistics. This sex-linked X chromosome. However, researchers
could be because the diagnostic criteria for Asperg- are still a long way from identifying a simple genetic
er’s syndrome are based on the behavioral char- cause for autism. It is likely that several genes on
acteristics of boys, who are often more noticeably different chromosomes will be found to be associ-
“different” or disruptive than girls with the same ated with autism, which means that the idea that
underlying deficits. Girls with Asperger’s syndrome autism is based on the X chromosome alone may
may be better at hiding their problems in order to not represent the full picture.
fit in with their peers and in general may have a
more even profile of SOCIAL SKILLS.
Another hypothesis is based on evidence that in genes and autism The first gene specifically linked
the general population, girls have better verbal and to autism risk was identified in March 2004, but sci-
social skills, while boys excel in visuo-spatial tasks. entists suspect there may be from two to 100 genes
There may be a neurological basis for this, so that involved in the development of autism. The way
autism can be interpreted as exaggeration of “nor- different symptoms of the AUTISM SPECTRUM DISOR-
mal” sex differences. But environmental and social DERS (ASDs) affect family members and the wide
factors also may play a part in sex differences in variety of symptoms in ASD tell researchers there
ability, which suggests that the poorer verbal skills must be more than one gene. Although autism is
of boys may have no direct connection to their a complex disorder, the identification of one gene
higher incidence of autism. linked to autism should theoretically simplify the
In 1964 autism expert Bernard Rimland pointed search for others. Identifying these genes should
out that boys tend to be more susceptible to organic lead to better diagnostic tests and treatments.

87
88 genes and autism

Some genes may place a person at greater risk For example, many people with ASDs also have
for autism; these are called “susceptibility genes.” EPILEPSY, a condition marked by seizures. If scien-
Other genes may cause specific symptoms or deter- tists can understand what happens in epilepsy, they
mine how severe those symptoms are. Still other may also find clues to what happens in autism.
mutated genes might add to the symptoms of
autism because the genes or their products are not Searching for the Autism Gene
working properly. A “genome” includes all the genetic material in a
The link between genes and ASD is strengthened person’s cells—including DNA, genes, and chromo-
by results from twin studies, family member stud- somes. Usually, researchers screen the genome of a
ies, and observations of disorders linked to autism. family or a set of families that has more than one
member with an ASD to look for common features
Studies of Twins with Autism and differences. Using genome-wide screens, scien-
Scientists have studied autism in both identical tists have identified a number of genes that might
twins (who are genetically the same) and frater- be involved in autism. Although some analyses
nal twins (who are genetically similar, but not suggest that there may be from two to 100 genes
identical). If one identical twin has autism, 60 involved in ASDs, the strongest evidence points to
percent of the time the other twin also will have areas on chromosomes 2, 7, 13, 15, 16, 17, and X.
autism. When one fraternal twin has autism, the Chromosome 2 Scientists know that areas of
chance that the other twin also has autism is much chromosome 2 are the neighborhoods for “homeo-
lower—about 5 percent. If genes were not involved box” (HOX) genes, the group of genes that con-
in autism, the rate of autism would be the same for trol growth and development very early in life. An
both types of twins. individual has 38 different HOX genes in a chro-
mosomal neighborhood, and each one directs the
Family Studies of Autism action of other genes in building the body and body
Studies of family histories show that a sibling’s systems. Expression of these HOX genes is critical
chance of having autism is between 2 percent and to building the brain stem and the cerebellum, two
8 percent, which is much higher than the chance areas of the brain where functions are disrupted
of someone in the general population. Also, some in ASDs.
of the autism-like symptoms, such as delays in lan- Chromosome 7 Researchers have found a
guage development, occur more often in parents strong link between this chromosome—especially
and brothers and sisters of people with autism than a region called AUTS1—and autism. Most of the
in families who have no members or relatives with genome studies completed so far have found that
ASDs. Because members of the same family are AUTS1 plays some role in autism. In addition, evi-
more likely to share genes, something about these dence suggests that a region of chromosome 7 is
genes’ sequences appears to be related to autism. also related to speech and language disorders. The
fact that ASDs affect these functions suggests autism
Diagnosable Disorders and Autism may involve this chromosome.
About 5 percent of the time, a person with autism Chromosome 13 In one study, 35 percent of
also has a coexisting single-gene disorder, chromo- families with autism showed a link to chromosome
some disorder, or other developmental disorder. 13. Researchers are now trying to replicate these
This type of co-occurrence helps researchers who findings with other populations of families affected
are trying to pinpoint the genes involved in autism. by autism.
Similar disorders with similar symptoms may have Chromosome 15 Genome-wide screens and
similar genetic beginnings. When one disorder other studies show that a part of this chromo-
commonly occurs along with another, it could be some may play a role in autism. Genetic errors
that one is actually a risk factor for the other. This on this chromosome cause ANGELMAN SYNDROME
kind of information can provide clues to what actu- and PRADER-WILLI SYNDROME, both of which share
ally happens in autism. some behavioral symptoms with autism. Errors
genes and autism 89

on chromosome 15 occur in up to 4 percent of to use their other X chromosome to function nor-


patients with autism. mally, while males, without such a spare, show
Chromosome 16 Genes found on this chromo- symptoms of the condition.
some control a wide variety of functions that, if dis-
rupted, cause problems that are similar or related to Potential Genes
symptoms of autism. For example, a genetic error HOXA1 gene Researchers have found evi-
on this chromosome causes TUBEROUS SCLEROSIS dence that autism may involve the HOXA1 gene,
COMPLEX, a disorder that shares many symptoms a homeobox gene that plays a critical role in the
with autism. Like individuals with autism, those development of important brain structures, cranial
with tuberous sclerosis are at higher risk for sei- nerves, the ear, and the skeleton of the head and
zures. Therefore, regions on this chromosome may neck. Researchers know that the HOXA1 gene is
be responsible for certain similar behavioral aspects active very early in life (between the 20th and 24th
of the two disorders. days after conception) and that any problem with
Chromosome 17 A recent study found the stron- the gene’s function causes problems with the devel-
gest evidence of linkage on this chromosome among opment of these structures, including autism.
a set of more than 500 families whose male members This gene is involved in DUANE SYNDROME, a rare
were diagnosed with autism. Missing or disrupted disorder that causes eye movement problems and
genes on this chromosome can cause problems such sometimes occurs with autism.
as galactosemia, a metabolic disorder that, if left In one study of persons with autism, nearly 94
untreated, can result in mental retardation. Galacto- percent of participants had mutations in the same
semia causes some of the same symptoms as autism, regions of HOXA1, which could mean that the
as does OCD. For example, APRAXIA of speech has region contributes to ASDs. In another study, nearly
been reported in both galactosemia and autism, and 40 percent of those with autism carried a specific
OBSESSIVE COMPULSIVE DISORDER, which is marked by mutation in the HOXA1 gene sequence—nearly
recurrent, unwanted thoughts (obsessions) and/or twice as many as those who had the same change
repetitive behaviors (compulsions), is often a prob- but who did not have autism and were not related
lem seen in autistic individuals. to anyone with autism. In addition, 33 percent of
Chromosome 17 also contains the gene for the those who did not have autism but were related
serotonin transporter, which allows nerve cells to to someone with autism also had the mutation in
collect SEROTONIN. Serotonin is involved in emotions their HOXA1 gene.
and helps nerve cells communicate. These findings suggest that autism is not caused
The X chromosome Two disorders that share simply by an errant gene, but that some other factors
symptoms with autism (FRAGILE X SYNDROME and must also be involved. If researchers can confirm an
RETT DISORDER) are typically caused by genes on the association between this mutation and ASDs, they
X chromosome, which suggests that genes on this may be able to use detection of the mutation as an
chromosome may also play a role in ASDs. early test for autism, allowing important interven-
People usually have 46 chromosomes in most tions to start as early in life as possible.
of their cells (23 from their mother and 23 from Another study found that increased head size in
their father); after fertilization, the two individual ASD patients was associated with a different muta-
sets form 23 pairs of chromosomes. The chromo- tion in the HOXA1 gene. About 20 percent of per-
somes in the 23rd pair are called the “sex chromo- sons with autism have large head size—it is one of
somes”—X and Y—whose combination determines the most consistently reported physical features of
a person’s sex. Males usually have one X and one people with autism.
Y chromosome, and females usually have two X The reelin (RELN) gene Located on chromo-
chromosomes. some 7, this gene plays a crucial role in the develop-
The fact that more males than females have ment of connections between cells of the nervous
autism supports the idea that the disorder involves system. Researchers think that abnormal brain
genes on the X chromosome. Females may be able connections may play a role in autism. In addition,
90 genetic marker

people with autism and their parents and siblings genetic marker A specific gene or section of DNA
have lower levels of certain types of the reelin pro- with an identifiable physical location on a chromo-
tein, which may mean that the gene is not func- some that produces a recognizable trait. Scientists
tioning normally. have been searching for genetic markers linked
Gamma-aminobutyric acid (GABA) pathway to AUTISM SPECTRUM DISORDERS (ASD) or autism,
genes GABA compounds are neurotransmitters, which would provide an easier way to diagnose
which means they help different areas of the ner- these conditions.
vous system communicate with each other. GABA Initial results suggest there may be a link between
receptor genes are involved in early development ASD and tiny sections of several chromosomes.
of parts of the nervous system and help with com- Scientists are fairly certain there is more than one
munication between these parts throughout life. gene that influences the development of autism. In
A problem in the GABA pathway can cause fact, they believe that many genes interact to result
some of the symptoms of ASDs. For instance, epi- in autistic behavior.
lepsy may in part be caused by low levels of GABA By studying families with at least two autistic
compounds. Many people with autism also have children, scientists have been able to narrow their
epilepsy and low levels of GABA. search to a few small pieces of chromosomes (the
In studies of mice, disrupting the GABA path- carriers of genetic information).
way causes seizures, extreme reactions to touch They have found that in some autistic children,
and sound, and stereotyped actions—symptoms a small region of chromosome 15—an area that is
also common in autism. Research now focuses on highly unstable and prone to genetic rearrange-
whether medications used to treat these problems ment—is duplicated or deleted. The region also
can also reduce some of the symptoms of autism. includes genes for PRADER-WILLI SYNDROME and
Serotonin transporter gene Located on chromo- ANGELMAN SYNDROME, two other disorders that can
some 17, the serotonin transporter allows nerve cells trigger autistic-like behavior. Further, it contains
to collect serotonin so that they can communicate genes that recognize a powerful neurotransmitter
with each other. Abnormal levels of serotonin appear in the brain called GABA (gamma-aminobutyric
to be involved in depression, alcoholism, obsessive- acid). Scientists have found evidence that at least
compulsive disorder, and many other problems. one form of autism is associated with a genetic
Research shows that people with autism have marker near a GABA receptor gene.
levels of serotonin between 25 percent and 50 per- Researchers concluded that children with a par-
cent higher than persons without autism. High sero- ticular genetic profile may have a specific subtype of
tonin levels may explain why people with autism autism that can be distinguished from other forms of
have problems showing emotion and handling autism. These children all have two copies of the same
sensory information, such as sounds, touch, and small region of chromosome 15, while nonautistic
smells. This higher serotonin level may be caused children have only one copy per chromosome.
by errors in the serotonin transporter gene. Scientists hope that finding genes related to
Researchers are now studying whether medica- autism will help provide a better way to diagnose
tions that regulate serotonin levels may improve the condition. For example, autistic children share
behavior in people with autism, and whether a pattern of behaviors—including speech delay,
there are any abnormal patterns in the genes that lack of social skills, and “stereotyped” or repetitive
make and regulate serotonin and its pathway behaviors—that seem to cluster together with a spe-
components. cific genetic defect. But some of these children have
Isolating the genetic causes of autism should seizures and low muscle tone, characteristics not
allow clinicians to develop better tests to identify necessarily associated with autism. These children
at-risk children before they show symptoms of the all have a duplication of part of chromosome 15.
disorder. Experts hope that the major genetic com- Studies show that the genetic errors that lead
ponents of the disorder will be identified by 2009. to autism are introduced when a piece of a chro-
See also GENETIC MARKER. mosome breaks apart and recombines during the
guardianship 91

formation of sperm and eggs. As a result, in some been developed for those individuals who have
children with autism there is an extra copy of a allergic responses to gluten and casein.
piece of chromosome 15, while in others the piece
is missing. Scientists suspect that the gene or genes
responsible for the behavioral changes we see in Grandin, Temple An associate professor of ani-
some children with autism are located in this area of mal science at Colorado State University and a
chromosome 15. The scientists are not sure which well-known person with autism who has written
of the genes in the region lead to autistic behaviors, books about her experiences with the condition.
but they have identified a few strong candidates. Grandin is the author of Emergence: Labeled Autis-
Scientists have also found that the region of tic and Thinking in Pictures and is a designer of live-
chromosome 7 is particularly susceptible to break- stock-handling facilities. Half of the cattle in North
ing apart and recombining with its chromosome America are handled in facilities she has designed.
pair. Apparently, in some cases this recombination A popular speaker at colleges and autism con-
is abnormal, and parts of the chromosome are not ferences, she obtained her B.A. at Frankin Pierce
duplicated correctly. The result: a piece of chromo- College, her M.S. in animal science at Arizona State
some 7 is turned upside down. University, and her Ph.D. in animal science from
Researchers are narrowing down the potential the University of Illinois in 1989. Today she teaches
candidate genes on a variety of other chromosomes courses on livestock behavior and facility design at
by studying additional families and by using their Colorado State University and consults with the
existing genetic maps and genetic markers to test livestock industry on facility design, livestock han-
each potential gene candidate. dling, and animal welfare.
See also GENES AND AUTISM. She has appeared on television shows such as
20/20, 48 Hours, and CNN Larry King Live and has
been featured in People magazine, the New York Times,
Gilliam Autism Rating Scale A test designed for Forbes, U.S. News and World Report, and Time. She has
use by teachers, parents, and professionals that helps written more than 300 articles in both scientific jour-
to identify and diagnose autism in individuals ages nals and livestock periodicals on animal handling,
three through 22 years and to estimate the sever- welfare, and facility design. Grandin believes that
ity of the problem. Items on the GARS are grouped her autistic condition has helped her understand the
into four subtests, assessing stereotyped behaviors, way that animals think. “Autism made school and
communication, social interaction, and develop- social life hard,” she writes in her book, Animals in
mental disturbances. The GARS also includes a Translation. “But it made animals easy.”
summary score. The test can be completed in five to
ten minutes by those who know about the child’s
behavior. guardianship A legal appointment by the court
in which an individual or institution manages the
estate of a person with autism judged incapable (not
gluten-free (GF), casein-free (CF), and gluten-free necessarily incompetent) of caring for his or her own
casein-free (GFCF) diets These are three differ- affairs. Guardians (also called conservators) are also
ent types of diets that some families believe help responsible for the care of people who are unable
improve some symptoms of autism. Gluten is a sub- to care for themselves. A conservator/guardian also
stance found mainly in wheat, oats, rye, and barley; can be chosen to serve in the future when the par-
casein is a protein found in milk products. There ent is no longer able to serve.
is some suggestion that a diet free from these two In some states, guardians assist people while
types of substances found in many foods may help conservators manage estates. Many parents who
improve concentration and prevent digestive prob- have children with autism do not realize that when
lems in people with autism, although research has their children reach 18, they may no longer have
not substantiated this hypothesis. GFCF diets have legal authority over their care.
H
Haldol See HALOPERIDOL. legislation—such as Public Law 94-142: the EDUCA-
TION FOR ALL HANDICAPPED CHILDREN ACT OF 1975—
uses “handicap” to identify the disadvantaged status
haloperidol (Haldol) An antipsychotic neuro- of an individual with specific impairments as com-
leptic medication that was at one time the primary pared to others without such impairments.
medical treatment of autism. However, the risk of However, the term “handicapped” is no longer
serious side effects is significant in children, and considered an appropriate term to mean disability
although haloperidol was reported to improve some or disorder, because it places a perjorative emphasis
symptoms of autism, including motor stereotypies, on social status or defines an individual rather than
withdrawal and hyperactivity, its side effects have suggesting a particular difference. In the same man-
limited its usefulness. Muscle spasms of the neck ner that many individuals challenge the use of the
and back, twisting movements of the body, trem- word “disability” because it by definition focuses on
bling of fingers and hands, and an inability to move a negative condition, they may believe that “handi-
the eyes are among the more common side effects. cap” is best used in a legal context rather than in a
Others include speaking or swallowing problems, social one.
loss of balance control, masklike face, severe restless-
ness or need to keep moving, and shuffling walk, stiff-
ness of arms and legs, and weakness of arms and legs. head size Small head circumference at birth fol-
Less often there may be decreased thirst; difficulty in lowed by a rapid growth in head size in the first year
urination; dizziness, light-headedness, or fainting; of life may be the first physical warning sign of autism,
hallucinations; lip smacking or puckering; puffing of according to a study published in 2003. Researchers’
cheeks; rapid or wormlike movements of the tongue; findings could lead to earlier identification of autistic
skin rash; uncontrolled chewing movements; or children, who are now typically diagnosed at about
uncontrolled movements of arms and legs. age three. Experts say earlier intervention is more
Rarely, haloperidol may cause convulsions, dif- beneficial, and the study may help alert doctors to a
ficult or fast breathing, fast or irregular pulse, high possible, though not certain, diagnosis of autism in
fever, high or low blood pressure, increased sweat- the first months of life. Experts hoped that head size
ing, loss of bladder control, severe muscle stiffness, might give doctors a physiological marker for identi-
unusually pale skin, or unusual tiredness or weak- fying a child with autism. Currently, all doctors can
ness. do is watch for certain behaviors, most of which do
not emerge until a child is older.

hand flapping One type of repetitive movements Heller’s disease Another name for CHILDHOOD
that are typical of people with autism. DISINTEGRATIVE DISORDER.

handicap A term that refers to a disadvantage or hereditary factors See GENES AND AUTISM; GENETIC
impairment based on a disabling condition. Federal MARKERS.

92
history of autism 93

Higashi USA See BOSTON HIGASHI SCHOOL. children often demonstrated qualities showing that
they were not merely slow learners or emotionally
disturbed. As a result, he invented a new category,
higher cognitive functions A term that usually which he called early infantile autism (sometimes
refers to complex thinking skills such as judgment, called Kanner’s syndrome).
abstraction, problem-solving, and planning. Hans Asperger made the same discoveries at
See also HIGHER-ORDER THINKING. the same time, independently of Kanner, but the
patients he identified all were able to speak; this is
why the term ASPERGER’S SYNDROME is often used
higher-order thinking Advanced intellectual abili- to label autistic people who can speak (and whose
ties that go beyond basic information processing. early language development was intact).
Higher-order thinking involves such abilities as con- Long before Kanner incorporated the term
cept formation, understanding rules, problem-solv- “autism” into his label, the word (coined in 1912 by
ing skills, and the ability to look at information from Eugen Bleuler, who had already invented the term
multiple perspectives. “schizophrenia”) already had a meaning: “escape
Students exercise their higher-order thinking from reality.” Kanner used the term because he
abilities when they analyze, synthesize, and eval- believed the children gave the impression they
uate materials to which they have been exposed. were trying to escape from reality.
The construction or creation of new material also For several decades after the initial description of
requires higher-order thinking. autism, research on it was impeded by a lack of con-
In general, abilities in the area of higher-order sensus on its definition as well as by assumptions
thinking are closely linked to intellectual capacity. of continuity between autism and severe forms of
mental illness in adults, particularly schizophre-
nia. The idea that autism was the earliest form of
high-functioning autistic disorder Children who schizophrenia reflected three factors: an awareness
are autistic by definition yet are able to communi- of the severity of both conditions, an extremely
cate, do not have overly severe social impairments, broad view of schizophrenia among the scientists
and have only minor deficits. Their IQ ratings are of the time, and Kanner’s use of the word “autism,”
near normal, normal, or even high. which had previously been used to describe the
self-centered quality of thinking in schizophrenia
rather than a lack of ability to relate socially.
history of autism Most experts believe that before It took many years before researchers and clini-
the discovery of the pattern of symptoms now cians could be sure that autism and schizophrenia
known as autism, most people with the syndrome were indeed different conditions. Some early clini-
were considered either to be mentally retarded cians thought that perhaps autism could be caused
or insane. There have not been many historical by negative experience. Doctors had noticed that
descriptions that suggest autism. Of the few that parents treated their autistic children without the
exist, one of the best is of the WILD BOY OF AVEY- warmth and affection normally observed between
RON, a youngster found in the 19th century and parent and child. At the time, doctors influenced
named Victor, who had grown up without human by psychiatrist Sigmund Freud believed that if
contact in the forest. certain basic psychological bonds between parent
Thereafter, medical history was largely silent and child fail to form, the child will fail to prog-
on the symptoms of what is now known as autism ress—and therefore, the idea of the cold “refrig-
until the 20th century. In 1944 child psychiatrist eration mother” as the cause of autism was born.
Leo KANNER, M.D., studied 11 children who had This Freudian theory of autism remained popular
apparently had a lack of interest in other people yet through the 1950s and into the 1960s. What Freud-
who were extremely interested in unusual aspects ians failed to notice, however, is that the parents’
of inanimate objects. Kanner observed that these stilted interaction with the child was actually the
94 Hoffman, Dustin

result of the child’s autistic behavior. They also child, who is sitting or lying face to face with the
failed to note that autism is an extreme instance of parent. The parent should remain calm and offer
a genetically inherited personality trait present to a comfort until the child stops resisting. This hold-
milder extent in these parents. ing period may last just a few minutes up to hours
Unfortunately, based upon these flawed theories at a time. A few very unfortunate outcomes have
of the basis of autism, some children were removed occurred when holding therapy was carried out in
from their parents’ home and placed in foster care an extreme form. Some children have been injured
to see if they would recover. and even smothered when they resisted the con-
The syndrome identified by Kanner has been finement of holding therapy.
broadened somewhat since he first published his
paper. Kanner reported a rate of occurrence of
one in 10,000; more modern estimates suggest the hyperactivity Constant and excessive movement
rate is closer to 15 in 10,000. Kanner first identi- and activity. A child with hyperactivity may show
fied people who were clearly not mentally retarded restless movements. He or she may not be able to
(since this was the unexplained group of people at stop an action when directed to or to sit still for
the time). Since then, doctors have realized that any period of time. Hyperactivity often occurs with
some mentally retarded people have autistic symp- inattentiveness and impulsivity. An affected child
toms whereas others do not; experts now believe might have trouble sitting still, fidgets excessively,
the conditions overlap. This explains some of the and moves about excessively even during sleep.
difference in the reported rates of occurrence. Onset occurs before the age of seven years. Behav-
See also AUTISM, EARLY ONSET. iors are chronic (present throughout the child’s
life), present throughout the child’s day in many
different settings, and are not due to other factors
Hoffman, Dustin Gifted actor who portrayed an such as anxiety or depression.
autistic man in the film Rain Man (1988). Although In older children, symptoms of hyperactivity
his performance was widely praised, the character may be more subtle, displaying themselves in more
illustrates just one point on a wide continuum of subdued restlessness or fidgeting. Accompanying
autistic personalities and skill levels. Some, but not impulsivity may appear as a tendency to interrupt
all, individuals with autism excel in an area of inter- in class, problems waiting for one’s turn, and other
est (such as music) the way Hoffman’s character behaviors that often result in conflict with peers
did with math. Mark Rimland, son of autism expert and family members.
Bernard Rimland, was one of the autistic individu-
als with whom Hoffman worked when preparing
for the part. hyperlexia A complex condition that includes an
ability to read words at a far earlier developmental
stage than is typical or earlier than one’s abilities in
holding therapy A treatment for AUTISTIC DISOR- other areas, such as talking. It is usually accompa-
DER in which the parent tries to make contact with nied by an intense fascination with symbols such as
the child by forced holding, a method devised by letters and numbers. It also usually involves a sig-
Columbia University psychiatrist Marth Welch. nificant difficulty in understanding verbal language
This method received widespread attention dur- and may present with problems with social skills,
ing the late 1970s when Dr. Welch first developed including difficulty interacting appropriately with
her theory. The method has some proponents peers and family members.
who claim positive results but experts disagree In addition, some children with hyperlexia may
with its intrusive nature and lack of evidence for also develop expressive language skills in unusual
its effectiveness. ways, echoing what they hear without understand-
During holding therapy, the parent tries to estab- ing the meaning, and failing to develop the ability
lish eye contact and share feelings verbally with the to initiate conversations. They often exhibit a pow-
hyperlexia 95

erful need to maintain routines and ritualistic pat- first step. Psychological tests that emphasize visual
terns of behavior, and have trouble with transitions processes rather than verbal skills can also help
and handling external sensory stimuli. identify hyperlexia. Hearing, neurological, psychi-
Children with hyperlexia often display very atric, blood chemistry, and genetic evaluations can
strong auditory and visual memory, but may have be performed to rule out other disorders but are not
trouble understanding and reasoning in abstract needed to identify hyperlexia.
rather than concrete and literal terms. Often, their
approach to listening to others may be highly selec- Treatment Options and Outlook
tive, and they can appear to be deaf. The future of a hyperlexic child depends on devel-
Hyperlexia may share similar characteristics with oping language expression and comprehension
autism, behavior disorders, language disorders, skills. Intensive speech and language therapy and
emotional disorders, ATTENTION DEFICIT DISORDER, early intervention programs can help. The child’s
hearing impairment, giftedness or, paradoxically, reading skills should be used as a primary means of
MENTAL RETARDATION. developing language.
It is also important to teach the child appropriate
Symptoms and Diagnostic Path social skills by providing opportunities for the child
To develop effective teaching strategies, it is impor- to interact with others whose behavior is more
tant to differentiate hyperlexia from other disorders. socially appropriate. Parents, teachers, and other
A thorough assessment by a speech and language professionals should work together to develop pro-
pathologist who is familiar with hyperlexia is the grams for each child.
I
idiot-savant See AUTISTIC SAVANT. odic booster shots for life are required to maintain
immunity.
Immunization is not straightforward, however.
imipramine (Tofranil) A tricyclic antidepressant As infectious diseases continue to decline, some
that has been used to treat people with autism, but people have become less interested in the conse-
which subsequently was found not to be especially quences of preventable illnesses such as diphtheria
helpful. and tetanus. Instead, they have become increasingly
concerned about the risks associated with the vac-
Side Effects cines themselves. Some vaccines are perceived by
Side effects include dry mouth, blurred vision, con- the public as carrying a risk, especially the pertussis
stipation, fatigue, electrocardiogram changes, and part of the DPT (diphtheria-pertussis-tetanus) vac-
weight gain. cine, which had been linked to seizures and other
serious side effects. In response to these concerns,
a safer acellular version of the pertussis vaccine is
immunization A method of producing immunity now in use.
to disease via vaccination. When a naturally occur- Other concerns focused on the preservative thi-
ring disease-causing germ infects the body, the merosal, a mercury compound, which used to be
immune system produces special proteins called included in many vaccinations and which some
antibodies to destroy the invader. If the same germ parents believe has been linked to autism. A review
is encountered a second time, the immune system by the Food and Drug Administration found no
recognizes it and produces antibodies much more evidence of harm caused by doses of thimerosal
quickly, killing the germ before the disease can in vaccines, except for minor local reactions. Nev-
develop. That is why a person who had a disease ertheless, in July 1999 the Public Health Service
such as measles as a child is immune from the dis- agencies, the American Academy of Pediatrics, and
ease if ever exposed again. vaccine manufacturers agreed that thimerosal lev-
Vaccines work by the same principle. Vaccines els in vaccines should be reduced or eliminated as
are made from tiny amounts of bacteria or viruses a precautionary measure. Today almost all vaccines
(antigens) that are weakened or killed so that they for children are thimerosal free.
are harmless to the body. But when introduced Medical experts argue that a vaccine is not
into the body, the immune system still makes licensed unless it is considered safe and its benefits
antibodies against the vaccine’s altered germs—so far outweigh perceived risks. For a vaccine to be
when the body later encounters the actual invad- included on the annual Recommended Childhood
ing germ, it can fight off the disease. This is why a Immunization Schedule for the United States, it
child who received a measles vaccine also would must first be approved by the Advisory Commit-
be immune to the disease if exposed later in life. tee on Immunization Practices from the Centers
A few vaccines produce immunity from a disease for Disease Control and Prevention, the American
with just one dose, but most require two or more Academy of Pediatrics and the American Academy
doses. For some vaccines (such as tetanus), peri- of Family Physicians. Scientists and physicians in

96
Individualized Education Program 97

these organizations carefully weigh the risks and calling an impartial hearing to defend the district’s
benefits of newly developed vaccines, monitor the own evaluation.
safety and effectiveness of existing vaccines, and
track cases of vaccine-preventable diseases.
The topic of vaccine safety became prominent independent living skills The ability to indepen-
during the mid 1970s as lawsuits were filed on dently take care of personal needs and daily life
behalf of those presumably injured by the DPT vac- tasks, such as dressing, preparing meals, eating,
cine. In order to reduce liability and respond to pub- homemaking, maintaining personal hygiene (such
lic health concerns, Congress passed the National as dressing, bathing, and toileting), communica-
Childhood Vaccine Injury Act (NCVIA) in 1986. tion, travel, and safety in the home.
Designed for citizens injured or killed by vaccines,
this system provided a no-fault compensation alter-
native to suing vaccine manufacturers and provid- Individualized Education Program (IEP) A writ-
ers. The act also created safety provisions to help ten educational prescription developed for each
educate the public about vaccine benefits and risks child who qualifies for SPECIAL EDUCATION, describ-
and required doctors to report adverse events after ing what special education the child needs and what
vaccination as well as keep records on vaccines the school district will do to address those needs.
administered and health problems that occurred School districts are required by law to develop these
following vaccination. The act also created incen- programs (sometimes called an Individualized Edu-
tives for the production of safer vaccines. cation Plan) in cooperation with parents. An IEP
must be created for each exceptional child, accord-
ing to the INDIVIDUALS WITH DISABILITIES EDUCATION
independent education evaluation (IEE) An evalu- ACT (IDEA).
ation of a student conducted by a qualified examiner An IEP is prepared at a team meeting attended
who does not work for the school district. According by the parents, the child, the child’s teacher, a
to Public Law 94-142 (amended to the INDIVIDUALS school administrator, educational specialists, other
WITH DISABILITIES EDUCATION ACT), parents have the professionals who are providing services to the
right to have their child independently tested either child (such as a speech therapist or an occupa-
to seek a more comprehensive assessment than is tional therapist), and a representative of the public
sometimes provided in a school setting or because agency that oversees special education. Any sup-
they fear a school-based evaluation is biased or port the child needs, such as a trained one-on-one
inaccurate. aide or assistive technology, needs to be discussed
An IEE would include the same elements as a and written into the IEP.
school-mandated evaluation, focusing on measures An IEP must contain
of aptitude and achievement. Parents may obtain
an evaluation at school district expense if they • the child’s present levels of educational perfor-
disagree with the evaluation arranged for by the mance
school district. • annual and short-term educational goals
If the parent wants the school district to pay for • the specific special education program and
the tests, the district may ask (but not require) the related services that will be provided
parents to explain the reason why they object to the
• the extent to which the child will participate in
district’s evaluation. The school district also may ask
regular education programs with non-handi-
for an impartial hearing to show that its evaluation
capped children
is appropriate. If the impartial hearing officer finds
that the district evaluation is appropriate, parents • a statement of when services will begin and how
still have the right to obtain an IEE—but the district long they will last
does not have to pay for it. The school district may • provisions for evaluating the effectiveness of the
not unreasonably delay either providing the test or program and the student’s performance
98 Individualized Education Program Committee

• statement of transition services for students 14 • projected start and end dates of services
years of age or older • name of case manager
• steps needed for smooth transition from early
The team meets at least once a year, sometimes
intervention program to preschool program
arranged to fall in the child’s birthday month, to
review the child’s educational progress and needs,
See also EARLY INTERVENTION PROGRAM.
and to develop goals and objectives for the coming
year. If parents decide their child needs a change in
the program, they have the right to ask the school
to call an IEP meeting at any time. Individualized Habilitation Program (IHP) A writ-
ten statement that defines the goals for a develop-
mentally disabled person (such as a person with
Individualized Education Program Committee A AUTISTIC DISORDER) along with a description of how

group of people who meet to create an INDIVIDUAL- to attain those goals. The program must be approved
IZED EDUCATION PROGRAM (IEP) for a child who has by the developmentally disabled person or a guard-
been identified as learning disabled by a multidisci- ian. The IHP is very much like an INDIVIDUALIZED
plinary team. EDUCATION PROGRAM (IEP), individual program plan
The committee should include a representative (IPP), and individual work plan (IWP).
of the public school, the student’s teacher, one
or both parents, the student (when appropriate),
and any other individuals deemed relevant by the Individuals with Disabilities Education Act (IDEA),
school or parents such as an educational PSYCHOLO- The A federally mandated program that provides
GIST, speech teacher, legal expert, or advisor. children with disabilities (including autism) access
to a free appropriate public education and aims
to improve the educational experience of such
Individualized Family Service Program (IFSP) A children.
written plan developed with teachers and parents Typically, children are placed in public schools
to outline special services to be provided to chil- and the school district pays for all necessary ser-
dren of preschool age (often prior to or up to age vices. These will include, as needed, services by
three). a SPEECH-LANGUAGE PATHOLOGIST, OCCUPATIONAL
As stated in Public Law 99-457, Part H, families THERAPIST, school PSYCHOLOGIST, SOCIAL WORKER,
play a crucial part in a child’s development from school nurse, or aide.
birth to age two; therefore, the individualized fam- However, each state has its own guidelines
ily services program is written to address the special regarding how IDEA is applied, which means there
needs of the child and the family. may be substantial differences in services from state
According to the INDIVIDUALS WITH DISABILITIES to state, and often from school district to school
EDUCATION ACT (IDEA), an IFSP must include district. Although many school districts are knowl-
edgeable about autism, recognizing that different
• present levels of the child’s development (cog- strategies work for different children and providing
nitive, physical, language/speech, psychosocial, effective support for both mainstream teachers and
and self-help) special education classrooms, some are not.
Sometimes, school administrators and parents
• family resources and concerns regarding the
disagree about what is an appropriate education
child’s development
for a particular child. School districts must furnish
• expected outcomes for the family and child includ- information about the parents’ rights and responsi-
ing criteria, timelines, and assessment procedures bilities under the law.
• specific intervention services necessary to meet IDEA was first enacted as the EDUCATION FOR
the needs of the family and child ALL HANDICAPPED CHILDREN ACT OF 1975 (Public
inflammation 99

Law 94-142), renamed in 1990 (Public Law 101- Once a child’s IEP is developed, a meeting is
476), and amended (Public Law 102-119) in 1991. scheduled once a year to review the child’s prog-
Under the IDEA, money is given to local school ress and to make any alterations to reflect changing
systems to educate children up to age 22; local needs. If a child is under three years of age and has
schools are required to comply with the act as a special needs, he or she should be eligible for an
condition of receiving funds. early intervention program; this program is avail-
Prior to IDEA’s implementation in 1975, approx- able in every state. Each state decides which agency
imately one million children with disabilities were will be the lead agency in the early intervention
shut out of schools and hundreds of thousands program. The early intervention services are pro-
more were denied appropriate services. Since IDEA vided by workers qualified to care for toddlers with
was enacted, many of these children are learning disabilities and are usually in the child’s home or
and achieving at levels previously thought impossi- a place familiar to the child. The services provided
ble—graduating from high school, going to college, are written into an INDIVIDUALIZED FAMILY SERVICE
and entering the workforce as productive citizens PLAN (IFSP) that is reviewed at least once every six
in unprecedented numbers. months. The plan will describe services that will be
Previously, 90 percent of children with devel- provided to the child but will also describe services
opmental disabilities were housed in state institu- for parents to help them in daily activities with their
tions; today three times as many young people with child and for siblings to help them adjust to having
disabilities are enrolled in colleges or universities, a brother or sister with disabilities.
and twice as many of today’s 20-year-olds with dis- Most students who fall under the IDEA are
abilities are working. served within their own public school system,
The IDEA provides that children covered by the although in some cases students may attend a pri-
act have access to a free and appropriate public vate educational institution with the school district
education. By law, the public schools must prepare assuming the cost.
and carry out a set of instruction goals, or specific Parents who are having a serious disagreement
skills, for every child in a special education pro- with school district officials may need the advice of
gram. The list of skills is known as the child’s INDI- an advocate or an attorney knowledgeable in spe-
VIDUALIZED EDUCATION PROGRAM (IEP). The IEP is cial education. Some organizations and some law
an agreement between the school and the family firms offer free legal advice in this area. If parents
on the child’s goals. When a child’s IEP is devel- cannot reach an agreement with the school district,
oped, the parents are asked to attend the meeting. they may file for due process (an impartial hearing
In general, students receiving services under the provided to parents who disagree with their child’s
IDEA will take part in regular educational programs placement). If, through due process or mediation
to some degree, and also receive special education parents reach an agreement but find the school dis-
services as described in their IEP. Parents have the trict is still not fulfilling its end, parents may file a
right to receive a copy of the evaluation report and compliance complaint with their state’s department
to receive a copy of the paperwork about the child’s of education.
eligibility for special education.
There will be several people at this meeting,
including a special education teacher, a represen- infantile autism, residual state A category in the
tative of the public schools who is knowledgeable Diagnostic and Statistical Manual that describes indi-
about the program, other individuals invited by the viduals who once met the criteria for autism but
school or by the parents (who may want to bring a no longer do so, but who may retain some residual
relative, a child care provider, an advocate or law- traits.
yer, or a supportive close friend who knows the
child well). Parents play an important part in creat-
ing the program, as they know the child and his or inflammation Brain inflammation may play
her needs best. an important role in the development of autism,
100 inhibition

according to a study by researchers at Johns Hop- companies to place restrictions on coverage. If a


kins University. Inflammation occurs when the state does not specifically mention autism as one
immune system kicks into gear, triggering a rush of of the conditions covered by insurance, companies
cells into the area, producing swelling. may deny coverage for treatment. About 90 to 95
In the study, researchers who analyzed frozen percent of insurance companies refuse outright to
brain tissue from 11 deceased autism patients aged cover treatment for pervasive developmental disor-
five to 44 discovered that inflammation is clearly ders, although most will cover the cost of the initial
a feature of the disease in certain brain areas. The diagnosis. Because there is no recognized cure for
autistic brains experienced active inflammation in autism and the other AUTISM SPECTRUM DISORDERS,
various regions, but especially in the cerebellum. treatment may not be covered, although medica-
There also was ongoing inflammation in the fluid tions or treatments prescribed to ease symptoms
surrounding the brain and spinal cord, along with might be covered. Sometimes insurance plans will
cytokines—powerful chemical messengers secreted not even cover any kind of psychological testing to
by the immune system that lead to inflammation. rule in or rule out an autistic spectrum disorder,
Scientists hope their findings will open up new because they reason that this kind of screening is
possibilities for understanding the dynamic changes usually available through the school system.
that occur, leading to new treatments and specific Moreover, neurobiological disorders such as
diagnostic tests that screen for inflammation in the ASDs are often difficult to cover, because they are
spinal fluid of autistic patients. There is currently medically based illnesses with psychiatric symp-
no blood or lab test to check for the disease. toms. The insurer and health care providers may
argue with each other about what kind of care is
needed, who should deliver it, and who will pay
inhibition The ability to defer responses to unim- for it.
portant distractions. The ability to control inap- Insurance companies that do cover these condi-
propriate impulsive responses or strategies while tions may do so in a substandard way. For example,
developing more effective or appropriate ones is they may cover only short-term therapy programs
essential to success in both academic and social or refuse to pay for necessary behavioral therapy,
settings. speech therapy, occupational therapy, or physical
therapy. They may have no qualified practitioners
in the plan but refuse to make outside referrals, or,
insomnia and Asperger’s syndrome Children as already mentioned, they may call PDD-NOS or
with ASPERGER’S SYNDROME (AS) have difficulty atypical PDD a mental health issue rather than a
falling and staying asleep. Research suggests that medical problem and limit coverage.
neuropsychiatric problems inherent with AS pre- In the United States, however, both case law and
dispose children both to insomnia and to anxiety state legislation may support parents who say that
and mood disorders. Therefore, a careful assess- treatment for autism and related disorders should
ment of sleep quality should be an integral part of be covered by their health insurance. For example,
the treatment plan in these individuals. in 1988 Kunin v. Benefit Trust Life Insurance Co. (even-
tually affirmed by the U.S. Court of Appeals for the
Ninth Circuit) established that because autism has
insurance and autism Although federal law deals organic causes, it is not a mental illness and so can-
with the issues of insurance coverage for people with not be used as a basis for denying or limiting insur-
autism and other PERVASIVE DEVELOPMENTAL DISOR- ance benefits. Cases in some states have affirmed
DERS (PDD), these laws may be vague and open to this conclusion in relation to other neurological
interpretation by the insurance industry. One of the disorders.
major problems with these laws is that according to One piece of information parents should research
the guidelines of the DSM-IV-TR, autism is classi- is how the insurance company treats acquired
fied as a mental condition, which allows insurance nervous-system disorders, such as stroke, brain
intelligence quotient 101

tumors, or traumatic brain injuries. If the insurance ity and to recommend appropriate remediation or
covers long-term care for these conditions, most treatment.
states mandate equal benefits for patients with bio- For individuals with autism, however, standard
logically based brain disorders. IQ tests such as the Stanford-Binet and Wechsler are
Twelve states—Arkansas, Colorado, Connecti- unreliable. These tests are designed to measure the
cut, Indiana, Maine, Maryland, Minnesota, New intelligence of a person with typical language and
Hampshire, North Carolina, Rhode Island, Texas, forms of experience. While children with autism
and Vermont—passed their own, more restrictive may have great perception strengths in some areas
mental health parity laws, which supersede the the tests will not measure, they most likely have
federal regulations. Eleven other states have par- deficits in other areas the tests do cover. This type
ity laws that are equal to the federal act, and oth- of uneven development is quite typical of children
ers have less restrictive parity laws. Of the 12 with with autism, with some superior skills and others
tighter restrictions, all of the laws are written in that reveal significant delay.
ways that should require coverage for PDDs. Colo- IQ scores generally have a mean of 100, and
rado, Connecticut, Maine, New Hampshire, Rhode range in classification from mentally retarded at the
Island, and Texas specifically require coverage for low end to very superior at the high end.
autistic spectrum disorders and other “biologically The concept of intelligence has existed for cen-
based” mental illnesses. For parents and patients turies, but it was not until this century that scien-
living in these states, this is a step in the right direc- tists began testing it—and debating whether or not
tion, although it remains to be seen how these laws they could do so accurately. Intelligence testing
will be enforced and what steps some insurers may was developed in the late 19th century as France’s
take to evade responsibility. Alfred Binet began work on tests of individual dif-
ferences, which led him to study “subnormal” chil-
dren in Paris schools. Several years later, Binet and
intelligence The level of intellectual functioning Paris physician Theodore Simon recommended that
and capacity of an individual; the ability to learn an accurate diagnosis of intelligence be established
or understand. Some experts have suggested that for schoolchildren. The result was the Simon-Binet
intelligence is not a single phenomenon, but that test of intelligence, which first appeared in 1905
there exist “multiple intelligences,” a number of and was revised in 1908.
discrete “intelligences,” and that an individual will Binet thought of the test as a tool for selecting
possess a unique pattern of strengths and abilities students who needed special remedial teaching, not
across this range of intellectual functions. as a measure of absolute innate ability. The test was
Intelligence is measured by intelligence tests, translated into English for the American audience in
which provide an “INTELLIGENCE QUOTIENT” (IQ), 1908 by Henry H. Goddard and revised several times,
a measure of intellectual development that is the but it was not until 1916 that the test was standard-
ratio of a child’s mental age to his or her chrono- ized with the revision by Lewis M. Terman in the
logical age, multiplied by 100. form we still know as the Stanford-Binet test.
In 1911, William Stern developed the idea of
relating mental age to chronological age with his
intelligence quotient (IQ) A measurement of formulation of Intelligence Quotient. This simple
intelligence based on performance on intelligence formulation of IQ = MA/CA × 100, where MA stands
tests. Use of intelligence testing remains somewhat for mental age and CA stands for chronological age,
controversial because of the limitations of testing gave a number to stand for the performance of the
for specific abilities and knowledge and because of child. This allowed the IQ to be manipulated within
possible cultural bias in the design of tests. None- statistical tests and to be used for prediction of later
theless, IQ tests are used in educational and psy- performance.
chological settings in combination with other types During World War I, the first massive use of psy-
of tests to evaluate an individual’s mental capac- chological tests of intelligence was begun with the
102 interim alternative educational setting

testing of military recruits. Hundreds of psychologists tee and allows the student to continue to partici-
and graduate students in psychology were recruited pate in general educational programs and receive
to administer the tests. After the war, critics were special services as outlined on the IEP. If suspen-
outraged to find that the Army test suggested that sion is necessary for a longer period, an IAES may
southern and eastern Europeans were inferior to be put into place for up to 45 days.
northern Europeans, and that blacks were inferior
to whites. Some believe it was these test results that
prompted restrictive immigration policies in Amer- intermediate care facility for the mentally retarded
ica in 1924 and fanned the flames of racial prejudice (ICR/MR) A facility designed to nurture residents
against blacks and other minorities. with mental retardation and other developmental
David Wechsler developed his tests in response disabilities, including autism, and to encourage
to many of the criticisms of the Binet tests. In 1939, them to be as independent as possible so that they
he introduced his Wechsler Adult Intelligence Scale can lead busy, active, and full lives. These facilities
(WAIS), the first of a series of tests still much in use. must provide 24-hour services, including a wide
Since that time there have been many intelligence range of programs geared toward enhancing resi-
tests produced, some specifically aimed at reducing dents’ maximum independent living capabilities
cultural and background effects on pencil-and-paper and their ultimate return to a less restrictive liv-
tests. In 1969, the debate about the inherent versus ing arrangement. Each facility has a unique atmo-
the environmental bases of intelligence exploded sphere for residents requiring different levels of
with an article by psychologist Arthur Jensen in care.
which he argued that these are inherent racial dif- ICFs are an optional Medicaid benefit and are
ferences in intelligence. The debate continued into licensed and certified to operate under federal Title
the last decade of the 20th century in response to XIX regulations of the Social Security Act. The Social
further controversial work on intelligence and class Security Act created this benefit to fund “institu-
structure in American life. In recent years, influ- tions” of four or more beds for people with mental
ential books by psychologist Howard Gardner and retardation and specifies that these institutions must
others have supported multiple intelligences over a provide active treatment. Currently, all 50 states
single global factor in intelligence. have at least one ICF/MR facility. The program
When a child with autism is tested in different serves about 129,000 people with mental retarda-
skill areas, typically each score reflects a completely tion and other related conditions, all of whom must
different IQ, but none of these scores can accurately qualify for Medicaid assistance financially.
predict an autistic person’s potential. IQ tests can-
not reveal what a child with autism can do, but
they may highlight areas of strength or weakness. irlen lenses A highly controversial treatment
for autism not supported by research involving a
special type of colored prism lens that supposedly
interim alternative educational setting (IAES) treats autism, originally developed to treat dyslexia
Most students with disabilities are disciplined as and other learning disabilities.
any other student would be, but in certain extraor- Many autistic individuals have difficulty paying
dinary circumstances, a suspension longer than 10 attention to their visual environment or perceiving
days would require education in an IAES, as stu- themselves in relation to their surroundings. These
dents with disabilities must not be suspended for problems have been associated with a short atten-
longer than 10 days. School officials may place stu- tion span, easy distractibility, excessive eye move-
dents with disabilities in an alternative educational ments, difficulty scanning or tracking movements,
setting with or without parent consent. The interim inability to catch a ball, extra cautiousness when
alternative educational setting is determined by the walking up or down stairs, bumping into furniture,
INDIVIDUALIZED EDUCATION PROGRAM (IEP) commit- and even TOE WALKING.
K
Kanner, Leo (1894–1981) Austrian child psychi- teristics prompted Kanner to describe autism as a
atrist who was the first person to describe the con- separate disorder: early onset, lack of hallucina-
dition now known as autism. Born in Klekotow, tions, and family histories. Almost all of the chil-
Austria, Kanner received his M.D. from the Univer- dren showed signs of the disorder before the age
sity of Berlin in 1921. He emigrated to the United of three; children with schizophrenia, on the other
States in 1924 to become assistant physician at a hand, did not have as many problems at an early
state hospital in South Dakota. Six years later, he age. In fact, most symptoms of childhood schizo-
was selected to develop the first child psychiatry phrenia do not appear until age 10. In addition,
service in a pediatric hospital, at Johns Hopkins these children had neither hallucinations nor delu-
Hospital in Baltimore, where he became associate sions, which are classic signs of schizophrenia. They
professor of psychiatry in 1939. did exhibit bizarre behaviors and unusual percep-
Kanner was the first physician in the United tions. The families of these children showed much
States to be identified as a child psychiatrist, and less evidence of psychosis than did families of chil-
his first textbook, Child Psychiatry (1935), was the dren with schizophrenia.
first English language textbook that focused on the Social isolation was the most important char-
psychiatric problems of children. acteristic of the children whom Kanner studied.
In 1938, Kanner studied 11 children who Unlike children with childhood schizophrenia, who
apparently had a lack of interest in other people— withdrew from preexisting relationships, children
yet they were extremely interested in unusual with autism never formed these relationships in the
aspects of inanimate objects. His groundbreaking first place. Kanner wrote in 1943 that “there is from
1943 paper Autistic Disturbances of Affective Contact, the start an extreme autistic aloneness that, when-
together with the work of Hans ASPERGER, forms ever possible, disregards, ignores, shuts out, any-
the basis of the modern study of autism. In this thing that comes to the child from the outside.”
paper, Kanner focused on three defining charac- Kanner also described the language problems
teristics of autism that are still used today: social in these autistic children, including ECHOLALIA
isolation, language impairments, and insistence on (parrot-like repetition of a word or sentence just
sameness. spoken by another person often without com-
Before Kanner noticed and recorded a pattern of prehension), extreme literalness, and switching
symptoms, such children would have been classified pronouns. He believed these unusual speech pat-
as emotionally disturbed or mentally retarded. Kan- terns separated autistic children from those with
ner observed that these children often demonstrated schizophrenia.
capabilities that showed that they were not merely His final defining characteristic of autism was
slow learners, yet they did not fit the patterns of emo- insistence on sameness. The 11 children he studied
tionally disturbed children. As a result, he invented a were compulsive about following routines; envi-
new category, which he called early infantile autism ronmental change—no matter how minor—caused
(then, also called Kanner’s syndrome). them great distress. Their preference for consis-
These 11 children resembled those with child- tency prompted the children to do whatever they
hood schizophrenia, but several of their charac- could to avoid anything different or new.

103
104 kinesthetic

Misconceptions as the earliest form of schizophrenia. Hans Asperger


Although Kanner’s description of autism was accu- made the same discoveries at the same time, inde-
rate, several of his ideas have since been proven pendently of Kanner, but the patients he identified
incorrect. His biggest mistake was the idea that all were able to speak; this is why the term ASPERG-
autism was an emotional disorder caused by inad- ER’S SYNDROME is often used to label autistic people
equate parenting, especially from the mother. who can speak and whose early language develop-
Kanner observed a range of similarities among the ment was intact.
families of the patients he studied, including perfec- Long before Kanner incorporated the term
tionism, obsessiveness, and lack of humor. Although “autism” into his label, the word already had a
his sample was small, he suggested that the highly meaning: “escape from reality” (coined by Eugen
organized professional parents of his subjects might Bleuler in 1912, who had already invented the term
be emotionally aloof and that this aloofness could “schizophrenia”). Kanner used the term because he
cause autism. Further biological research on the believed the children gave the impression that they
topic has concretely proved this theory to be false. were trying, or were actually trying, to escape from
Kanner also believed that children with autism reality.
are of average or above average intelligence and He became director of child psychiatry at Johns
have the potential for normal language develop- Hopkins in 1957, and retired two years later. He
ment. He reached this conclusion because his small remained active until his death at age 87.
sample of autistic children indeed functioned at
a much higher intellectual level than the aver-
age autistic child, with an IQ well over 70; all but kinesthetic One of the body’s senses that refers
one child had EXPRESSIVE LANGUAGE. Subsequent to the acquisition of information from body move-
researchers since have found that the average ments. Like other forms of learning, kinesthetic
autistic child has an IQ of about 50 and that at least learning involves the input of stimuli to specific
40 percent do not develop any expressive language channels in the brain, in this case through the
at all. More recent research suggests that the aver- motion of joints and muscles. Kinesthetic learning
age IQ is actually higher and a greater percent are is best understood as the process of making move-
capable of developing expressive language, perhaps ments automatic through practice and repetition,
as a result of better intervention. Kanner also failed such as throwing a baseball or driving a car.
to note that his subject pool included only fami- For individuals with strengths in kinesthetic
lies with extremely high intelligence and educa- areas, learning in basic skills might be supple-
tional levels. Recent studies have determined the mented with a kinesthetic approach. Walking or
prevalence of autism is proportionally distributed dancing movements, for example, might be used
throughout educational levels, social classes, races, to represent concepts or steps in a sequence to aid
and religious groups. recall.
Kanner also believed that autism is more likely
to occur in firstborn or only children. Although this
idea was firmly entrenched for years, recent stud- kinesthetic method Any situation in which learn-
ies do not suggest there are more firstborn or only ing takes place through the sense of movement.
children with autism.
Although Kanner believed that autism was dif-
ferent from schizophrenia, he also described autism Klonopin See CLONAZEPAM.
L
Landau-Kleffner syndrome (LKS) A rare childhood The disorder is difficult to diagnose and may be
neurological disorder (also known as acquired epi- confused with autism, PERVASIVE DEVELOPMENTAL
leptiform aphasia) characterized by normal devel- DISORDER, hearing loss, learning disability, audi-
opment followed by the appearance of autistic-like tory/verbal processing disorder, attention deficit
behaviors and the sudden or gradual development hyperactivity disorder, MENTAL RETARDATION, child-
of the inability to understand or express language hood schizophrenia, or emotional/behavioral prob-
(APHASIA). This syndrome affects the parts of the lems. Between 70 and 80 percent of children with
brain that control comprehension and speech, usu- this syndrome have SEIZURES, but the presence of
ally appearing between the ages of five and seven seizures is not a requirement for diagnosis.
years. LKS was first described in 1957 by Dr. W. M. The sudden appearance of speech problems is
Landau and Dr. F. R. Kleffner. the first indication of LKS. The diagnosis can be
While in some cases LKS is believed to result confirmed by an EEG, which will show signs of
from a lack of full development of various networks brain malfunction involving both cerebral hemi-
within the brain, other cases seem to be triggered spheres, although activity will be more prominent
by a viral infection. There have been no reports of in the dominant cerebral hemisphere dealing with
children with a family history of this syndrome. language function.
Boys are more than twice as likely to be affected
as girls. Treatment Options and Outlook
Treatment usually consists of anticonvulsants to
Symptoms and Diagnostic Path control the epileptic seizures common in this con-
After the normal development of language for the dition. Early SPEECH THERAPY (including sign lan-
first few years in childhood, affected individuals guage) can be very effective in easing the language
suddenly begin to have trouble understanding lan- problems. Corticosteroids also have been shown to
guage—even recognizing their own names. They improve language abilities in some children. Eventu-
may have trouble understanding environmental ally, these children will most likely need educational
sounds, such as a doorbell ringing or a baby cry- support in a SPECIAL EDUCATION classroom because of
ing, and they begin to have trouble speaking; some the significant language and speech problems.
become unable to speak at all. A more controversial treatment involves a sur-
In addition to the aphasia, these children have gical technique called multiple subpial transection,
a number of autistic-like behaviors, such as social in which the pathways of abnormal electrical brain
withdrawal, insensitivity to pain, avoidance of activity are severed.
touch, and bizarre repetitive or inappropriate play. The prognosis is varied; some children may have
There also may be a range of behavioral problems, a permanent severe language disorder, but most oth-
such as temper tantrums, aggressiveness, HYPER- ers may regain much of their language ability over
ACTIVITY, and ATTENTION problems. They may have months or years, usually by adolescence. In still oth-
trouble recognizing friends and family or even com- ers, symptoms may wax and wane. Typically, the
mon objects, and they may lose control of bladder later the condition develops, the better the progno-
and bowels. sis. Seizures generally disappear by adulthood.

105
106 language

language An organized communication system an attack against the “foreigner,” resulting in food
of symbols (verbal, gestured, or pictoral) that rep- allergies and sensitivities. The release of antibodies
resents objects, actions, feelings, processes, and triggers inflammatory reactions when the foods are
relationships. Every language has rules that govern eaten again. The chronic inflammation lowers IgA
how it is used. levels. Sufficient levels of IgA are needed to pro-
tect the intestinal tract from clostridia and yeast.
The decreasing IgA levels allow for even further
language delay A lag in the development of com- microbe proliferation in the intestinal tract. Vita-
munication skills, in which these skills progress min and mineral deficiencies are also found due to
more slowly than would be expected based on age, the leaky gut problem. Research implicates altered
environment, or specific deprivation or disease. permeability of the intestinal wall in a large num-
Children with autism often have language delays, ber of illnesses.
which typically means that language is developing Many factors can increase the permeability
in the right sequence, but at a slower-than-normal of the intestinal wall, including alcohol and caf-
rate. They also may experience qualitative language feine; antibiotic use; medications such as NSAIDs
impairments. (nonsteroidal anti-inflammatory drugs), antacids,
or aspirin; a high-carbohydrate diet; environmen-
tal contaminants; food additives; lack of digestive
language disabilities A range of deficits in linguis- enzymes; foods and beverages contaminated by
tics, whether related to written or oral expressive parasites such as Giardia lamblia, cryptosporidium,
language, or to auditory processing (the processing Blastocystis hominis, and others, or by bacteria such as
of sounds and meaning). Helicobacter pylori, klebsiella, citrobacter, and pseudo-
monas; and chronic stress.

leaky gut syndrome An increase in intestinal per- Symptoms and Diagnostic Path
meability that allows improperly digested peptides The most obvious problems resulting from a leaky
to enter the bloodstream and cross the blood-brain gut are probably digestive symptoms such as bloating,
barrier, where they may mimic neurotransmit- flatulence, and abdominal discomfort; other prob-
ters and scramble sensory input. Some experts lems include nutritional deficiencies and increased
also believe that autism is related to leaky gut syn- absorption of toxins.
drome. In one study, altered intestinal permeability
was found in 43 percent of autistic patients, but not Treatment Options and Outlook
found in any of the controls. Corticosteroids and prescription antibiotics may help
A healthy gastrointestinal tract, with its tightly acute episodes of pain, bleeding, or severe inflamma-
packed cells lining the intestinal wall, is designed tion. For a more permanent treatment, it is impor-
to absorb only small molecules needed by the body tant to reverse the leaky gut syndrome by completely
to function, such as amino acids, simple sugars, changing the diet to a hypoallergenic plan. Sugar,
fatty acids, vitamins, and minerals. The intestines white flour products, all gluten-containing grains
also contain special “carrier proteins” that bind to (especially wheat, barley, oats, and rye), milk and
certain nutrients and transport them through the dairy products, high fat foods, caffeine products, alco-
intestinal wall and into the bloodstream. hol, and hidden food allergies determined by testing
However, in leaky gut syndrome, the spaces must all be eliminated for several years. Chewing
between the cells of the intestinal wall become food more thoroughly, eating frequent small meals,
enlarged, which lessens the ability of the intesti- and eating more slowly can also help.
nal wall to keep out large undesirable molecules,
so that they leak across the intestinal wall and
into the body. When incompletely broken down least restrictive environment (LRE) The setting in
foods enter the body, the immune system mounts which a child with autism (or other disability) can
Lemke, Leslie 107

be educated with no more segregation than is abso- legal rights/protection See INDIVIDUALS WITH DIS-
lutely necessary. Students with autism should have ABILITIES EDUCATION ACT; REHABILITATION ACT OF
the opportunity to participate as fully as possible 1973.
in school and school activities with classmates who
are not disabled.
The concept of “least restrictive environment” Lemke, Leslie (1952– ) Blind musical savant
is one of the most confusing and controversial in with cerebral palsy who was featured on 60 Minutes
education for children with disabilities. As origi- in the 1980s with several other savants.
nally formulated in Public Law 94-142, children Born prematurely in Milwaukee in 1952, Leslie
with disabilities were to be guaranteed a “free Lemke developed brain damage, retinal problems
appropriate public education” in the “least restric- and glaucoma, requiring the removal of his eyes in
tive environment,” but it was not clear what that the first months of life. Given up for adoption by his
meant. The concept was more fully described in mother, Lemke was taken in by foster mother May
the INDIVIDUALS WITH DISABILITIES EDUCATION ACT Lemke, 52, a nurse-governess who had raised five
(IDEA), which required that learning-disabled children of her own.
students be placed, when appropriate, in set- In a modest cottage on Lake Pewaukee where
tings with nonspecial education students to pro- she lived with her husband, Joe, May taught the
vide maximum opportunities to learn in the least infant how to swallow so he could eat, and how to
restrictive environment. Generally, a child with make sounds so he could communicate. When he
autism should be served in the regular classroom was older, May strapped his body to hers to teach
with as much interaction with nonhandicapped him how to walk. She placed his hands over hers as
classmates as possible. A child with autism may be she played simple tunes on a piano. He responded
removed from the regular classroom only when to music and rhythm. He also had a remarkable
the nature or severity of the disability is such memory and would often repeat a whole day’s
that the education in regular classes cannot be conversation, word for word. At first, Lemke played
achieved even with the use of supplementary aids and sang the simple tunes his mother sang or the
and services. popular songs he heard on the radio.
However, for specific areas of intensive training, But one evening when Leslie was about age 14,
it is appropriate to remove a child from the regu- he listened to a TV program featuring Tchaikovsky’s
lar classroom. The child’s placement and services Piano Concerto No. 1. Later that night, Lemke sat
depend on the child’s individual needs, not on down at the piano and flawlessly played the piece
administrative convenience. from beginning to end after hearing it just once.
Before a student’s least restrictive environment As a way of sharing what she called God’s gift
is determined, the student’s educational needs of Leslie’s music, May Lemke began having him
must be identified. After the school determines the play at concerts at the county fair, in churches, and
student’s educational strengths and needs, annual at schools. In June 1980 Leslie gave a concert in
program goals and objectives are developed, which Fond du Lac, Wisconsin. Wire services picked up
are part of the INDIVIDUALIZED EDUCATION PROGRAM his story, which prompted Walter Cronkite to fea-
(IEP). Only after the IEP is developed does the team ture Lemke on his CBS Evening News program in
consider the placement options. The school must December 1980. Other programs, including Dona-
make these decisions of placement when writing hue, That’s Incredible, and Oprah hosted the Lemkes,
the child’s IEP. Settings in regular education pro- followed by 60 Minutes in October 1983.
grams are considered less restrictive than special Lemke has given concerts throughout the United
programs or schools. States and Japan, and in 1984 gave a command
There must be compelling educational reasons, performance for the Crown Prince and Princess in
based on the individual student’s educational needs, Norway. Today he continues to give concerts, and
for removing the student from the regular class- also plays for free at schools, nursing homes, pris-
room. Those reasons must be listed on the IEP. ons, and churches.
108 lifestyle planning

In the 1980s, May Lemke was diagnosed with on their own, while others live in their own homes
Alzheimer’s disease; her youngest daughter Mary if they have help with major issues, such as personal
took both May and Leslie into her home in 1984, as finances or dealing with the government agencies.
May’s Alzheimer’s progressed. May died at Mary’s This assistance can be provided by family, a profes-
home on November 6, 1993. sional agency, or another type of provider.
Leslie Lemke still lives with May’s daughter, Living with parents Parents who choose to
Mary Parker, in Arpin, Wisconsin. Although some live with their autistic adult child may obtain
savants stop playing when a parent dies, Leslie con- government funds to help offset costs, including
tinues to play and occasionally performs. He can SUPPLEMENTAL SECURITY INCOME, Social Security
not only repeat a song accurately after hearing it Disability Insurance, and Medicaid waivers. Infor-
only once, but he can improvise and compose new mation about these programs is available from the
songs with his own words and effects. Yet he has Social Security Administration (SSA). An appoint-
never had a music lesson in his life. Today his con- ment with a local SSA office is a good first step to
certs are infrequent, not because of Lemke’s lack of take in understanding the programs for which the
energy or ability, but because of the effort involved young adult is eligible.
in travel and Mary Parker’s health limitations. Foster homes Some families share their homes
with unrelated adults with disabilities. If the home
owners teach self-care and housekeeping skills and
lifestyle planning A record of what the family arrange leisure activities, it is called a “skill-devel-
would like to happen to ensure the future of some- opment” home.
one with a disability such as autism. This informa- Supervised group living People with autism
tion is recorded in a “letter of intent” that, while often live in group homes or apartments staffed
not a legal document, is as important as a will and by professionals who help the residents with basic
a SPECIAL NEEDS TRUST. needs, such as meal preparation, housekeeping,
In lifestyle planning, parents need to make deci- and personal care. Higher-functioning adults may
sions about where their child will live, what educa- be able to live in a home or apartment where sup-
tion will be pursued, employment, social activities, port staff visit only a few times a week. These resi-
religious affiliation, medical care, behavior man- dents with autism usually prepare their own meals,
agement, advocacy, guardianship, trustees, and go to work, and conduct other daily activities on
final arrangements. their own.
In addition, detailed instructions need to be Institutions Although the trend in the past 30
included for helping the person with the typical years has been to avoid placing people with dis-
ACTIVITIES OF DAILY LIVING, such as bathing, dress- abilities into long-term care institutions, this alter-
ing, feeding, and toileting. Rather than write a native is still available for individuals with autism
huge document describing how to do these things, who need intensive, constant supervision. Mod-
experts recommend the family videotape how ern facilities are much more pleasant places to live
these activities are performed in different social set- than their predecessors, and staff members, treat
tings. The ultimate goal is to make the transition residents as individuals with human needs, offering
from parental care to independent living, residency opportunities for recreation and simple but mean-
in a group home, or moving in with other family ingful work.
members as easy as possible.

low-functioning autistic disorder (LFAD) A


living arrangements Autism is a condition along a condition on the autistic spectrum that includes
continuum, so it is possible to have only very mild most of the people with autism (between 70 and
effects or to be almost completely incapacitated by 90 percent of all people with autism). LFAD is also
this disorder. Some adults with one of the AUTISM three to four times more likely to occur in boys
SPECTRUM DISORDERS (ASDs) are able to live entirely than girls.
low-functioning autistic disorder 109

Symptoms and Diagnostic Path aggressive acts are used to communicate as well.
People with HIGH-FUNCTIONING AUTISTIC DISORDER However, in many cases of severe autism, the
(HFAD) and LFAD share many of the same symp- person is able to communicate through sign lan-
toms, but those with LFAD tend to have a lower IQ, guage, although this communication is still typi-
more symptoms, and more severe symptoms. cally limited to a protest or a request, with a lack
People with LFAD as a group have an average of focus on grammatical structure. Experts sus-
verbal and nonverbal IQ of about 55; an IQ of less pect that sign language is used more often than
than 70 is classified as mentally retarded. On the speech because autistic people capable of speech
other hand, people with HFAD have a nonverbal IQ have problems with vocal volume, intonation,
average like that of the general population (100), and stress patterns. Because understanding into-
while verbal IQ is significantly less (85). nation is an important part of understanding stress
Most people with low-functioning autism are within sentences and words, a problem in picking
never capable of speech. Stereotyped and repetitive up intonation means the person will have trouble
mannerisms and sensory abnormalities are com- understanding words, sentences, and meaning in
mon, and in some cases, such behaviors can lead language. In addition, many autistic people take
to self-injury or aggressive responses directed out- speech and interpretation quite literally; however,
ward when disruptions of ritualistic mannerisms or sign language does not require a person to infer
activities occur. Those with LFAD also have a higher meaning from words.
rate of medical problems (especially EPILEPSY, which
occurs in about 28 percent of those with low-func- Treatment Options and Outlook
tioning autism). If a child with LFAD does not speak by the age
Most people with LFAD communicate by move- of six, he or she will probably never be able to
ments that are protests or requests. Self-injury and speak.
M
mainstreaming Placement of a disabled child with that their children’s needs will not be met in a regu-
nondisabled peers in a regular classroom. Main- lar classroom setting, mainstreaming does not mean
streaming was introduced in the 1970s as a result that special-education students are “dumped” into
of PUBLIC LAW 94-142, which mandated that special classes indiscriminately. Rather, students are placed
needs children be placed in the LEAST RESTRICTIVE in a regular classroom with support services so they
ENVIRONMENT. Until the approval of P.L. 94-142 in can perform adequately. The concept of main-
1975, most special needs children (from mildly to streaming is a response to the fact that students can
severely disabled), were educated in self-contained benefit from regular classroom placement if they
settings. get additional assistance at the same time. Forms of
The philosophy of mainstreaming disabled chil- assistance might be the use of an aide, modification
dren into the regular classroom comes from the idea of instruction, more instruction time, and commu-
that since most individuals will be “mainstreamed” nication with the regular classroom teacher.
into society, the integration of regular and spe- Parents of nondisabled children often complain
cial needs students should begin at an early age. that the disabled child might disrupt the class or
It was also believed that school resources could be take up too much of the teacher’s time. Both are
used more efficiently if special needs students were legitimate concerns, and if any child is so disruptive
placed in the regular classroom. Mainstreaming it interferes with the functioning of the class, then
also required regular educators to share the respon- intervention is necessary.
sibility for disabled students with special educators. Considerable time, energy, and planning go into
Conversely, mainstreaming benefits regular educa- every successful mainstreaming experience. Parents
tion students by increasing their understanding and must be advocates for their children and provide
tolerance of students with differences. input about the type and amount of mainstream-
Longitudinal studies of mainstreaming over the ing that takes place, and they need to forge positive
past two decades indicate that mainstreaming is relationships with school personnel. This should be
defined differently depending on the school and done during the development and implementation
school district. In most school systems, mainstream- of the INDIVIDUALIZED EDUCATION PROGRAM (IEP).
ing involves placing a special needs student in the Mainstreaming works when
regular classroom setting for one subject area or a
portion of the day, depending on what is best for • parents and teachers work together
the student. According to research, mainstreaming
• specific mainstreaming experiences are recorded
can be a valid alternative to self-contained class-
in the child’s IEP
rooms, but it is not an appropriate practice for all
special needs students. The student’s need, teacher • special education teachers meet with regular
training, attitudes toward mainstreaming, and cost classroom teachers in the mainstreamed setting
factors must all be carefully balanced. • mainstream teachers get information on the
Most students with learning disabilities are edu- special education student’s strengths and needs
cated in the regular classroom while receiving sup- as well as techniques considered helpful for the
port services. Although parents sometimes worry student’s particular learning disability

110
medications for autism 111

• mainstream teachers have time to consult with biweekly blood tests are required to ensure that the
special education teachers to discuss student side effects are not becoming problematic.
progress
Antiepileptic Drugs
• regular students are given information to better
understand students with special needs ANTIEPILEPTIC MEDICATION also controls the aggres-
sive behaviors in people with autism by helping
to stabilize brain activity. However, these drugs
medications for autism Medication to control require regular blood testing in order to ensure that
behavioral symptoms is one of the most common liver or bone marrow damage does not occur.
treatments for autism today, but no single drug can Valproate (Depakote) is a common antiepilep-
control all autism symptoms completely. Medica- tic that can lessen explosive behaviors and aggres-
tions used to treat autism fall into several catego- sion. Since many children with autism also have
ries, including antipsychotics, antiepileptics, blood seizure disorders, Depakote has the added benefit
pressure medications, antidepressants, stimulants, of treating both behavior problems and seizures.
and other types of drugs. Most of the side effects (such as a sedative effect
and an upset stomach) are not severe. However, in
Antipsychotics rare cases, Depakote can cause liver damage, so fre-
One of the most common types of medications quent blood tests are required to monitor the level
and the most widely studied for autism are the of this drug in the blood.
ANTIPSYCHOTICS, which help to control aggressive Carbamazapine (Tegretol) is another antiepilep-
behaviors. Originally developed for treating schizo- tic medication that has the same benefits as Depa-
phrenia, these drugs have been found to decrease kote. This drug may cause a rash or bone marrow
hyperactivity, irritability, repetitive behaviors, problems.
withdrawal, and aggression in individuals with
autism. (However, autism and psychosis are not in Blood Pressure Medications
any way related.) Four that have been approved Certain medications used to treat high blood pres-
for the treatment of autism are clozapine (Clozaril), sure have shown promise in alleviating the aggres-
RISPERIDONE (RISPERDAL), olanzapine (Zyprexa) and sive behaviors common in autism. Although experts
quetiapine (Seroquel), but only risperidone has are not sure why these drugs work, for some chil-
been investigated in a controlled study of adults dren they do stem aggressiveness and emotional
with autism. Like the antidepressants, these drugs outbursts. Of these, propranolol (Inderal) and pin-
all have potential side effects, including sedation. dolol (Visken) both seem to lessen aggression and
Risperdal is probably the most commonly used explosions.
antipsychotic, which can help lessen aggression, agi- Side effects include a sedative effect, aggravation
tation, and explosive behaviors. It has been studied of asthmatic symptoms, and light-headedness or
extensively in treatment of autism and works well. fainting due to lowered blood pressure.
As with any medication, there can be side effects,
which may include a sedative effect, weight gain, Antidepressants and Antianxiety Medications
dizziness, and muscular stiffness. Although there are no psychiatric medications that
Two other antipsychotics, Zyprexa and Sero- can directly target autism itself, many ANTIDEPRES-
quel, have the same effects as Risperdal and the SANTS and antianxiety medications can be used
same side effects. However, Zyprexa does not cause to treat specific symptoms often found in autism,
muscular stiffness, and Seroquel causes less of a such as aggression, self-injury, anxiety, depression,
problem with weight gain. OBSESSIVE-COMPULSIVE DISORDER, and attention def-
Clozapine (Clozaril) has not yet been stud- icit hyperactivity disorder (ADHD).
ied extensively, but so far it appears to have the In particular, selective serotonin reuptake inhib-
same benefits as Risperdal. However, because Clo- itors (SSRIs) have been effective in treating depres-
zaril can cause serious bone marrow suppression, sion, obsessive-compulsive behaviors, and anxiety
112 mental retardation

that are sometimes present in autism. Because been prescribed for children with autism. Although
researchers have consistently found abnormally few studies have been done, these drugs may
high levels of the neurotransmitter SEROTONIN in the increase focus and decrease impulsivity and hyper-
blood of a third of individuals with autism, experts activity in autism, particularly in higher-functioning
suggest that the SSRI drugs (that lower serotonin children. Dosages need to be carefully monitored,
levels) could potentially reverse some of the symp- however, because behavioral side effects are often
toms in autism. Three drugs that have been studied dose-related.
as a possible autism treatment are the SSRIs fluVOX-
AMINE (LUVOX) and FLUOXETINE (PROZAC) and the Other Medications
tricyclic antidepressant CLOMIPRAMINE (ANAFRANIL). Lithium—a medication more typically used to treat
Studies have shown that they may reduce the fre- bipolar disorder—is also effective in calming explo-
quency and intensity of repetitive behaviors, and sive outbursts and agitation. However, its negative
may decrease irritability, tantrums, and aggressive effects on the thyroid have led many physicians to
behavior. Some children have shown improve- avoid this drug for autistic patients. Lithium also
ments in EYE CONTACT and responsiveness. can cause weight gain, stomach upset, and frequent
Other antidepressant and antianxiety drugs, urination, and requires regular blood tests and car-
such as Elavil, Wellbutrin, Valium, Ativan, and diac testing.
Xanax, have not been studied as much in regard to Gabapentin (Neurontin) and lamotrigine (Lamic-
autism but may have a role in treating behavioral tal) are other medications that may have potential
symptoms. However, all these drugs have potential benefit in the treatment of autism but that have
side effects, which should be discussed before treat- not been studied sufficiently to be recommended
ment is started. for use with children. These medications seem to
For some classes of drugs, the doses that can provide the same benefits as Depakote, as well as
reduce symptoms such as aggression or anxiety are the same side effects, but insufficient data exists on
much lower for people with autism than for other their overall effect.
patients. For example, the best dose for SSRI drugs
such as Prozac and Zoloft may be only one-third
of the typical starting dose for depressed patients. mental retardation Below-average intellectual
Too high a dose in patients with autism may trigger functioning abilities as determined by IQ tests,
agitation or insomnia. and low adaptive functioning such as self-care and
There is no medical test to determine which anti- independence skills. (An IQ of 100 is considered
depressant medication will work best; a “trial and “average.”) Between 75 and 80 percent of people
error” approach works best, as dosages need to be with AUTISM SPECTRUM DISORDERS are also mentally
adjusted differently for each person, and one medi- retarded. Of these, 15 to 20 percent are considered
cation may be ineffective or have negative effects severely retarded, with IQs below 35. However, not
while others are helpful. everyone with autism has a low IQ; in fact, more
Although psychiatric medications are widely than 10 percent of people with autism have an
used to treat the symptoms of autism and they can average or above-average IQ. A few show excep-
be helpful to many older children and adults, some tional intelligence. Most people who are mentally
experts are concerned about their use in younger retarded develop skills at about the same level in
children. There is relatively little research on their different areas, but individuals with autism typi-
use for children with autism, and almost no studies cally have deficits in certain skill areas (most often
on the long-term developmental effects, especially in social skills and communication) with distinct
for the newer medications. abilities in other areas.
Traditionally, an individual is considered to have
Stimulants mental retardation if IQ is below 70; there are sig-
Stimulants such as Ritalin, Adderall, and Dexedine, nificant limitations in two or more adaptive skill
used to treat hyperactivity in children, have also areas; and if the condition has been present from
mental retardation 113

childhood. Intelligence testing alone is only part independent. There also may be concerns with
of the assessment of mental retardation. A person regard to understanding health and safety issues.
with impaired intellectual functioning who does not Not all skills are necessarily impaired, and individu-
have impairments in adaptive skill areas may not be als with mental retardation may learn to function
diagnosed as having mental retardation. “Adaptive independently in many areas. However, education
skill areas” include those daily living skills needed programs, providing skilled assistance and ongoing
to live, work, and play in the community, such as support, are necessary for determining appropriate
communication, self care, home living, social skills, living and work environments.
leisure, health and safety, self direction, functional While the term “mental retardation” still exists as
academics, community involvement, and work. a clinical diagnosis, contemporary usage is moving
Adaptive skills are assessed in the person’s typical toward terms such as “developmental disabilities,”
environment across all aspects of life. Psychologists which some believe do not carry the same negative
and educators assess adaptive behavior by interviews connotations or misuse. In the past, those who were
with people who know the person as well as by tests retarded were traditionally divided by IQ scores into
completed by people who know the person. “educable,” “trainable” and “custodial.” Today, the
Interpreting an IQ score for a person with autism more commonly used terms include “mild,” “mod-
is uniquely difficult, however, because most intelli- erate,” “severe,” or “profound” categories, based on
gence tests are not designed for people with autism, the level of functioning and IQ. Individuals with
who tend to perceive or relate to their environment mental retardation are not a homogenous group,
in atypical ways. When tested, some areas of ability but have widely differing levels of function.
are normal or even above average, and some areas “Mild retardation” is used to specify an indi-
may be especially weak. For example, a child with vidual whose IQ test scores lie between 55 and 69,
autism may do extremely well on the parts of the and correspond to an educators’ label of “educable
test that measure visual skills, but earn low scores retarded.” The individual is capable of learning basic
on the language subtests. Although it has been esti- academic subjects. Many people with mild retarda-
mated that up to 75 percent of people with autism tion are able to live and work independently.
are also mentally retarded, research studies have “Moderate retardation” is a classification used
often used inappropriate IQ tests (such as verbal to specify an individual whose IQ test scores are
tests with nonverbal children) to estimate intelli- between 40 and 55; it corresponds to the earlier
gence level. label of “trainable.” These individuals can usually
The effects of mental retardation vary consider- learn functional academics and vocational skills.
ably among people, just as the range of ability var- They often achieve coached employment goals and
ies considerably among people who do not have live with limited assistance.
mental retardation. About 87 percent are mildly “Severe” and “profound” mental retardation
affected, and will be only a little slower than average applies to individuals with IQ scores below 25.
in learning new information and skills. As children, These are the most seriously impaired, often charac-
their mental retardation is not easy to see, and may terized by physical and sensory impairment as well
not be identified until school age. As adults, many as mental retardation. They can sometimes achieve
individuals with mental retardation will be able to supported employment goals; more typically they
lead independent lives in the community. can function at the level of sheltered employment.
The remaining 13 percent of people with men- They generally require significant assistance with
tal retardation (those with IQs under 50) will have daily living skills.
serious limits in function. However, with early If a child with autism is going to have an IQ
intervention, a good education, and appropriate test, parents should request nonverbal intelligence
supports as an adult, all can lead satisfying lives in tests that do not require language skills, such as
the community. the Test for Nonverbal Intelligence (TONI). Fur-
People with mental retardation may have trouble thermore, regardless of the result, autistic children
communicating, interacting with others, and being will develop more skills as they grow older, and
114 mirror neurons

appropriate therapies and education can help them analyzed suppressing a type of brain wave (called
reach their true potential. “mu”) that is blocked when the brain is engaged in
doing, seeing, or imagining action, and correlates
with the activity of the mirror neuron system. In
mirror neurons Cells, in a part of the brain called most people, this mu wave is suppressed both in
the premotor cortex, that fire when a person per- response to their own movement and to observ-
forms an action or when the person sees someone ing the movement of others. Subjects were tested
else perform the action. Mirror neurons were first while they moved their own hands and while they
identified in macaque monkeys in the early 1990s, watched videos of visual white noise, of bouncing
when they were called “monkey-see, monkey-do balls, and of a moving hand.
cells.” Scientists noticed that these cells fired both As expected, the mu wave was suppressed in
when a monkey performed an action itself and the control subjects both when they moved and
when it observed another living creature perform when they watched another human move. In other
that same action. words, their mirror neuron systems acted normally.
Although it has been impossible to directly study The mirror neurons of the subjects with autism
these neurons in people (since human subjects can- spectrum disorders, however, responded only to
not be implanted with electrodes), several indirect their own movement.
brain-imaging measures, including electroencepha- The findings provide evidence that individuals
lograph (EEG), have confirmed the presence of a with autism have a dysfunctional mirror neuron
mirror neuron system in humans. When these cells system, which may contribute to many of their
are working normally, seeing is doing. Scientists symptoms—especially those that involve under-
believe that the human mirror neuron system is standing and responding appropriately to others’
involved not only in making and observing move- behavior.
ment, but also in more complex mental processes Although EEGs are not designed to measure the
such as language, for instance, or being able to imi- mu brain rhythms of low-functioning children with
tate and learn from others’ actions or decode their autism because their repetitive movements con-
intentions and empathize with their pain. These are found EEG signals, it could be used as a tool for ear-
all areas with which autistic people have problems. lier diagnosis of high-functioning autistics, whose
Because the hallmark of autism is a problem in disorder today is typically not recognized until age
these sorts of social interaction and communication four or later.
skills, research has suggested that a dysfunctional Earlier diagnosis in turn could lead to earlier
mirror neuron system may explain the symptoms interventions. One treatment possibility suggested
of autism. by the study’s findings is biofeedback. In fact, the
In autistic individuals, the brain circuits that mu wave rhythm involved is one that patients
enable people to perceive and understand the most readily learn to control. By imagining action,
actions of others do not behave in the usual way, subjects are able to move a paddle in a computer
according to researchers from the University of Cal- game of Pong after just four to six hours of practice.
ifornia, San Diego. According to their research, EEG Because this mu rhythm is one that everyone has
recordings of 10 individuals with autism showed a access to at will, it could be used in therapy.
dysfunctional mirror neuron system—their mirror Alternatively, ordinary mirrors could be used
neurons respond only to what they do and not to in treatment to fool the brain. Researchers have
what others do. treated amputees who experience pain in their
The San Diego team collected EEG data in 10 missing limbs by using a mirror reflection of the
males with AUTISM SPECTRUM DISORDERS who were healthy limb to fool the brain into believing that the
considered “high-functioning” (defined as having missing limb has been restored to pain-free motion.
age-appropriate verbal comprehension and pro- Since autistics’ mirror neurons respond to their
duction and IQs above 80) and 10 age- and gender- own motion, researchers hope that their brains
matched control subjects. The EEG data was might be tricked into believing their own reflected
musical savant 115

movements are the movements of another human multisystem developmental disorder A term
being. developed by Dr. Stanley Greenspan, a child psy-
For the first time, researchers have been able to chiatrist and expert on autism, for an autistic-like
relate symptoms unique to autism (loss of empa- set of symptoms.
thy and the abilitiy to imitate) to the function of a
brain circuit (the mirror neuron system). Research-
ers are now studying whether another problem muscle tone Research has suggested that about 30
of autism—the ability to understand metaphors— percent of children with autism have a moderate-
might be related to mirror neurons as well. to-severe loss of muscle tone that can limit their
gross and fine motor skills. These children also tend
to have low potassium levels, which is significant
Modified Checklist for Autism in Toddlers (M- because potassium aids in good muscle tone.
CHAT) A simple, self-administered parental ques-
tionnaire for use during regular pediatric visits,
designed to screen for AUTISTIC DISORDER in children. musical savant An individual who can identify
The M-CHAT is an expanded American version of exact musical pitches and play back a complex
the original CHECKLIST FOR AUTISM IN TODDLERS piece of music after hearing it once. This type of
(CHAT) formulated in the United Kingdom, which unusual ability typically appears in a person with
was a simple screening tool for identification of AUTISTIC DISORDER. The most common savant skill
autistic children at 18 months of age. The M-CHAT among autistic people is related to music.
tests for AUTISM SPECTRUM DISORDERS against nor- This musical superiority may be a result of an
mally developing children. A child fails the checklist abnormally high sensitivity to fine pitch differ-
when two or more critical items are failed, or when ences in sounds, according to some researchers.
any three items are failed. This enhanced sensitivity to different pitches may
M-CHAT was redesigned to improve the sensitiv- account for the observation that some autistic indi-
ity of the CHAT and position it better for an American viduals excel at musical perception tasks and for
audience; M-CHAT had a better sensitivity than the the ability of musical savants to determine absolute
original CHAT because children up to 24 months of pitch.
age were screened, with the aim of identifying those The difference between a normal musician and a
who might regress between 18 and 24 months. musical savant is that the normal musician usually
The M-CHAT consists of 23 questions—nine plays from written scores, whereas musical savants
questions from the original CHAT and an additional always play initially by ear. The immediate recall of
14 questions addressing core symptoms in young musical fragments by savants is usually not a literal
autistic children. The original observational part of reproduction of the material heard. Instead, the
the test (that is, section B) was omitted. In the M- savant preserves essential musical structural regu-
CHAT, the more questions children fail, the higher larities present in the original music.
their risk of having autism. See also AUTISTIC SAVANT; SAVANT SYNDROME.
N
National Institutes of Health Autism Coordinat- used to treat autism include HALOPERIDAL (Haldol)
ing Committee (NIH/ACC) A government com- and pimozide.
mittee designed to enhance the quality, pace, and More recently, newer versions of neuroleptics,
coordination of efforts at the National Institutes of called “atypical neuroleptics,” have been developed
Health to find a cure for autism. Founded in 1997 to treat autism patients’ symptoms without causing
at the request of Congress, the NIH/ACC has been some of the unpleasant side effects of more tradi-
instrumental in the research into, understanding tional neuroleptics. Some of these unpleasant side
of, and advances in treatment of autism. effects include tardive dyskinesia (jerky, uncontrol-
NIH Institutes that are members of the NIH/ACC lable movements), slowed thinking, parkinsonism,
include: National Institute of Child Health and or dystonia (postural spasms). Atypical neuroleptics
Human Development (NICHD), National Institute include clozapine and RISPERIDONE (RISPERDAL).
on Deafness and Other Communication Disor- The results of a number of preliminary studies
ders, National Institute of Mental Health (NIMH), suggest that risperidone and other atypical neuro-
National Institute of Neurological Disorders and leptics may help reduce repetitive behaviors, aggres-
Stroke, and National Institute of Environmental sion, and impulsivity and improve social relatedness
Health Sciences. In addition, other NIH Institutes, in children, adolescents, and adults with autism.
centers, and offices, as well as other federal agen- Relatively low doses of risperidone appear to be
cies and parents’ groups, participate in NIH/ACC effective. Although the exact reason why atypical
meetings focusing on specific topics. The directors neuroleptics work is unclear, scientists suspect that
of the NIMH and NICHD co-chair the NIH/ACC. the drug’s effects on neurotransmitters (SEROTONIN
The NIH/ACC is also involved in the broader and dopamine) may explain the beneficial effects
federal Interagency Autism Coordinating Commit- on social behavior.
tee (IACC) that is composed of representatives from
various component agencies of the U.S. Depart-
ment of Health and Human Services, including the neurologically typical A term used to refer to
NICHD, as well as other governmental organiza- people who do not have autism.
tions. The IACC is chaired by the director of NIMH.

neurologist A physician specializing in brain


natural language paradigm The older name for function. Neurologists can assess and treat with
PIVOTAL RESPONSE TRAINING. medication a variety of neurological conditions
and disorders, and can perform detailed examina-
tions of all the neurological structures in the body,
neuroleptic A class of antipsychotic drug that has including the nerves of the head and neck, mus-
been used for several decades to treat individuals cular strength and movement, sensation, balance,
with autism. However, the need for long-term use and reflex testing. In some cases, detailed questions
and the danger of unwanted side effects have lim- about memory, speech and language, and other
ited their effectiveness. Examples of neuroleptics cognitive functions are part of the examination.

116
Nonspeech Test for Receptive/Expressive Language 117

Neurologists also use other common tests, usually with the same kind of experience that a clin-
including CAT (computerized axial tomography) ical psychologist needs but sometimes in different
and MRI (magnetic resonance imaging) scans to areas of psychology such as “school” or “counsel-
provide detailed pictures of the brain, spinal struc- ing.” They also have specialized education in neuro-
tures, and blood vessels. A neurologist can also psychology and neuroscience, including at least two
perform a lumbar puncture (spinal tap) to obtain years of postdoctoral training in a clinical setting,
a patient’s cerebrospinal fluid for analysis. Some and often have passed a national board certification
neurologists interpret EEG (electroencephalogra- exam. Those holding an ABCN/ABPP Diploma in
phy) used in the evaluation of seizure disorders. Clinical Neuropsychology have the clearest evidence
In addition, neurologists use many types of drugs of competence as clinical neuropsychologists.
to treat problems involving the nervous system. A See also NEUROPSYCHOLOGY.
neurologist may send a patient for a surgical evalu-
ation, but does not perform surgery.
A neurologist must complete a four-year premedi- neuropsychology The study of the relationship
cal university degree and four years of medical school between brain function and behavior. This field
followed by at least three years of specialty training includes NEUROPSYCHOLOGISTS who work in experi-
in an accredited neurology residency program. After mental and clinical settings; experimental neuro-
residency training, neurologists may choose to enroll psychologists, who work with both human and
in a one- or two-year fellowship program, which animal models; and clinical neuropsychologists,
offers the opportunity to focus on a subspecialty of who look for procedures that will help people with
neurology such as stroke, dementia, or movement neurologically based disorders by studying brain
disorders. After completing the educational require- and behavior relationships.
ments, neurologists may seek certification from
the American Board of Psychiatry and Neurology neurotransmitter A chemical messenger in the
(ABPN). To be eligible for certification, an applicant brain that is released from the ends of a brain cell
must be a licensed physician with the required years and carries information across the gap between cells,
of residency who has passed both a written and an where it arrives at specific sites on a receiving cell.
oral exam administered by the ABPN. Examples of neurotransmitters include acetyl-
choline, dopamine, epinephrine, SEROTONIN and
neuropsychologist A psychologist who focuses on various neuropeptides. Treatment for attention dis-
the relationship between behavior and neurologi- orders involving medications focuses primarily on
cal functions. A pediatrician, medical specialist such regulating the action of neurotransmitters.
as a neurologist, or school specialist might suggest
a referral to a neuropsychologist for an evaluation. nonfluent aphasia A language disorder, char-
This is especially likely if a child’s abilities are com- acterized by little speech and poor articulation, in
plicated or difficult to assess, if there are thinking which a person uses primarily nouns and verbs;
problems or behavior patterns that might be closely automatic responses such as “yes” and “no” prevail.
linked to disrupted brain function, or if the child This condition is also called Broca’s APHASIA.
might have some kind of actual brain damage. Neu-
ropsychologists are trained to think about the link
between brain function and behavior. Nonspeech Test for Receptive/Expressive Lan-
The more a problem has to do with a child’s guage A test designed to provide a systematic way
capacity to learn or master skills or appears to be for observing, recording, and summarizing the vari-
linked to a problem with brain function, the more ety of ways an individual may communicate. This
the child would need a neuropsychologist. tool determines a person’s skills as a communica-
Clinical neuropsychologists have a Ph.D., Psy.D., tor, whether speech or nonverbal means are used
or Ed.D. from a university or professional school, for communication.
O
obsessive-compulsive disorder (OCD) An anxi- and go, may get better over time, or they can grow
ety disorder, characterized by severe obsessions progressively worse.
and/or compulsions, that is sometimes present in Often, people with OCD may avoid situations
people with AUTISTIC DISORDER. OCD affects men in which they might have to confront their obses-
and women about equally, occurring in about one sions, or they may try unsuccessfully to use alcohol
in 50 people (or about 3.3 million adult Americans). or drugs to calm themselves. Severe OCD can keep
It can occur at any time but usually first appears in someone from working or from carrying out nor-
the teens or early adulthood. A third of adults with mal responsibilities at home, but more often it does
OCD experienced their first symptoms as children. not develop to those extremes.
Evidence suggests that OCD might run in families. Many healthy people have some of the symp-
Left untreated, obsessions and the need to perform toms of OCD, such as checking the stove several
rituals can take over a person’s life. OCD is often a times before leaving the house. But the disorder
chronic, relapsing illness. is diagnosed only when such activities consume at
There is growing evidence that OCD is caused least an hour a day, are very distressing, and inter-
by a physical problem in the brain, not because fere with daily life. Most adults with this condition
of family problems or because of attitudes learned know that what they are doing is senseless, but they
in childhood, such as an emphasis on cleanliness, cannot stop. However, children with OCD may not
or a belief that certain thoughts are dangerous or realize that their behavior is unusual.
unacceptable. In addition to autism, OCD is often linked
Brain scans using positron emission tomography with other anxiety disorders, major depression,
(PET) have found that those with OCD have dif- TOURETTE SYNDROME, and attention deficit hyperac-
ferent patterns of brain activity from people with tivity disorder.
other mental illnesses or people with no mental
illness at all. In addition, PET scans show that in Treatment Options and Outlook
patients with OCD, both behavioral therapy and A combination of medication and psychotherapy
medication produce changes in a part of the brain is often helpful for most patients; some individu-
called the caudate nucleus. als respond best to one therapy, some to another.
Medications that are effective are the antidepres-
Symptoms and Diagnostic Path sants FLUVOXAMINE, paroxetine, sertraline, CLO-
People with OCD suffer intensely from recurrent, MIPRAMINE, and FLUOXETINE. Others are showing
unwanted thoughts (obsessions) or rituals (com- promise and may soon be available. Behavioral
pulsions), which they feel they cannot control. Rit- therapy (specifically “exposure and response pre-
uals such as handwashing, counting, checking, or vention”) is also helpful in treating OCD. This type
cleaning are often performed as a way of prevent- of therapy involves exposing the person to what-
ing obsessive thoughts or making them go away. ever triggers the problem and then helping the
Performing these rituals, however, provides only person avoid the usual ritual. This might involve
temporary relief, and not performing them mark- having the patient touch something dirty and then
edly increases anxiety. The symptoms may come not wash his hands. This therapy is often successful

118
oppositional defiant disorder 119

in patients who complete a behavioral therapy pro- tion examination. Those who pass the test are called
gram, although results have been less favorable in “registered occupational therapist.” Occupational
some people who have both OCD and depression. therapy course work includes physical, biological,
and behavioral sciences and the application of occu-
pational therapy theory and skills. Completion of
occupational therapists Professionals who work six months of supervised fieldwork is also required.
directly with individuals with impaired physical or
motor functions caused by disease, injury, or sur-
gical or other medical interventions. Occupational occupational therapy (OT) A type of treatment
therapists work with individuals who have condi- that can help improve the sensory needs of children
tions that are mentally, physically, developmen- with autism, who often have lessened or height-
tally, or emotionally disabling, such as autism, and ened sensitivity to sound, sight, smell, touch, and
help them to develop, recover, or maintain daily taste. The ultimate goal of traditional OT is to help
living and work skills. They not only help clients the child participate in daily life tasks and activities
improve basic motor functions and reasoning abili- as independently as possible, such as playing, enjoy-
ties, but also compensate for permanent loss of ing school, eating, dressing, and sleeping—activities
function. Their goal is to help clients have indepen- that are often a problem for children with autism.
dent, productive, and satisfying lives. OT should be a major component of a treatment
Occupational therapists may work exclusively plan for autistic children.
with individuals in a particular age group or with OT often focuses on improving fine motor skills,
particular disabilities. In schools, for example, they such as brushing teeth, feeding, and writing; or
evaluate children’s abilities, recommend and pro- boosting sensory motor skills, including balance
vide therapy, modify classroom equipment, and in (vestibular system), awareness of body position
general, help children participate as fully as possible (proprioceptive system), and touch (tactile system).
in school programs and activities. After the occupational therapist identifies a spe-
Occupational therapists help clients perform cific problem, each child is provided with an indi-
activities of all types, such as using a computer. vidualized treatment plan that directly involves
Physical exercises may be used to increase strength parents. Occupational therapy usually takes place
and dexterity, while paper and pencil exercises in a large, sensory-enriched gym with lots of swing-
may be chosen to improve visual acuity and the ing, spinning, tactile, visual, auditory, and taste
ability to discern patterns. An autistic client with opportunities. Typically, therapy may include sen-
coordination problems might be assigned exercises sory integration activities such as massage, firm
to improve hand-eye coordination. Occupational touch, swinging, and bouncing.
therapists also use computer programs to help
clients improve decision making, abstract reason-
ing, problem solving, and perceptual skills, as well oppositional defiant disorder (ODD) A pattern
as memory, sequencing, and coordination—all of of negativism characterized by angry, hostile, and
which are important for independent living. impulsive behavior in opposition to authority fig-
In mental health settings, they may treat individu- ures. It often appears together with AUTISTIC DISOR-
als who are low-functioning autistics, choosing activ- DER; occasionally, a child who is autistic alone may be
ities that help them learn to cope with daily life, such misdiagnosed as having ODD. In fact, it is extremely
as time management skills, budgeting, shopping, rare for a physician to see a child with only ODD.
homemaking, and use of public transportation. ODD is an antisocial disorder of early to middle
Occupational therapists must have at least a childhood that may evolve into a conduct disorder,
bachelor’s degree in occupational therapy, and usually diagnosed before the age of 12; children
the profession is regulated in all states. To obtain a with oppositional defiant disorder defy adult rules,
license, applicants must graduate from an accredited are angry, and often lose their tempers. These indi-
educational program and pass a national certifica- viduals may often be out of control, overstimulated,
120 oppositional defiant disorder

or understimulated, showing behavioral patterns After all, these behaviors occur to a varying degree
that are difficult to explain and that often disrupt an in all normal children. Researches have found that
entire household. “often” is best solved by the following criteria:
ODD is considered less severe than conduct
disorder, and may involve behaviors that include • At least four times a week the person is angry
overt resistance to rules and instructions, lying, and and resentful and deliberately annoys people.
violations of other social norms. • At least twice a week the person is touchy or eas-
This is the most common psychiatric problem in ily annoyed by others, loses his temper, argues,
children, which affects more than 5 percent of them; and actively defies or refuses to comply with
in younger children it is more common in boys than requests or rules of authority figures.
girls, but as they grow older, the rate is the same in
• In the last three months, the person is spiteful
both. Usually, the child has another psychiatric dis-
and vindictive and blames others for his or her
order, or may have autistic disorder. Children with
mistakes or misbehavior.
ODD develop signs of mood disorders or anxiety
as they get older; by the time these children reach
The problems usually begin in childhood, between
the end of elementary school, about 25 percent will
ages one to three, and appear to run in families. If a
have disabling mood or anxiety problems.
parent is alcoholic and has been in trouble with the
Symptoms and Diagnostic Path law, the children are almost three times as likely to
have ODD. Biological, genetic, and environmental
The criteria for ODD include a pattern of negative,
factors may play an interweaving role. Some experts
hostile, defiant behavior lasting at least six months.
believe ODD may be linked to how a child was disci-
Any child could be oppositional upon occasion,
plined. Family interaction patterns often need to be
especially during times of fatigue or stress. The dif-
examined to fully understand and work on chang-
ference between ODD and occasional arguments,
ing the opposition.
backtalk, or disobedience is that with ODD, the
child’s hostile, uncooperative behavior is so contin- Treatment Options and Outlook
uous that it is blatantly unusual compared to other
Unfortunately, many studies suggest that chil-
children of the same age. Often, children with ODD
dren with ODD do not always respond well to
annoy others or challenge authority on purpose,
treatment. Although there have not been major
making their symptoms much more difficult to live
research breakthroughs in finding good ways to
with. The disturbance in behavior causes significant
handle this condition, there have been some small
problems with social, school, or job functioning.
improvements, especially with interventions based
At least four of the following symptoms must be
on improved parenting.
present for a diagnosis. The individual often
Children with these problems typically benefit
from some form of structured behavior manage-
• gets angry and argues
ment program at home and school which should
• actively defies or refuses to comply with the include clear and specific commands and reinforcing
requests or rules of an authority figure positive behaviors. In addition, the child should be
• deliberately annoys people exposed to consistent negative consequences given
• blames others for mistakes or misbehavior calmly in response to inappropriate behaviors. Par-
ents and caregivers also should try to provide more
• is touchy or easily annoyed by others
positive incentives than reprimands. These strate-
• feels resentful gies should be used both calmly and consistently
• is spiteful and vindictive enough to keep behavior problems from worsening
to the meltdown point. Training the parent in these
All of the criteria above include the word “often,” techniques and working with the child in therapy
which may mean different things to different people. tends to be effective.
P
patterning A series of exercises designed to the theory have concluded that it is unsupported,
improve the “neurologic organization” of a child’s contradicted, or without merit based on scientific
neurologic impairments. These exercises are per- study,” according to the AAP statement.
formed over many hours during the day by sev- In most cases, any improvement in patients
eral persons who manipulate a child’s head and undergoing patterning can be accounted for based
extremities in patterns purporting to simulate pre- on growth and development, the intensive practice
natal and postnatal movements of nonimpaired of certain isolated skills, or the nonspecific effects of
children. Patterning has been advocated for more intensive stimulation.
than 40 years for treating children with brain dam- Mainstream experts have been concerned about
age and other disorders, such as autism, learning patterning because promotional methods had made
disabilities, Down syndrome, and cerebral palsy it difficult for parents to refuse treatment for their
but is no longer accepted as helpful by a number children without having their motivation and ade-
of organizations, including the American Academy quacy as parents questioned. Moreover, dire health
of Pediatrics (AAP), which condemns patterning as consequences for children are implied if parents do
“based on an outmoded and oversimplified theory not make arrangements to have their child begin
of brain development.” Current information does patterning.
not support the claims of proponents that this treat- Several treatment options are offered, ranging
ment is useful, the academy states, and considers its from a home program to an intensive treatment
use “unwarranted.” program, which states that each succeeding option
Patterning is based on the neurologic organiza- “offers greater chance of success.” Participation in
tion theory of brain function, which many experts the intensive treatment program requires comple-
today believe is an oversimplified concept of hemi- tion of three of five preceding programs, is by invi-
spheric dominance and the relationship of sequen- tation only for the “most capable families,” and
tial development, and which notes that failure to potentially could deplete substantially a family’s
complete any stage of neurologic organization financial resources. In fact, the AAP warns, the
harms all subsequent stages. According to this the- patterning regimens can be so demanding, time-
ory, the best way to treat a damaged nervous system consuming, and inflexible that they may place con-
is to regress to more primitive modes of function siderable stress on parents and lead them to neglect
and to practice them; most cases of autism, MEN- other family members.
TAL RETARDATION, learning problems, and behavior Patterning programs use a developmental pro-
disorders are caused by brain damage or improper file designed by the Institute for the Achievement
neurologic organization, and these problems lie on of Human Potential both to assess a child’s neu-
a single continuum of brain damage, for which the rologic functioning and to document change over
most effective treatment is patterning. time. However, the validity of using this profile for
However, the AAP and other experts disagree, these areas has not been demonstrated nor has it
noting that the lack of dominance or sidedness been compared with currently accepted methods
probably is not an important factor in the cause of measuring a child’s development. In addition to
or treatment of autism. “Several careful reviews of making claims that a number of conditions may be

121
122 Peabody Picture Vocabulary Test–III

improved or cured by patterning, proponents of the to have two trainers available in the initial part of
program assert that patterning can make healthy the program, when it is most intensive.
children superior in physical and cognitive skills. PECS advantages are that it is clear, intentional,
According to providers of patterning therapy, most and initiated by the child. The child hands the
children with autism who are treated are claimed teacher or parent a picture, and the child’s request
to achieve at least one of the goals of normal physi- is immediately understood. This method also makes
cal, intellectual, or social growth. it easy for the child with autism to communicate
“The lack of supporting evidence for the use of with anyone.
this therapy,” the AAP warns, “brings into ques-
tion once again its effectiveness in neurologically
impaired children.” pediatric autoimmune neuropsychiatric disorders
associated with strep infection (PANDAS) A
recently described subgroup of childhood disorders,
Peabody Picture Vocabulary Test–III This test such as TOURETTE SYNDROME (TS) and OBSESSIVE-
measures an individual’s receptive vocabulary for COMPULSIVE DISORDER (OCD), that may be related
standard American English. Measuring one facet to a preceding streptococcal infection. Over the last
of general intelligence (vocabulary), it takes a rela- few years, in addition to OCD and TS, AUTISTIC DIS-
tively short period of time to administer and may ORDER has also been considered, although not yet
be used as an initial screening device. accepted, to fit under the PANDAS umbrella. This
new theory is controversial, and the link has not
yet been proven.
PECS An acronym for Picture Exchange Com- The evidence for autism as part of the PANDAS
munication System, a type of treatment in which a spectrum remains circumstantial. A study of 18
child attaches meanings to words through pictures, children with autism demonstrated a higher fre-
useful in both verbal and nonverbal children, as quency of a marker linked to PANDAS (D8/17
a way of producing spontaneous communication. positive B cells) than did a control group. The
Difficulty with communication is one of the main D8/17 positive children had more severe repeti-
problems endured by people with AUTISM SPEC- tive behaviors and significantly higher compul-
TRUM DISORDERS. While some children develop ver- sion scores, suggesting that autism may have an
bal language, others never speak. An augmented autoimmune basis in a subset of patients, which in
communication program such as PECS can help get itself remains controversial.
language started, as well as provide a way of com-
municating for those children who do not talk.
Developed at the Delaware Autistic Program, Peek, Kim (1951– ) A “megasavant” who was
PECS has been recognized around the world for the inspiration for the character of Raymond Bab-
focusing on the initiation component of commu- bit in the Oscar-winning movie Rain Man starring
nication. Moreover, it does not require expensive Dustin Hoffman as an autistic savant. However,
materials or equipment, and can be used in a variety Peek is not autistic.
of settings. Instead, it used APPLIED BEHAVIORAL ANAL- Peek was born on November 11, 1951, with an
YSIS methods to teach children to exchange a picture enlarged head (an encephalocele). Subsequent brain
for something they want (an item or activity). scans revealed significant brain damage: a missing
First a student is taught to exchange a picture corpus callosum (the connecting tissue between
of a desired item with a teacher, who honors the the left and right hemispheres), no anterior com-
request right away. Verbal prompts are not used. missure, and damage to the CEREBELLUM. By age
The teacher then teaches how to discriminate sym- 16 months, Peek was able to memorize every book
bols, and then how to put them together in sen- that was read to him. At age three he was reading
tences. At the same time, children are taught to by himself and looking up terms in a dictionary, but
comment and answer direct questions. It is helpful he did not walk until age four. At that time he was
pervasive developmental disorder–not otherwise specified 123

also obsessed with numbers and arithmetic, reading time with several other savants and their families
telephone directories and adding columns of tele- as well.
phone numbers. He enjoyed totaling the numbers Since 1969, Kim has worked at a day workshop
on automobile license plates as well. for adults with disabilities, preparing payroll checks
Peek is the only person ever to be diagnosed as from work sheet hours without the aid of calcula-
a “megasavant”; his brain appears to be unique. tors or adding machines.
While his motor skills are underdeveloped, he has After the movie, due to numerous requests for
the capability of total recall and remembers almost appearances, Peek became far more self-confident
everything he has read since age three. But after and able to talk to people and travels all over the
years of having his son tested, Fran Peek decided country with his father to discuss his message: rec-
it was not important to understand why his son’s ognize and respect differences in others and treat
brain worked the way it did. What was most impor- them as you want them to treat you.
tant was that he become as self-reliant as possible. He has appeared on many TV programs, includ-
Peek’s expertise includes at least 14 subject ing 20/20 and Good Morning America. Peek and his
areas, including history, politics, geography (espe- father continue to travel throughout the United
cially the roads and highways in the United States States and Canada to share Peek’s message of inspi-
and Canada), professional sports (including base- ration. His father, Fran Peek, wrote a book about
ball, basketball, football, Kentucky Derby winners, his son: The Real Rain Man (Harkness Publishing
and so on), the space program, movies, actors, the Consultants, 1996).
Bible, Mormon Church doctrine and history, cal-
endar calculations, literature, authors, telephone
area codes, major zip codes, and all TV stations and perseveration Persistent repetition of a behav-
their markets. He can identify most classical music ior or activity regardless of the result, or having
compositions and tell the date the music was writ- trouble switching from one activity to another. In
ten and the composer’s birth date and place of birth addition, one can show perseveration in ideas or
and death. He has read—and can recall—more than interest by consistently focusing on a narrow topic
7,600 books. He also has the unique ability to read area, such as the geography of western Europe.
two pages simultaneously, one with each eye, with Extreme examples of perseveration may be seen in
98 percent retention. individuals with autism, for whom repetitive hand
Peek met screenwriter Barry Morrow in Texas motions, rocking, or other movements are common
and astonished him with his mental abilities. Mor- characteristics. More typical examples in childhood
row decided to write a script inspired by Peek’s might involve singing a song from a video again
abilities; that script eventually evolved into Rain and again.
Man. The original script underwent a number of In a school setting, perseveration can be used
modifications; although Peek was the initial inspi- to describe the fixation on a specific element in a
ration for the story, Raymond Babbitt is a compos- broader task, such as spending all of the time of
ite savant with abilities drawn from a number of an exam on a single essay question. This type of
living individuals. behavior may be caused by inflexible strategies and
In preparation for playing the part of Raymond problems in shifting from one task to another.
Babbitt, actor Dustin Hoffman met Peek and his
father in February 1987. That day, according to
Peek’s father Fran, Kim shared with Hoffman facts pervasive developmental disorder–not otherwise
about British monarchs, the Bible, baseball, horse specified (PDD-NOS) A type of AUTISM SPECTRUM
racing, dates, times, places, composers, melodies, DISORDER characterized by significantly impaired
movies, geography, the space program, authors, social interactions or stereotyped behaviors with-
and literature. When Hoffman accepted his Oscar out all of the features of autism or ASPERGER’S
in March 1989, he thanked Kim Peek for “making SYDROME. Children with Asperger’s syndrome or
Rain Man a reality,” although Hoffman also spent PDD-NOS tend to function at a higher level than
124 pervasive developmental disorders

children with autism, and may be able to function spectrum disorders, the diagnosis is based upon
independently. the presence or absence of specific behaviors. For
If a diagnosis of PDD-NOS is made, rather than example, a child may be diagnosed as having PDD-
autism, the diagnosticians should clearly specify NOS if he or she has some behaviors that are seen
the behaviors present. Evaluation reports are more in autism, but does not meet the full criteria for
useful if they are specific and become more helpful having autism.
for parents and professionals in later years when
reevaluations are conducted.
Pervasive Developmental Disorders Screening
Test-II (PDDST-II) An easily administered assess-
pervasive developmental disorders (PDD) A ment tool designed to screen for several AUTISM
term used in the DSM-IV-TR for a group of disor- SPECTRUM DISORDERS, including AUTISTIC DISORDER,
ders that encompasses AUTISTIC DISORDER and simi- pervasive developmental delay, and ASPERGER’S SYN-
lar conditions, characterized by varying degrees of DROME, in children as young as 18 months. Designed
difficulty with communication skills, social inter- to be a parent-report screening measure, the test
actions, and restricted, repetitive and stereotyped helps to identify children with these problems in
patterns of behavior. The term is gradually being early childhood so that intervention can begin as
replaced with AUTISM SPECTRUM DISORDERS. The soon as possible. As such, it does not include a full
PDDs range from a mild form (ASPERGER’S SYN- description of early signs of autism but does reflect
DROME) to a severe form (AUTISTIC DISORDER). If a those early signs that can be reported by parents and
child has symptoms of either of these disorders, later correlated with a correct diagnosis.
but does not meet the specific criteria for either,
the diagnosis is called PERVASIVE DEVELOPMENTAL
DISORDER–NOT OTHERWISE SPECIFIED (PDD-NOS). phenolsulphertransferase (PST) deficiency The
The other two rare, very severe disorders that are theory that some children with autism have low
included in the autism spectrum disorders are RETT levels of sulphate, or an enzyme that uses sulphate
DISORDER and CHILDHOOD DISINTEGRATIVE DISORDER. called phenol-sulphotransferase-P. This means that
(More recently, many experts tend to exclude Rett these children will be unable to get rid of amines and
disorder from the autism spectrum disorders.) phenolic compounds once the body no longer has
Each of these disorders has specific diagnostic cri- any use for them. These compounds then remain in
teria as outlined by the Diagnostic and Statistical Manual their bodies and may cause adverse effects, includ-
of Mental Disorders (DSM-IV-TR). Autism (or autis- ing effects in the brain.
tic disorder) is the most common of the five PDDs,
affecting an estimated one in 250 births, according to Treatment Options and Outlook
the U.S. Centers for Disease Control and Prevention. Treatment for this condition involves dietary changes
Rett’s is the least common of the five. and EPSOM SALTS BATHS.
The term “pervasive developmental disorders”
was first used in the 1980s to describe a group of
disorders that shared symptoms or characteristics. physical therapy A series of treatments, including
Unfortunately, the term occasionally causes confu- exercise and massage, that are designed to improve
sion, because one of the disorders included under function of the body’s larger muscles through phys-
PDD has a very similar name—PDD-NOS (pervasive ical activities, thus improving strength, coordina-
developmental disorder–not otherwise specified). tion, and movement. Children with autism often
As a result, PDD and PDD-NOS are sometimes used have limited gross and fine motor skills, so physical
interchangeably. PDD has since been replaced by therapy can help improve function in these areas.
the more common term autism spectrum disorders. Specifically, physical therapists work on improv-
Since no medical tests can be performed to indi- ing a child’s gross motor skills, such as running,
cate the presence of autism or any other of the reaching, and lifting. Physical therapists also may
positive behavior support 125

work in conjunction with occupational therapists responsivity to multiple cues. Rather than teaching
to improve a child’s SENSORY INTEGRATION. thousands of behaviors one at a time, PRT concen-
See also OCCUPATIONAL THERAPY. trates on these pivotal behaviors. Experts believe
that PRT is able to increase the generation of new
skills while increasing the motivation of children to
pica The urge to eat nonfood items, such as dirt, perform these behaviors they are learning.
sand, paint, plaster, or paper. About 30 percent of PRT works on boosting motivation by giving chil-
children with AUTISTIC DISORDER have moderate dren choices, emphasizing taking turns, reinforcing
to severe pica. Pica can expose the child to heavy attempts, and interspersing maintenance tasks.
metal poisoning, especially if there is lead in the The product of 20 years of research from Rob-
paint or in the soil. ert and Lynn Koegel, cofounders of the Autism
Research Center at the University of California/
Santa Barbara, this approach helps improve a
picture exchange communication system See child’s communication and language skills, even
PECS. in extremely challenging cases, and fosters social
interactions and friendships with typically develop-
ing peers. PRT also reduces disruptive behaviors by
Pillault, Christophe (1982– ) French AUTISTIC combining functional assessment with self-man-
SAVANT in art who creates mystical paintings with agement strategies and is an aid to early identifica-
his hands, although unable to use his fingers or tion and intervention for autism. PRT also reduces
talk, walk, or feed himself. ritualistic behaviors, broadens a child’s interests,
Born in Iran to a French father and an Iranian and improves performance in school activities and
mother and now living in France, he discovered on homework.
painting in 1993, encouraged by his SPECIAL EDUCA- Because PRT works with each child’s natural
TION teacher and his mother, Jacqueline. Although motivations and stresses functional communication
he cannot speak, he expresses himself using acrylic over rote learning, this comprehensive model helps
on paper, canvas, and cardboard. His fingerprints children develop skills they can really use. How-
on the backs of his paintings are his signature. ever, research suggests that this treatment works
His haunting, mystical paintings of ethereal better with some children than others; studies are
beings were introduced to the United States in ongoing to try to pinpoint which children can best
1998 at the Mills Pond House Gallery in Smith- be helped by PRT.
town, Long Island; he also has exhibited and won
prizes throughout France, Italy, and Japan. One of
his paintings was featured on the cover of the 2003 positive behavior support (PBS) A broad approach
DAN! (Defeat Autism Now!) conference program; for resolving problem behaviors displayed by people
his art is also included in Art of the Mind, the per- with autism spectrum disorders, including SELF-INJU-
manent art collection of the M.I.N.D. Institute in RIOUS BEHAVIOR, aggression, tantrums, and repetitive
California. behaviors. It is based on and derived from the theory
of APPLIED BEHAVIOR ANALYSIS and many of the inter-
vention procedures are derived from this discipline.
pivotal response training (PRT) A behavioral PBS requires that procedures be positive and
treatment based on the principles of APPLIED BEHAV- respect the dignity of the person, featuring individ-
IOR ANALYSIS (ABA) that uses natural learning ualized interventions based on an understanding of
opportunities to alter certain behaviors in children the person and his or her environment. PBS inter-
with autism, improving communication, behav- ventions usually consist of more than one strategy
ior, and social skills. Researchers have identified and involve collaboration among more than one
two “pivotal behaviors” that affect a wide range of caregiver and support provider. PBS goals should
behavior in children with autism: motivation and include improvements in social relationships and
126 Prader-Willi syndrome

other lifestyle enhancements, as well as reductions Most individuals suffering from this disorder
in problem behavior. are missing a small portion of the critical genes on
The process begins with the formation of a sup- chromosome 15, which appears to come from the
port team, which consists of the most relevant paternal side of the family. A few individuals with
individuals in the person’s life, such as family mem- Prader-Willi are missing the entire chromosome
bers, teachers, and friends. The team members are from the father, inheriting instead two chromo-
usually responsible for implementing the positive some 15s from the mother. When a small portion
behavior support plan. of chromosome 15 is missing and comes from the
The next step is to establish an agreement on maternal side, the person may suffer from ANGEL-
the broad goals that a support plan should seek to MAN SYNDROME, another condition with some simi-
achieve. Once the support team defines their com- larities to autism.
mon vision, then a functional behavior assessment Occasionally (less than 2 percent of the time), a
is conducted, gathering information about the prob- genetic mutation that does not affect the parent is
lem behavior. Armed with the support plan and the passed on to the child, and in these families more
functional behavior assessment, the team writes a than one child may be affected. A similar disorder
positive behavior support plan that includes a num- can be acquired after birth if the hypothalamus is
ber of components: damaged through injury or surgery.

• strategies for teaching and increasing skills that Symptoms and Diagnostic Path
are intended to replace the problem behaviors Despite the similarities with autism as listed above,
• strategies for preventing the problems before the classical features of this disorder are quite dis-
they occur tinctive, and include an obsession with food often
associated with impulsive eating, compact body
• strategies for dealing with the problems if or build, underdeveloped sexual characteristics, and
when they do occur poor muscle tone. Signs of Prader-Willi may be seen
• strategies for monitoring progress at birth, with very small size and floppy muscles.
Infant boys may have undescended testicles. Because
As time goes on, the support team often meets to of their obsession with food, many people afflicted
evaluate progress and make adjustments to the with Prader-Willi syndrome are overweight. Most
plan, as necessary. individuals afflicted with this condition also have
mild MENTAL RETARDATION, and IQ seldom exceeds
80. However, children with Prader-Willi generally
Prader-Willi syndrome (PWS) A genetic disorder are very pleasant, happy, and smile frequently.
sometimes associated with (but not a subtype of)
AUTISTIC DISORDER because both conditions share some Treatment Options and Outlook
behaviors. These include language and motor devel- Recent studies have shown that growth hormone
opment delays; learning disabilities; feeding problems treatment can improve growth and decrease the
in infancy; sleep problems; obsessive-compulsive percent of body fat, as well as improve physi-
behaviors such as repetitive thoughts and verbaliza- cal strength and agility. A micropenis (very small
tions, collecting and hoarding of possessions, and skin penis) in the male infant may be corrected with a
picking; a strong need for routine and predictability; short course of testosterone. Hormone replacement
and a high pain threshold. Frustration or schedule can correct hypogonadism at puberty.
changes can easily trigger loss of emotional control The most effective form of treatment for mini-
in someone with PWS, ranging from tears to temper mizing difficult behaviors in people suffering from
tantrums to physical aggression. Prader-Willi syndrome is behavior modification,
Prader-Willi syndrome affects about one out of with careful environmental structuring and consis-
10,000 to 15,000 people—both males and females, tent use of positive behavior management and sup-
and all races. ports. In general, medications do not appear to be
prognosis 127

very effective for these individuals, although psy- higher-functioning people live in a supported-living
chotropic medications can help some patients. situation with modest assistance, and a very few are
With treatment, people with PWS can expect able to live independently. Some are able to work,
to graduate, get a job, and even move away from either in volunteer work, sheltered workshops, or
their family home. However, they do need a sig- private employment, but many do not. Although
nificant amount of support from their families each person with autism is different, in general peo-
and from school, work, and residential service ple with autism function best at highly structured
providers to achieve these goals while avoiding jobs featuring lots of repetition. These may include
obesity. Even individuals with normal IQ need computer operators, office workers, assembly line
lifelong diet supervision and protection from food workers, or employees at sheltered workshops.
availability. Adults with PERVASIVE DEVELOPMENTAL DISORDER–
In the past, many people with PWS died in ado- NOT OTHERWISE SPECIFIED (PDD-NOS) and ASPERG-
lescence or young adulthood, but today preventing ER’S SYNDROME generally are more likely to live
obesity can enable those with the syndrome to live independently, and they are more likely to work,
a normal life span. Ongoing research may provide although they often have trouble finding and
discoveries that will enable patients to live more maintaining a job. The major reason for chronic
independent lives. unemployment is not a lack of job skills, but rather
limited social skills. This is why it is important to
encourage appropriate social skills early in the life
pregnancy factors Pregnancy factors and preterm of children with autism, so they will one day be
delivery may be associated with the risk of autism, able to live and work as independently as possible.
according to a study supported in part by the Centers Some of the most successful people on the autism
for Disease Control and Prevention (CDC). Breech spectrum who have good jobs have developed
presentation at birth, delivery before 35 weeks, and expertise in a specialized skill that others value. If a
low birth weight at delivery are specific risk factors. person makes himself or herself very good at some-
The research, which involved national study of thing, this can help make up for some difficulties
all 698 Danish children with autism born after 1972 with social skills. Good fields for higher function-
and diagnosed before 2000, focused on perinatal ing people on the spectrum are architectural draft-
risk factors such as delivery and newborn charac- ing, computer programming, language translation,
teristics, pregnancy characteristics, and parental special education, library science, the sciences, and
characteristics, among other things. sometimes music. In fact, many experts believe
At present, the study only identifies possible that some brilliant scientists and musicians have a
associations. Additional research is needed to deter- mild form of Asperger’s syndrome. Individuals with
mine if the factors identified actually play a role in autism who are most successful often have good
causing autism. mentors either in high school, college, or on the job
who can help channel interests into careers.
Untreated sensory oversensitivity can severely
prognosis A prediction of the probable course and limit a person’s ability to tolerate a workplace envi-
outcome of a disease or ailment. How well a person ronment. Eliminating fluorescent lights will often
with autism is able to function can vary dramati- help, but untreated sound sensitivity has caused
cally, ranging from individuals who require nearly some individuals on the autism spectrum to quit
complete custodial care to those who can function good jobs because ringing telephones hurt their
independently. Adult independence can be linked ears. Some experts believe that sensory sensitivity
directly to both the severity of the disorder in the may be reduced by AUDITORY INTEGRATION TRAINING,
individual and the quality, quantity, and onset of diets, IRLEN LENSES, conventional psychiatric medi-
the treatment. cations, or vitamin supplementation.
Most adults with autism are either living at home Today, the educational and treatment options are
with their parents or living in a group home. Some much better than in the past and should continue to
128 prosopagnosia

improve in the future. However, it is often up to par- psychologist A mental health expert who spe-
ents to find those services, determine which are the cializes in the diagnosis and treatment of mental
most appropriate for their child, and ensure that they or emotional problems. A psychologist studies and
are properly implemented. Parents are a child’s most understands brain and behavior processes from a
powerful advocates and teachers. With the right mix scientific viewpoint and applies this knowledge
of interventions, most children with autism will be to help people understand, explain and change
able to improve and lead a happy, fulfilled life. behavior. Clinical psychologists often use a range
See also GRANDIN, TEMPLE. of assessment tools, including intelligence testing,
to assess, diagnose, and treat patients. Psychologists
can treat learning disabilities by helping the person
prosopagnosia A rare type of neurological condi- explore upsetting thoughts and feelings and help-
tion in which patients have special problems rec- ing find more positive ways to channel emotions.
ognizing human faces. Prosopagnosia is a form of They also develop standardized assessment tools to
agnosia—a condition in which patients fail to rec- measure behavior and therapeutic interventions
ognize objects even though they show no signs of to help people improve their ability to function as
sensory problems. Prosopagnosia has nothing to do individuals and in groups.
with a person’s ability to see faces—someone with A psychologist usually holds a doctoral degree
perfect vision can suffer from prosopagnosia. It is (Ph.D., Psy.D., or Ed.D.) from a university or pro-
also unrelated to the person’s IQ. fessional school. Generally, a psychologist in clini-
Experts believe that prosopagnosia occurs when cal practice will have a degree in clinical psychology
that special brain center dedicated to face recogni- (although it might be in counseling psychology).
tion becomes damaged or is otherwise unable to With the exception of the Psy.D. (a purely clini-
perform its function. Anecdotal evidence suggests cal degree), all psychologists have had extensive
that prosopagnosia is especially common in people training in research, having completed a doctoral
with autism and ASPERGER’S SYNDROME, but few sci- dissertation as a major part of the training. In fact,
entific studies have examined this aspect. Evidence the psychologist’s training in research is what most
suggests that individuals with prosopagnosia iden- distinguishes a psychologist from other providers
tify other people by observing their clothing, hair- of mental health treatment. In addition to research
styles, beards, gait, and voice. training, the psychologist will have completed one
Prosopagnosia was first observed and docu- or more clinical internships.
mented several hundred years before Christ, but it
was not named until 1947.
See also FACE RECOGNITION. psychologist, educational A Ph.D.-level mental
health expert who specializes in assessment and
consultation relating to educational issues, including
psychological evaluation A type of test that is the assessment of learning disabilities. Educational
sometimes used as part of a general assessment of psychologists use a range of assessment tools, includ-
an individual’s learning difficulties, especially when ing intelligence and academic achievement testing.
there are other significant behavioral, social, or Special educational needs, learning difficulties,
emotional elements involved. In cases where symp- dyslexia, behavior problems, and the guidance of
toms or behavior might indicate the presence of a gifted children all fall within the scope of the educa-
significant psychological problem, a psychological tional psychologist’s expertise. The educational psy-
evaluation may be necessary to determine whether chologist is qualified to give advice based upon expert
psychological or emotional factors may be involved assessment and observation of the child’s strengths
in an individual’s performance or behavior or to and weaknesses, drawing upon a knowledge of child
rule out such possible conditions as depression, psychology, child development, and education.
OBSESSIVE-COMPULSIVE DISORDER, or a personality Psychologists use a range of techniques to put
disorder. together a picture of the child’s strengths and dif-
Purkinje cells 129

ficulties and identify important factors affecting the ter’s degree plus 30 graduate credits. Many school
child’s learning and behavior. Individual tests of psychology programs across the country offer a
intelligence will give a profile of the child’s verbal specialist degree as well, which is a master’s degree
and nonverbal thinking skills and may identify spe- plus 30 credits. The specialist’s degree is an inter-
cific areas of strength and weakness that need to mediary degree between a masters and a Ph.D. In
be taken into account. Information is also gathered fact, most states require a specialist’s degree (or its
through structured classroom observation as well equivalent) in order to become certified as a school
as interviews with teachers and parents. Getting an psychologist. Training focuses on mental health,
objective picture helps understanding and provides child development, learning, and motivation.
a framework for discussing solutions to problems. There are several differences between a school
psychologist and a school counselor. Unlike school
psychologists, school counselors are not required to
psychologist, school A professionally trained have a master’s degree or a specialist’s degree. In
PSYCHOLOGIST who specializes in working with pre- addition, counselors are not trained or qualified to
school and school-age children, adolescents, and administer and interpret psychological and social-
their teachers and families to help make education emotional assessments, nor are they able to make
for students a positive and rewarding experience. educational diagnoses of handicapping conditions
School psychologists address many issues such as as required by federal law. Many counselors spend
crisis intervention, social skills training, behavioral their school day doing guidance in the classrooms.
management techniques, self-esteem, attention School psychologists usually must be certified
deficit disorders, post-traumatic stress disorders, in the state in which services are to be provided.
and special education regulations. A school psy- This can also be done at the national level through
chologist is also trained in counseling and crisis the National School Psychology Certification Board
intervention and is often involved in one-on-one (NSPCB) or the National Association of School Psy-
counseling and in group counseling with elemen- chologists (NASP). Each state has different require-
tary and high school students. ments, and not all states accept NSPCB, but all
In addition, school psychologists administer and states accept the NASP certification. They do not
interpret intelligence tests and achievement tests necessarily have to be licensed by the state as clini-
and complete social-emotional assessments (such cal psychologists (required to formally diagnose
as tests of personality, affect, or behavior problems). autism and other developmental disabilities and
They are primarily responsible in helping schools mental disorders).
make an educational diagnosis of learning disabili-
ties such as attention deficit disorder. One of the
main roles of the school psychologist is to adminis- Public Law 94-142 (Education for All Handi-
ter a variety of psychoeducational tests to students capped Children Act of 1975) A federal law that
who are experiencing academic or behavioral prob- provides funds to states that maintain certain stan-
lems in the classroom. Based on these test results dards in their education of handicapped children,
and information collected from the student’s teach- such as providing a free and appropriate education
ers and parents, the school psychologist helps the in a least restrictive environment. It was renamed
schools determine if a student is eligibile for special the INDIVIDUALS WITH DISABILITIES EDUCATION ACT
education services. (IDEA) in 1990.
School psychologists work with students who
have vastly different educational problems and
needs, including learning disabilities, traumatic brain Purkinje cells A type of brain cell that, when in
injuries, emotional and behavioral disorders, autism, short supply, may be related to autism. This link
intellectual disabilities, and developmental delays. was uncovered during autopsies on autistic people,
School psychologists earn a bachelor’s degree but the reason behind any such link is presently
followed by an advanced degree—usually a mas- unknown.
R
The Real Life Rating Scale (RLRS) A test used to lic education” for children with disabilities, Section
assess the effects of treatment on 47 behaviors of 504 of the Rehabilitation Act is intended to prohibit
people with autism, including motor, social, affec- discrimination against individuals with handicaps
tive, language, and sensory skills. The RLRS can be in programs receiving federal financial assistance.
used in everyday settings by nonprofessional raters. The RA is more general in scope, and its definition
of handicapped is somewhat broader than that of
the IDEA.
receptive language The forms of language that Unlike the IDEA, which applies primarily to
are received as input: listening and reading. Lis- public elementary and secondary education for
tening and reading are receptive skills that involve children with disabilities, the Rehabilitation Act
feeding information into the brain, as opposed to also applies to post-secondary institutions that
speaking and writing, which are the expressive receive federal funds in any form. To fall under the
forms of language. Most individuals maintain simi- protection of the RA, an individual must meet the
lar capacity for receptive and expressive, oral and definition of “handicapped” as defined in the act,
written language function, but those with learning be “otherwise qualified,” and be denied employ-
problems may have specific deficits in one or more ment or education “solely by reason” of the handi-
of these areas. capping condition. In addition, the act requires
that an employer or educational institution must
make “reasonable accommodations” for the handi-
refrigerator mother Slang term used in a pejora- capping condition.
tive way to describe mothers of autistic children.
The phrase was used in descriptions of the Freud- Eligibility
ian psychological theory of the cause of (infantile) Eligibility for Section 504 is based on the existence
autism, implying that emotionally distant, cold of an identified physical or mental condition that
mothers were the cause of autism in their chil- substantially limits a major life activity. As learn-
dren. This theory is no longer accepted as a cause ing is considered a major life activity, children
of autism. diagnosed with autistic disorder are entitled to the
protections of Section 504 if the disability is sub-
stantially limiting their ability to learn. Children
Rehabilitation Act of 1973 (RA), Section 504 A who are not eligible for special education may still
major piece of legislation requiring that schools be guaranteed access to related services if they meet
not discriminate against children with disabilities the Section 504 eligibility criteria.
(including AUTISTIC DISORDER) and that they provide
children with reasonable accommodations. Under Evaluation
some circumstances, these “reasonable accommo- Although Section 504 requires nondiscriminatory
dations” may include the provision of services. testing, there are far fewer regulations placed on
While the INDIVIDUALS WITH DISABILITIES EDUCA- the testing procedure than are required for IDEA.
TION ACT (IDEA) focuses on “free appropriate pub- In addition, unlike IDEA, Section 504 does not

130
Rett disorder 131

discuss the frequency of testing or the role outside repetitive behaviors Odd repetitive motions, such
evaluations may play nor require parental con- as repeatedly flapping the arms or toe walking, are
sent for testing. It does require that an evaluation a common symptom of autism and the AUTISM SPEC-
be conducted before a child receives a remedia- TRUM DISORDERS. These behaviors might be obvious
tion plan and before any changes are made to the or subtle.
plan. Repetitive behavior sometimes is expressed by
having a persistent, intense preoccupation. For
Section 504 Plan example, the child might be obsessed with learning
If the child is eligible for services under Section all about vacuum cleaners, train schedules, or light-
504, the school district must develop a “Section houses. Often there is great interest in numbers,
504 plan.” However, the regulations do not dictate symbols, or science topics. Children with autism
the frequency of review of the 504 plan, and do often spend hours lining up their cars and trains
not specify the right of parents to participate in its in a certain way instead of manipulating them in
development. pretend play. If someone accidentally moves one of
In general, Section 504 provides a faster, more the toys out of alignment, the child typically loses
flexible, and less stigmatizing procedure for obtain- control and gets extremely upset, because children
ing some accommodations and services for children with autism need and demand absolute consistency
with disabilities than IDEA. By virtue of the looser in their environment. A slight change in any rou-
eligibility criteria, some children may receive pro- tine, such as a later mealtime, a change in dress, or
tection who are not eligible for services or protec- going to school at a different time or by a different
tion under IDEA, and less information is needed to route can be extremely disturbing. Experts suspect
obtain eligibility. Thus, Section 504 can provide an that such a need for order and sameness may lend
efficient way to obtain limited assistance without some stability in a world of confusion.
the stigma and bureaucratic procedures attached
to IDEA.
There are some benefits under IDEA, however: residual state autism See INFANTILE AUTISM, RESID-
UAL STATE.
• a wider range of service options
• far more extensive procedures for parent partici-
Rett disorder (Rett syndrome) A rare, progres-
pation and procedural safeguards
sive disorder of developmental arrest that occurs
• far more specific degree of regulation than that almost exclusively in girls, producing autistic-like
found in Section 504 behavior, learning disabilities, poor muscle tone,
aimless hand-wringing movements, difficulty
If a child has behavioral problems that could lead expressing feelings, poor eye contact, seizures,
to the possibility of excessive discipline, suspen- slow brain and skull growth, shortened life expec-
sion, and expulsion, parents should be particularly tancy, and walking abnormalities. This condition
aware of the less rigorous safeguards provided by is considered to be one of the five disorders under
Section 504. the umbrella term AUTISM SPECTRUM DISORDERS
(ASD) as listed in the DSM-IV-TR. It is included as
an ASD because there is some potential confusion
relationship development intervention (RDI) A with autism, particularly in the preschool years.
new method for teaching children how to develop However, the course and onset of this condition
relationships, first with their parents and later are distinctive.
with their peers. The method focuses on teaching Although the gene mutation that causes Rett
the development of social skills and friendships, also occurs in some cases of autism, suggesting that
which is a core problem for most people with they are related conditions, Rett occurs mostly in
AUTISTIC DISORDER. girls, whereas autism occurs much more often in
132 Rett disorder

boys. Both conditions feature a loss of speech and areas are also critical to the normal development of
emotional contact, but Rett disorder also causes the cortex in late infancy; Rett destroys the brain
lagging head growth and loss of purposeful hand areas that control both movement and emotion.
skills and mobility (APRAXIA), which are not part of This probably occurs when subsets of brain cells and
autism. Girls with Rett enjoy affection and almost their synapses are disrupted during a very dynamic
always prefer people to objects, whereas children phase of brain development during the first few
with autism prefer objects to people. For these rea- months of life, when synapses are normally being
sons, many experts now no longer consider Rett overproduced, only to be trimmed back later to the
disorder to be a condition on the autism spectrum. normal adult number.
The syndrome, which is caused by a faulty X The specific genetic problem was discovered
chromosome, appears in about one of every 10,000 in 1999: a mutation of the MECP2 gene on the X
to 15,000 live female births. Once considered a chromosome. This mutation is found in up to 75
condition exclusively of girls, experts now believe percent of typical and atypical cases of Rett. Experts
that boys can have Rett disorder, but that in boys suspect that overproduction of these proteins trig-
the condition is usually fatal before birth. The dif- gers the nervous system deterioration characteristic
ference between boys and girls occurs because girls of the disease. The role of the MECP2 gene is to
have two X chromosomes, only one of which is silence other genes when they are no longer needed
active in any particular cell. This means that only in development. (Most genes are active for only a
about half the cells in a girl’s nervous system will specific period in development and then shut off
actually have the defective Rett gene. Because boys forever.) The MECP2 mutation makes the turn-off
have a single X chromosome, all of their cells must mechanism fail, allowing other genes to stay active
use the faulty version of the gene, which experts when they are no longer needed, and allowing pro-
believe results in fatal defects. teins and enzymes to build up and become toxic to
The condition was first described in 1954, when the central nervous system.
Viennese physician Andreas Rett first noticed this Mutations in MECP2 almost always occur sponta-
syndrome in two girls as they sat in his waiting neously rather than through heredity, which means
room, making the same repetitive hand-writhing that parents rarely pass on the disease to their chil-
motions. When he compared their medical histo- dren. The chance of having more than one child with
ries, he discovered striking similarities. Upon fur- Rett disorder is less than 1 percent, which means
ther investigation, he located six other girls with that more than 99 percent of the time, the mutation
similar symptoms among his patients. After filming is sporadic and is not repeated in a family.
these girls, he began traveling throughout Europe
looking for other similar children. Symptoms and Diagnostic Path
At about the same time, Swedish physician Although rarely fatal in girls, Rett disorder never-
Bengt Hagberg noticed his young female patients theless causes permanent impairment. Individuals
who shared similar symptoms. In 1966, Dr. Rett with Rett disorder often experience autistic-like
published his findings in several German medical behavior in the early stages. Other symptoms may
journals, followed by a description of the disease in include toe walking, sleep problems, wide-based
English in 1977. Finally, in 1983 an article on the gait, teeth grinding and difficulty chewing, slowed
disorder appeared in the Annals of Neurology writ- growth, seizures, cognitive disabilities, and breath-
ten by Dr. Hagberg, who honored its pioneering ing difficulties such as hyperventilation, breath
researcher by naming the condition Rett disorder. holding, and air swallowing. It is difficult to deter-
Rett is classified as a developmental disease mine the IQ of a child with Rett disorder because
because it does not cause the brain to degenerate. of the apraxia and lack of verbal communication
Instead, it interferes with the maturation of cer- skills, since most traditional testing methods require
tain areas of the brain that control basic processes, speech and the use of the hands.
including the frontal, motor, and temporal cortex; Apraxia is a fundamental and severely handi-
brainstem; basal forebrain; and basal ganglia. These capping aspect of the condition that can interfere
Rett disorder 133

with all types of movement, including eye gaze and The last stage, Stage IV—called the late motor
speech. Some children start to use single words and deterioration stage—can last for years or decades
word combinations before they lose this ability. and is characterized by problems in walking. Mus-
There are four stages of Rett disorder, which cle weakness, rigidity, spasticity, and scoliosis are
usually begins in early childhood and follows an other prominent features. Girls who were previ-
irreversible course. Typically, the child develops ously able to walk may stop walking. Generally,
normally for the first months of life. there is no decline in cognition, communication, or
Stage I (early onset) generally begins between hand skills in Stage IV. Repetitive hand movements
six and 18 months of age and often is overlooked may decrease, and eye gaze usually improves.
because symptoms may be somewhat vague, and A girl’s problems may include seizures, which
parents and doctors may not notice the subtle slow- can be severe, although they tend to become less
ing of development at first. The infant may begin intense in later adolescence. Disorganized breathing
to show less eye contact and lose interest in toys. patterns also may occur, but this too will improve
There may be delays in gross motor skills such as with age. Mild to severe scoliosis is a prominent
sitting or crawling. Hand-wringing and decreasing feature of girls with Rett disorder.
head growth may occur, but not enough to draw In the past, diagnosing the disorder before age
attention. This stage usually lasts for a few months four or five years old was difficult, and so the con-
but can persist for more than a year. dition was often misdiagnosed as autism, cerebral
Stage II (the rapid destructive stage) usually palsy, or nonspecific developmental delay. But
begins between ages one and four and may last for the discovery of the genetic mutation has led to a
weeks or months. This stage may begin quickly or genetic blood test that can improve the accuracy of
more slowly, as purposeful hand skills and spoken early diagnosis.
language are lost. The characteristic hand movements The first step in getting a diagnosis is to get the
begin to emerge during this stage and often include blood test for the malfunctioning gene. There are
wringing, washing, clapping, or tapping, as well as more than 100 mutations in the MECP2 gene that
repeatedly moving the hands to the mouth. Hands causes Rett, and mutations have been found in
are sometimes clasped behind the back or held at the more than 80 percent of girls who match the diag-
sides, with random touching, grasping, and releas- nostic criteria for the disorder. For the remaining
ing. The movements persist while the child is awake 20 percent who do not appear to have an MECP2
but disappear during sleep. Breathing irregularities mutation yet do exhibit the symptoms, experts sus-
such as episodes of apnea and hyperventilation may pect that their mutations are located in a part of the
occur, although breathing is usually normal during very large MECP2 gene not yet screened. At pres-
sleep. Some girls at this stage also display autistic- ent, it is possible to have Rett with a negative blood
like symptoms such as loss of social interaction and test. And because researchers now understand that
communication. There may be general irritability the MECP2 mutation also causes other disorders, it
and sleep irregularities, with unsteady gait and prob- is possible to have the MECP2 gene mutation and
lems initiating motor movements. Slowing of head not have Rett disorder.
growth is usually noticed during this stage. After the blood test has been taken, the doctor
Stage III (the plateau or pseudo-stationary will assess the child’s early growth and develop-
stage) usually begins between ages two and 10 and ment, evaluate the medical history, and check the
can last for years. Apraxia, walking problems, and child’s physical and neurological signs. To come up
seizures are prominent during this stage. However, with a diagnosis, specialists use a Rett disorder diag-
there may be improvement in behavior, with less nostic criteria worksheet that outlines one of three
irritability, crying, and autistic-like behavior. An categories: classic Rett disorder, provisional Rett,
individual in Stage III may show more interest in and atypical Rett.
her surroundings, and her alertness, attention span, There are several different types of Rett disorder.
and communication skills may improve. Many girls Classical Rett disorder is diagnosed in those chil-
remain in this stage for most of their lives. dren who meet all the diagnostic criteria guidelines.
134 risperidone

“Provisional” Rett is diagnosed in a child if there demic, social, vocational, and support services may
is some evidence of symptoms between ages one also be required in some cases.
and three. “Atypical Rett syndrome” is diagnosed Predicting the severity of Rett disorder in any
if symptoms begin earlier (soon after birth) or later child is not easy, but in spite of the severe prob-
(beyond 18 months of age, sometimes as late as age lems this condition causes, most girls with Rett
three or four), speech and hand skill abnormalities survive at least into their 40s. Most girls can learn
are milder, or it is found in a boy (very rare). to use the toilet and many can learn to feed them-
Other conditions mimic Rett disorder and must selves by hand or with utensils with some assis-
be ruled out, including Angelman syndrome, tance. Some girls can learn to use assistive devices
PRADER-WILLI SYNDROME, metabolic disorders, stor- to communicate.
age diseases, mitochondrial disorders, and Batten Girls and women with Rett can continue to learn
Disease. and have fun with family and friends well into mid-
Genetic testing is also available for sisters of dle age and beyond, experiencing a full range of
girls with Rett disorder and an identified MECP2 emotions as they participate in social, educational,
mutation to determine if they are asymptomatic and recreational activities.
carriers of the disorder, which is an extremely rare
possibility.
risperidone (Risperdal) An antipsychotic drug
Treatment Options and Outlook found effective for the treatment of tantrums,
There is no cure for Rett disorder, but there are sev- aggression, or self-injurious behavior in children
eral treatment options, including behavioral train- with AUTISTIC DISORDER. However, scientists cau-
ing to teach communication and other functional tion that side effects and the lack of a clear benefit
skills, and medication for seizures that may occur. with regard to core symptoms of autism indicate
In addition, the child should be monitored for scoli- that risperidone should be reserved for treatment
osis and possible heart abnormalities. Occupational of moderate-to-severe behavioral problems associ-
therapy can help children develop skills needed for ated with the disorder.
self care, such as dressing and feeding; physiother- This medication works by blocking brain recep-
apy and hydrotherapy may prolong mobility. tors for dopamine and serotonin, two chemical
Some children may need special equipment and messengers in the brain, and has been found to be
aids such as braces to treat scoliosis, splints to mod- effective in treating adults with schizophrenia. How-
ify hand movements, and nutritional programs to ever, there are few large studies on the safety and
help them maintain adequate weight. Special aca- efficacy of antipsychotics in children with autism.
S
safety issues Living with a person with autism parents place the lock key above the doorframe of
means that difficult behaviors can make safety a the room to have quick access.
lifelong problem. An individual with autism may Poisonous items must also be locked away,
engage in a wide variety of unsafe behaviors, including detergents, chemicals, cleaning supplies,
including climbing, throwing or breaking items, pesticides, medications, and small items that a child
jumping, sweeping items off surfaces, dumping may mouth or chew.
drawers and bins, and climbing out of or breaking
windows. In addition, people with autism may put Safeguard Windows
items in appliances, flush things down the toilet, Specialized window locks will prevent a child from
touch a stove burner, turn on hot faucets, insert climbing out the window. If a child breaks glass or
items into electrical sockets, chew on wires, play pounds windows, the glass should be replaced with
with matches, or crawl in a washer or dryer. Plexiglas to prevent injury. Some parents place
Because children with autism do not understand wooden boards over windows to prevent injury or
the results of their actions, it becomes very impor- escape.
tant to make sure the home is as safe and protected
as possible. Electrical Outlets and Applicances
Electrical outlets should be covered or removed and
Arrange the Furniture plastic knob covers used for doors, faucets, ovens,
If a child often runs out of a room along the same and stove burners. The door to the washer or dryer,
route, the furniture should be arranged so the child appliances, or power tools should be locked. All
is unable to escape. Furniture should be moved wiring for appliances and electronics must be con-
away from shelves or places where the child may cealed; individuals with autism are curious about
climb, and surfaces should be kept clear. Items how things work and are unaware of dangerous
should be kept out of reach on shelves or locked situations.
away, and gates can prevent falls down steps.
Eating Utensils and Place Settings
Locks If a child typically throws utensils, forks and spoons
Locks should be placed on exterior doors to pro- can be tied with nylon string and attached to the
tect individuals who run away or leave the home chair or leg of the table. If the child throws or sweeps
without supervision. Locks also should be placed plates, bowls, and cups, these items can be fastened to
on interior doors and on cabinets to which the indi- the table with Velcro. Plastic or rubber plates, bowls,
vidual should not have free access. and cups should be used to prevent shattering.
If parents need to prevent wandering at night,
locks on the child’s bedroom door must be able to Social Safety Stories
open with a keyhole/key, a hook-and-eye lock, or a Parents can develop SOCIAL STORIES with photo-
slide-bolt. It is imperative that parents have imme- graphs, pictures, and words about the purpose of
diate access to the room where the door is locked in smoke detectors, fire drills, fire alarms, the impor-
the event of fire, flood, or other emergency. Some tance of avoiding fire, and so on. (A social story is a

135
136 savant syndrome

short, personalized tale that explains the subtle cues 6:1 ratio. Typically, savant skills appear in one of
in social situations and breaks down a situation or six areas: calendar calculating; lightning calculating
task into easy-to-follow steps.) Parents should read and mathematical ability; art (drawing or sculpt-
the stories to the child on a regular basis. Photos or ing); music (usually piano); mechanical abilities;
pictures can help the child understand what they and spatial skills. A few individuals exhibit unusual
should or should not do. language abilities.
Other skills much less often reported include
map memorizing, visual measurement, extrasen-
savant syndrome A condition in which a person sory perception, and enhanced sense of touch and
with a developmental disability (such as AUTISTIC smell. The most common savant skill is musical
DISORDER) exhibits unusual areas of brilliant abil- ability; a combination of musical genius, blindness,
ity. Savant syndrome is rare, however; only one and autism is not unusual. In some cases, the indi-
out of ten people with autistic disorder have any vidual has a single special skill, while others exhibit
savant abilities at all. Still, although only 10 percent several skills—but whatever the skill, it is always
have some savant abilities, that percentage is much linked with an incredible memory.
higher than for people with other developmental There are a variety of theories to explain savant
disabilities (one in 2,000). syndrome, although no one has been able to trace
Some people with autism have particular savant the origin of the talent precisely. The unusual skill
skills that are remarkable only in contrast to the could be due to genetics or to a lack of ability to
handicap (called “talented savants”). A few others think abstractly. Newer imaging studies reveal left
with a much rarer form of the condition exhibit a hemisphere damage in savants, which suggests
brilliant ability not just unusual in contrast to the that the most plausible explanation for savant
handicap, but so outstanding it would be incredible syndrome might be left brain damage with right
even if the skill was exhibited by a nonautistic per- brain compensation. It is not surprising that many
son (called “prodigious savant”). There are fewer savants struggle with language and comprehen-
than 100 reported cases of prodigious savants in the sion skills (primarily left brain functions), but
world. The character played by Dustin Hoffman in often have amazing skills in music, mathematics,
the movie Rain Man was a prodigious savant who and calculation (primarily right brain skills). This
displayed incredible memory feats. Real-life prodi- right brain compensation could be coupled with
gious savants include Leslie Lemke (music), Kodi corresponding damage to higher level cognitive
Lee (piano), Alonzo Clemens (sculpting), Richard memory, so that lower level, habit memory takes
Wawro (painting), Stephen Wiltshire (drawing), over.
and Tony DeBlois (music). DeBlois, for example, Whatever the cause, once established, the skills
can play 20 instruments and has committed an esti- are typically enhanced by intense concentration,
mated 8,000 songs to memory. practice, and reinforcement by family and teach-
The condition was first named “idiot savant“ in ers. However, not all autistic savants function at
1887 by J. Langdon Down, M.D. (who also gave a high level; the disorder consists of a spectrum
his name to a syndrome of MENTAL RETARDATION of disability ranging from profoundly impaired to
known as Down syndrome). In the 19th century, high functioning. For many years experts were
the word “idiot” was an accepted classification of afraid that helping a savant achieve a higher level
mental retardation (IQ below 25), and the word of functioning with treatment would trigger a
“savant” was derived from the French word savoir loss of special skills. That has not turned out to
(“to know”). Today the term “idiot savant” has been be the case. Instead, training the talented savant
abandoned because of its negative connotations. increases socialization, language, and indepen-
The condition can be congenital (often linked dence. In fact, the special skills of the savant can
to premature birth) or acquired in an otherwise become a treatment tool. Some schools include
normal individual after brain injury or disease. children with savant syndrome in classes for the
It occurs in boys more often than girls in about a gifted and talented.
screening instruments for autism 137

school programs for autism Early intervention time, developing headaches or feeling dizzy. Some
programs are available for children younger than experts believe that some individuals’ visual sys-
age three; children over age three are eligible for tems are excessively stimulated by a high contrast
preschool and school programs. In some cases, a between black print on a white background, which
separate program for special needs children may thus interferes with the reading process. Transpar-
be the best choice for an autistic child. For higher- encies or overlays are used to reduce these prob-
functioning children with autism, integration into a lems while reading. A colored overlay, such as a
regular school setting may be more appropriate, as light blue transparency placed over the text, will
long as there is enough support (such as an aide). reduce the contrast between black and white as
It is important that parents work with their well as reduce the dominance of the white back-
child’s teacher on an INDIVIDUALIZED EDUCATION ground. The best color of the transparency depends
PROGRAM (IEP), which outlines in great detail what on each person’s unique visual-perceptual system.
specific steps will be taken to help educate the child. In addition to reading problems, people with
Additionally, meeting with the child’s classmates scotopic sensitivity may have trouble perceiving
and/or their parents can be helpful in encouraging their surroundings. Some of these autistic indi-
other students to interact positively with the autis- viduals have reported improvements after wearing
tic child. special tinted glasses prescribed by Helen Irlen at
In some states, home therapy programs (such one of her 76 diagnostic clinics located around the
as APPLIED BEHAVIOR ANALYSIS or speech therapy) world. These individuals report seeing better, feel-
may be funded by the school district, rather than ing more relaxed, being less bothered by sunlight
through the state. However, it may take consider- or indoor lighting, and/or having fewer perceptual
able effort to convince the school district to provide distortions, which can affect small and gross motor
those services. coordination.

scotopic sensitivity syndrome A visual-perceptual screening instruments for autism A group of


problem that occurs in some people with AUTISTIC DIS- tests developed to quickly gather information
ORDER, characterized by a variety of perceptual distor- about a child’s social and communicative develop-
tions when reading or looking at their environment. ment within medical settings that are used to help
Scotopic sensitivity is triggered by one or more com- diagnose autism. These tests include the CHILDHOOD
ponents of light, such as the source (for example, AUTISM RATING SCALE, the CHECKLIST FOR AUTISM
fluorescent lighting or the sun), reflection or glare, IN TODDLERS, the modified Checklist for Autism in
brightness, color, or color contrast. As a result, an Toddlers, the Screening Tool for Autism in Two-
afflicted person may experience light sensitivity; inef- Year-Olds, and the SOCIAL COMMUNICATION QUES-
ficient reading; difficulty with high contrast; tunnel TIONNAIRE (SCQ) (for children four years of age and
vision or difficulty reading groups of letters; and prob- older).
lems maintaining attention. During the last few years, additional screen-
The IRLEN LENS system, developed by Helen Irlen, ing instruments have been designed specifically to
was designed to treat scotopic sensitivity, using check for ASPERGER’S SYNDROME (AS) and higher
two methods: the use of colored transparencies or functioning autism. These tests include the autism
overlays to improve reading, and tinted glasses to spectrum screening questionnaire (ASSQ), the
improve visual perception. Australian scale for Asperger’s syndrome, and the
For some people, letters or words on a page CHILDHOOD ASPERGER’S SYNDROME TEST. These tests
may appear to move, vibrate, or jiggle. The white concentrate on social and behavioral impairments
background may overtake and dominate the per- in children without significant language problems.
son’s perceptual system, and the black print of A “well-child” check-up should include one of these
the text may fade into the background. People developmental screening tests. If a child’s pediatri-
may also have trouble reading for a long period of cian does not routinely check the child with such
138 screening instruments for autism

a test, parents should ask that it be done. Autism a seven-point scale, the examiner indicates the
can be difficult to detect in very young children, degree to which the child’s behavior deviates from
yet early identification is critical because those who that of a normal child of the same age. A total score
receive early treatment have the best prognosis is computed by summing the individual ratings on
over the long term. each of the 15 items. Children who score above a
If a screening test suggests the possibility of one given point are categorized as autistic, and can be
of the autistic spectrum disorders (ASDs), a second subcategorized as mild-to-moderate or severe.
round of diagnostic tests are begun that are more
comprehensive and can accurately rule in or rule The Checklist for Autism in Toddlers (CHAT)
out an ASD or other developmental problem. This A simple screening tool used by pediatricians to
evaluation may be done by a multidisciplinary team screen for autism at 18 months of age, CHAT was
that includes a PSYCHOLOGIST, a NEUROLOGIST, a psy- developed in the United Kingdom by Simon Baron-
chiatrist, a speech-language therapist, or other pro- Cohen in the early 1990s. This test features a short
fessionals who diagnose children with ASD. Because questionnaire with two sections, one prepared by
ASDs are complex disorders that may involve other the parents and the other by the child’s family doc-
neurological or genetic problems, a comprehensive tor or pediatrician.
evaluation should include neurologic and genetic Section A of the CHAT is a self-administered
assessment, along with in-depth cognitive and lan- questionnaire for parents, with nine “yes or no”
guage testing. In addition, tests developed specifi- questions addressing rough and tumble play, social
cally for diagnosing autism are often used. These interest, motor development, social play, pretend
include the AUTISM DIAGNOSTIC INTERVIEW–REVISED play, pointing to ask for something, functional play,
(ADI-R) and the AUTISM DIAGNOSTIC OBSERVATION and showing. Section B of the CHAT consists of five
SCALE (ADOS-G). items recorded by the physician who observes the
child. The five items address the child’s eye contact,
Childhood Autism Rating Scale (CARS) ability to follow a point given by another person,
This assessment, which is based on observed behav- pretend play, ability to point to an object, and abil-
ior of children over age two, was developed in the ity to make a tower of blocks. Children are consid-
early 1970s by Eric Schopler and the Treatment ered likely to have autism if they fail the CHAT at
and Education of Autistic and Related Communi- 18 months and fail again at 19 months. It is esti-
cation Handicapped Children (TEACCH) program mated that consistent failure in three key areas
staff in North Carolina to formalize observations of (pointing, gaze monitoring, and pretend play) at 18
the child’s behavior throughout the day. Using a months indicates a greater than 80 percent risk of
15-point scale, professionals evaluate a child’s rela- having autism.
tionship to people, body movements, adaptation to
change, listening response, and verbal communica- Modified Checklist for Autism
tion. This test helps to identify children with autism in Toddlers (M-CHAT)
and to distinguish them from developmentally dis- Because of the poor sensitivity of the original CHAT
abled children who are not autistic. a Modified Checklist for Autism in Toddlers (M-
Brief, convenient, and suitable for use with any CHAT), consisting of 23 questions, with nine ques-
child older than two, the CARS makes it much tions from the original CHAT and an additional 14
easier for clinicians and educators to recognize and addressing core symptoms present among young
classify autistic children. Developed over a 15-year autistic children, was designed in the United States.
period, CARS includes items drawn from five prom- The original CHAT observational part (section B)
inent systems for diagnosing autism. Each item cov- was omitted.
ers a particular characteristic, ability, or behavior. The simpler M-CHAT, developed by Marianne
After observing the child and examining relevant Barton, Diana Robins, and Deborah Fein, asks par-
information from parent reports and other records, ents to rate how their child usually behaves. The M-
the examiner rates the child on each item. Using CHAT was designed as a simple, self-administered,
screening instruments for autism 139

parental questionnaire for use during regular pediat- off points. The score identifies children who may
ric visits. The more questions a child fails, the higher have autism and should be referred for a more
his or her risk of having autism. complete evaluation, using the Autism Diagnostic
Researchers found that M-CHAT was more sen- Interview–Revised or the Autism Diagnostic Obser-
sitive in identifying children with autism than the vation Schedule.
original CHAT because children up to age 24 months The “current” form looks at the child’s behavior
were screened, with the aim of identifying those over the most recent three months and produces
who might regress between 18 and 24 months. results that can be helpful in treatment planning,
The original CHAT was administered during the 18 educational intervention, and measurement of
month checkup. The six most relevant questions of change over time.
the M-CHAT address the following: interest in other In addition to its screening and educational
children, imitation, protodeclarative pointing, gaze applications, the SCQ can also be used to compare
monitoring, bringing objects to show parents, and symptom levels of different groups, such as chil-
responses to calling. Joint attention was addressed dren with developmental language disorders or
in the original CHAT, whereas the other areas were youngsters with medical conditions typically asso-
addressed only in the M-CHAT. ciated with ASDs.
Because this screening test is short, easily
Screening Tool for Autism administered, and relatively inexpensive, it allows
in Two-Year-Olds (STAT) clinicians and educators to routinely screen chil-
This test, developed by Wendy Stone, uses direct dren for ASD.
observations to study behavioral features that seem
to indicate autism in children under age two, focus- Autism Spectrum Screening Questionnaire (ASSQ)
ing on three skills areas (play, motor imitation, and This ASD screening questionnaire includes 27 state-
joint attention). ments replied to with “no,” “somewhat,” or “yes,”
The STAT is a play-based screening tool in which and includes statements such as: “Is regarded as
the examiner presents 12 activities to the child. The eccentric professor by other children” and “Expresses
activities assess the child’s play, communication, sounds involuntarily, clears throat, grunts, smacks,
and imitation skills, as these are common difficul- cries, or screams.”
ties for young children with autism. There is a scor- The ASSQ is a useful brief screening device for
ing cutoff that indicates whether a child is at risk identifying autism spectrum disorders, by assessing
or not at risk for an autism diagnosis. An “at risk” symptoms characteristic of Asperger’s syndrome and
score indicates the need for further evaluation. other high-functioning autism spectrum disorders in
children and adolescents with normal intelligence or
Social Communication Questionnaire (SCQ) mild mental retardation. Data for parent and teacher
Previously known as the Autism Screening Ques- ratings in a clinical sample are presented along with
tionnaire, this assessment features a 40-item screen- various measures of realibility and validity.
ing scale that has been used with children aged four
and older (with a mental age of at least two years) Australian Scale for Asperger’s Syndrome
to help evaluate communication skills and social This screening tool includes 24 questions responded
functioning. Designed by Michael Rutter, M.D., to on a six-point scale from “rarely” to “fre-
Anthony Bailey, M.D., and Catherine Lord, Ph.D., it quently”; five items are answered yes or no. Zero
is available in a “lifetime” and “current” form, each is the expected response; two to six indicates the
composed of 40 “yes or no” questions. Both forms posibility of AS. The questionnaire of 25 items is
can be given directly to the parent or physician, who designed to identify behaviors and abilities indica-
can answer the questions without supervision. tive of Asperger’s syndrome in children during their
The “lifetime” form focuses on the child’s entire primary school years. This is the age at which the
developmental history to come up with a total unusual pattern of behavior and abilities is most
score that is interpreted in relation to specific cut- conspicuous.
140 secretin

Childhood Asperger’s Syndrome Test (CAST) the brain made worse by lack of sleep or high fever,
Far too often, Asperger’s syndrome is identified can produce a temporary loss of consciousness (a
much too late; it should be possible to identify the “blackout”), unusual movements, staring spells, or
condition in elementary school children ages five to convulsions.
11. The Autism Research Centre developed CAST
to screen for Asperger’s syndrome and related Symptoms and Diagnostic Path
social and communication conditions in children People with autism may experience seizures that
aged four to 11 years in a nonclinical setting. This can range from mild (gazing into space for a few
38-item yes/no screening measure is designed for seconds) to severe, grand mal seizures. Many autis-
parents to answer about their children, and is based tic individuals have subclinical seizures that are not
on the core features of the autism spectrum disor- easily noticeable, but which can significantly affect
der. If parents suspect an autism spectrum disorder, mental function.
they can complete this test, and take it to their pri- An electroencephalogram (EEG), which records
mary care provider. Authors are Fiona Scott, Simon the electric currents developed in the brain via elec-
Baron-Cohen, Patrick Bolton, and Carol Brayne. trodes applied to the scalp, can help confirm sei-
zures. A short one- or two-hour EEG may not be
able to detect any abnormal activity, so a 24-hour
secretin A hormone produced by the small intes- EEG may be necessary.
tine that helps in digestion. Currently, the U.S.
Food and Drug Administration (FDA) approves a Treatment Options and Outlook
single dose of secretin only for use in diagnosing In most cases, anticonvulsant medications can help
digestive problems; there are no data on the safety stabilize brain activity and control both the seizures
of repeated doses over time. and some of the behavioral problems typical of
In the 1990s, news reports described a few per- autism. However, these drugs require regular blood
sons with autism whose behavior improved after testing in order to ensure that liver or bone marrow
receiving secretin during a diagnostic test, includ- damage does not occur.
ing improvements in sleep patterns, eye contact, Valproate (Depakote) is a common anticonvul-
language skills, and alertness. sant drug that can lessen seizures; most of the side
However, a series of clinical trials found no differ- effects (such as a sedative effect and an upset stom-
ence in improvement between those taking secre- ach) are not severe. However, in rare cases, Depak-
tin and those taking placebo, according to studies ote can cause liver damage, so frequent blood tests
supported by the National Institute of Child Health are required to monitor the level of this drug in the
and Human Development and the Network on the blood. Carbamazapine (Tegretol) is another antiepi-
Neurobiology and Genetics of Autism: Collabora- leptic medication that has the same benefits as Depa-
tive Programs of Excellence in Autism (CPEAs). In kote. This drug may cause a rash or bone marrow
fact, of the five case-controlled clinical trials pub- problems. While medications can be used to reduce
lished on secretin, none showed secretin perform- seizure activity, a child’s health must be checked
ing any better than placebo, no matter what the regularly because these drugs can be harmful.
dosage or frequency. For this reason, the FDA does There is also some evidence that certain nutritional
not recommend secretin as a treatment for AUTISM supplements, such as vitamin B6 and dimethylglycine
SPECTRUM DISORDERS. (DMG), can provide an alternative to drugs.
See also EPILEPSY.

seizures As many as one quarter of all individu-


als with autism experience seizures, some in early self-injurious behavior Any behavior that dam-
childhood and others as they go through puberty ages the person’s own tissues, such as that which
(changes in hormone levels may trigger seizures). causes bruises, redness, and open wounds. Indi-
Seizures, caused by abnormal electrical activity in viduals with AUTISTIC DISORDER sometimes engage
sensory integration dysfunction 141

in this type of extreme behavior, including head- PIST A. Jean Ayres, Ph.D., who was interested in
banging, hand-biting, and excessive scratching or the way in which sensory processing and motor
rubbing. planning disorders interfere with daily life func-
Some forms of self-injury may be caused by tion and learning. This theory has been developed
overarousal (such as frustration), so that the self- and refined by the research of Dr. Ayres, as well as
injury acts as a release, subsequently lowering the other occupational and PHYSICAL THERAPISTS.
arousal. In other cases, self-injury may be a form Children with sensory integration problems may
of repetitive, ritualistic behavior that provides some have trouble using a pencil, playing with toys, or
form of sensory stimulation or arousal. taking care of personal tasks, such as getting dressed.
Some children with this problem are so afraid of
movement that ordinary swings, slides, or jungle
sensorimotor This term pertains to brain activity gyms trigger fear and insecurity. On the other hand,
other than cognition or automatic functions such some children whose problems lie at the opposite
as breathing, circulation, and sleep. Sensorimotor extreme are uninhibited and overly active, often
activity includes voluntary movement and senses falling and running headlong into dangerous situa-
like sight, touch, and hearing. tions. In each of these cases, some clinicians believe
a sensory integrative problem may be an underlying
factor. Its far-reaching effects can interfere with aca-
sensory integration The process of taking in sen- demic learning, social skills, even self esteem.
sory information, organizing this information in the However, the concept of sensory integration is
central nervous system, and using the information to not well accepted in the medical community, and
respond appropriately in order to function smoothly there is no peer-reviewed research supporting sen-
in daily life. Sensory integration is a continual pro- sory integration therapy.
cess as the central nervous system matures. See also SENSORY INTEGRATION DYSFUNCTION.
Individuals with autism frequently have unusual
responses to various forms of sensory input. Autistic
children may seek out unusual amounts of certain sensory integration dysfunction A controversial
types of sensations (referred to as self-stimulation) theory that hypothesizes inefficient brain process-
but be extremely hypersensitive to others. Improv- ing of information received through the senses.
ing sensory processing may help some of these chil- Many individuals with autism appear to have
dren develop more productive contacts with people trouble detecting, discriminating, or integrating
and environments. sensations. This complex neurological problem is
Sensory experiences include touch, movement, thought to lead to either sensory seeking or sen-
body awareness, sight, sound, and the pull of gravity. sory avoiding patterns, or a motor planning prob-
As the brain organizes and interprets this informa- lem called dyspraxia.
tion, it provides a crucial foundation for later, more
Sensory Seekers
complex learning and behavior. For most people,
effective sensory integration occurs automatically These children are thought to have nervous systems
and unconsciously, without effort. For others, how- that do not always process sensory input that is sent
ever, the process is inefficient, demanding effort and to the brain. As a result, they respond too strongly
attention with no guarantee of accuracy. to sensations. Children who are underresponsive to
Sensory integration normally develops in the sensation seek out more intense or longer duration
course of ordinary childhood activities. But for sensory experiences. They may
some children with autism, some clinicians believe
that sensory integration does not develop as effi- • be hyperactive as they seek more and more
ciently as it should. movement input
The concept of sensory integration comes from • be unaware of touch or pain, or touch others too
a body of work developed by OCCUPATIONAL THERA- often or too hard (may seem aggressive)
142 sensory problems

• engage in unsafe behaviors, such as climbing too grative approach. Most children tend to seek out
high activities that provide the best sensory experiences
• enjoy sounds that are too loud, such as TV or at that particular point in their development. It is
radio volume this active involvement and exploration that enable
the child to become a more mature, efficient orga-
Sensory Avoiders nizer of sensory information.
At the other end of the spectrum are those children
who are thought to have nervous systems that feel
sensation too easily or too much so that they are sensory problems Many children with AUTISM
overly responsive to sensation. As a result, they may SPECTRUM DISORDERS are extremely sensitive to
have “fight or flight” responses to sensation, a con- sounds, textures, tastes, light, temperature, or
dition called “sensory defensiveness.” They may smells. For some of these children, the feel of
clothes touching their skin is almost unbear-
• respond to being touched with aggression or able. For others, some sounds (a vacuum cleaner,
withdrawal a ringing telephone, a sudden storm, even the
• be afraid of, or become sick with, movement and sound of waves lapping the shoreline) are so
heights painful that they cover their ears and scream.
These problems can involve not only hypersen-
• be very cautious and unwilling to take risks or sitivity but hyposensitivity to stimulation as well,
try new things so that a broken bone will not elicit a whimper,
• be uncomfortable in loud or busy environments but a light touch can make the child scream with
such as sports events or malls alarm. Others are hyposensitive and have a high
• be very picky eaters or overly sensitive to food tolerance to pain.
smells Normal perceptions allow children to learn
from what they see, feel, or hear, but if that sen-
Treatment sory information is faulty, their experiences of the
SENSORY INTEGRATION dysfunction is postulated to world can be confusing or even frightening. When
be a neurological problem that affects behavior and the ability to recognize sensory information breaks
learning. Medicine cannot cure the problem, but down, a number of problems in learning, develop-
the field of OCCUPATIONAL THERAPY has developed a ment, or behavior may develop.
treatment (sensory integration therapy) that tries to It appears that the brain of a child with an autism
address the child’s underlying problems in process- spectrum disorder is unable to balance the senses
ing sensations. However, there is no sound empirical appropriately. The resulting sensory problems typi-
research supporting sensory integration therapy. cal of autism can range from mild to severe.
Treatment may include guiding the child through See also SENSORY INTEGRATION; SENSORY INTEGRA-
activities that challenge the child’s ability to respond TION DYSFUNCTION.
appropriately to sensory input by making a success-
ful, organized response. Training of specific skills is
not usually the focus of this kind of therapy. Such Sequenced Inventory of Communication Devel-
services are important, but they are not the same opment–Revised A diagnostic test that evaluates
as therapy using a sensory integrative approach. the communication abilities of children with and
Instead, sensory integration therapy focuses on without retardation who are functioning between
such activities that provide sensory input, such as age four months and four years. It can be used in
brushing the child’s skin, swinging him about, pro- treating a young child with language disorders,
viding deep pressure to joints and other body parts, MENTAL RETARDATION, and specific language prob-
and other experiences. lems. It has been used successfully with children
The motivation of the child plays a crucial role with sensory impairments and with children with
in the selection of the activities in a sensory inte- varying degrees of retardation.
shaken baby syndrome 143

sequencing skills The ability to order elements cor- percent of children’s deaths are due to battering or
rectly. Sequencing skills may be motor (sequencing shaking and an additional 15 percent are possible
body movements smoothly) or linguistic (sequenc- cases of shaking. The victims of shaken baby syn-
ing words appropriately into sentences) as well as drome range in age from a few days to five years,
keeping track of the correct order of stimuli. with an average age of six to eight months.
While shaken baby abuse is not limited to any
special group of people, 65 to 90 percent of shak-
serotonin A brain chemical that functions as a ers are men. In the United States, adult males in
neurotransmitter, playing a part in communication their early 20s who are the baby’s father or the
within the nervous system. Thought to be involved mother’s boyfriend are typically the shakers.
in inducing sleep, sensory perception, temperature Females who injure babies by shaking them are
regulation, and control of mood, serotonin also has more likely to be baby-sitters or childcare provid-
been implicated as a factor in some cases of autism ers than mothers.
since the 1961 finding of high levels of serotonin in Severe shaking often begins in response to frus-
the blood of patients with autism. Also elevated are tration over a baby’s crying or toileting problems.
the levels of the serotonin precursor tryptophan; The adult shaker also may be jealous of the atten-
the higher the tryptophan, the worse the symp- tion that the child receives from a partner.
toms, according to some studies. Shaken baby syndrome is also known as abusive
On the other hand, however, the defect in head trauma, shaken brain trauma, pediatric trau-
serotonin metabolism may be a marker for a ten- matic brain injury, whiplash shaken infant syn-
dency to experience autism but not cause the dis- drome, and shaken impact syndrome.
order. Relatives of autistic children are found to
have a variety of serotonin-metabolism disorders, Symptoms and Diagnostic Path
but not the autism itself. Some individuals with A variety of symptoms may point to shaken baby
autism who are treated with serotonin inhibitors syndrome, including
experience less ritualistic behavior and aggres-
sion. • altered consciousness: unconscious or semi-
conscious
shaken baby syndrome Forceful shaking of an • blood pooling in eyes or brain
infant or young child by the arms, legs, chest, or • breathing problems
shoulders that can cause brain damage leading to • head turned to one side, swollen head, or inabil-
AUTISTIC DISORDER, MENTAL RETARDATION, speech ity to lift or turn head
and learning disabilities, paralysis, seizures, hearing • lethargy
loss, and death.
A baby’s head and neck are especially vulner- • pupil abnormality: pinpoint or dilated, unre-
able to injury because the head is so large and the sponsive to light
neck muscles are still weak. In addition, the baby’s • rib cage damage
brain and blood vessels are very fragile and are eas- • seizures or spasms
ily damaged by whiplash motions such as shaking, • skin paleness or blue color
jerking, and jolting.
About 50,000 cases of shaken baby syndrome • spinal cord damage
occur each year in the United States; one shaken • vomiting
baby in four dies as a result of this abuse. Head
trauma is the most frequent cause of permanent In addition, a baby who has been shaken may
damage or death among abused infants and chil- experience poor sucking or swallowing, decreased
dren, and shaking accounts for a significant num- appetite, lack of smiling or vocalizing, rigidity, or be
ber of those cases. Some studies estimate that 15 unable to focus his eyes or track movement.
144 similar conditions

Shaken baby syndrome is difficult to diagnose Childhood Disintegrative Disorder (CDD)


unless someone accurately describes what hap- Much rarer than autism, this is a serious condi-
pens. Physicians often report that a child with pos- tion in which a child older than age three suddenly
sible shaken baby syndrome is brought for medical stops developing normally and regresses to a much
attention due to falls, difficulty breathing, seizures, lower level of functioning, typically after a serious
vomiting, altered consciousness, or choking. The illness such as an infection of the brain and nervous
caregiver may report that the child was shaken to system. The disorder is associated with seizures
try to resuscitate it. Babies with severe or lethal and is more common in boys. Patients with the
shaken baby syndrome are typically brought to the condition usually require lifelong care. CDD was
hospital unconscious with a closed head injury. first described in 1908, many years before autism,
To diagnose shaken baby syndrome, physicians but it has only recently been officially recognized.
look for bleeding in the retina of the eyes (this will Although apparently rare, experts believe the con-
be very rare in a normal fall), along with blood in dition probably has often been incorrectly diag-
the brain or increased head size indicating buildup nosed. Fewer than two children per 100,000 with
of fluid in the tissues of the brain. Damage to the an AUTISM SPECTRUM DISORDER could be classified as
spinal cord and broken ribs from grasping the baby having CDD.
too hard are other signs of shaken baby syndrome.
Computed tomography (CT) and magnetic reso- Deafness
nance imaging (MRI) scans can reveal injuries in Some children who have symptoms similar to
the brain, but are not regularly used because of autism have been discovered instead to be deaf. For
their expense. this reason, a child should always have his hearing
A milder form of this syndrome may be missed checked before being identified as autistic.
or misdiagnosed. Subtle symptoms that may be the
result of shaken baby syndrome are often attrib- Galactosemia
uted to mild viral illnesses, feeding dysfunction, or This inborn error in carbohydrate metabolism
infant colic. These include a history of poor feeding, refers to an inability to metabolize galactose, and
vomiting or flu-like symptoms with no accompany- its symptoms are sometimes confused with those
ing fever or diarrhea, lethargy, and irritability over of autism.
a period of time. Without early medical interven-
tion, the child may be at risk for further damage Landau-Kleffner Syndrome
or even death, depending on the continued occur- This is a very rare disorder in which a child devel-
rences of shaking. ops normally and begins to speak until between
three and seven years. At this point, the child
Treatment Options and Outlook begins to lose receptive language while retaining
An infant who survives the initial shaking may some expressive language and experiences “tele-
require medical, behavioral, and educational assis- graphic” speech with few verbs. The child seems to
tance. In addition, children may need speech and be frustrated and is puzzled by these changes, and
language therapy, vision therapy, physical therapy, begins to show autistic-like behaviors. These chil-
occupational therapy, and special education ser- dren have normal or above normal nonverbal IQ
vices. Some may need the assistance of feeding scores but abnormal electroencephalograms, with
experts and behavioral consultants. or without seizures. Some practitioners suspect that
some cases of childhood disintegrative disorder or
late onset autism may in fact be Landau-Kleffner
similar conditions A number of conditions share syndrome.
similar symptoms with autism, including CHILDHOOD
DISINTEGRATIVE DISORDER, deafness, galactosemia, Phenylketonuria (PKU)
LANDAU-KLEFFNER SYNDROME, phenylketonuria, and This genetic disorder of metabolism will cause brain
RETT DISORDER. damage during the first years of life unless special
social problems 145

dietary measures are taken. It is caused by lack of Other sleep aids include a weighted blanket or tight
an enzyme that converts the amino acid phenylala- fitting mummy-type sleeping bag.
nine into another amino acid (tyrosine). The extra
phenylalanine builds up in body fluids and converts
to several chemicals that damage the brain. Symp- social cognition A term used by social and devel-
toms include MENTAL RETARDATION as well as some opmental PSYCHOLOGISTS to refer to how people
of the symptoms of autism. Fortunately, today come to be concerned about the actions, thoughts,
PKU-related brain damage has been minimized and feelings of others. This area of study examines
because all children are screened for the disorder how social perceptions develop, how individuals
immediately after birth. make social judgments, and how others affect an
individual’s self-concept.
Rett Disorder
This rare neurological disorder occurs in girls, who
show normal development before regressing. The Social Communication Questionnaire (SCQ) This
initial symptoms include some that are associated brief assessment (previously known as the Autism
with autism. Screening Questionnaire [ASQ]) helps evaluate
A child with Rett usually experiences an early communication skills and social functioning in
period of apparently normal or near-normal devel- children who may have autism or AUTISM SPECTRUM
opment until ages six to 18 months, when a period DISORDERS (ASDs). Completed by a parent or other
of temporary stagnation or regression begins. At primary caregiver in less than 10 minutes, the SCQ
this point, the child loses the ability to commu- is a cost-effective way to determine whether an
nicate and to purposefully use the hands. Soon, individual should be referred for a complete diag-
stereotyped hand-writhing movements, gait dis- nostic evaluation. The questionnaire can be used
turbances, and slowing of the rate of head growth to evaluate anyone over age four, as long as the
develop. Other problems may include seizures person’s mental age is more than two years.
and disorganized breathing patterns. APRAXIA (the It is available in two forms (“lifetime” and “cur-
inability to program the body to perform motor rent”) each composed of just 40 yes-or-no ques-
movements) is the most profound and severely tions. Both forms can be given directly to the
handicapping aspect of this condition, which can parent, who can answer the questions without
interfere with every body movement, including supervision. The lifetime form focuses on the child’s
eye gaze and speech. Rett is most often misdiag- entire developmental history, providing a score that
nosed as autism, cerebral palsy, or nonspecific identifies individuals who may have autism and
developmental delay. should be referred for a more complete evaluation
with an assessment such as the AUTISM DIAGNOSTIC
INTERVIEW–REVISED (ADI-R) or the AUTISM DIAG-
sleep problems As many as 65 percent of chil- NOSTIC OBSERVATION SCALE (ADOS).
dren with AUTISTIC DISORDER have abnormal sleep Moving from developmental history to the pres-
patterns. Adequate sleep is particularly important ent, the current form looks at the child’s behav-
in these individuals because sleep disturbances may ior over the most recent three months, producing
worsen other symptoms, exacerbating the disrup- results that can be used to plan treatment and edu-
tive daytime behavior typical of autistic children. cational objectives.
Because the SCQ is inexpensive, easy, and quick
Treatment Options and Outlook to administer, clinicians and educators can rou-
Melatonin has been very useful in helping many tinely screen children for ASDs.
autistic individuals fall asleep. Other popular inter-
ventions include using 5-HTP and implementing a
behavior modification program designed to induce social problems Most children with AUTISM SPEC-
sleep. Vigorous exercise will help a child sleep. TRUM DISORDERS (ASDs) seem to have great problems
146 Social Security assistance

learning how to deal with others in everyday human ways that seem inappropriate to others. This makes
interactions. Normal infants are extremely social, it even harder to find friends.
very early beginning to look at others, turn toward
voices, grasp a finger, and smile.
Infants with autism, however—often even in the Social Security assistance Families with limited
first few months of life—do not interact at all, avoid incomes (under about $25,000 to $35,000 a year,
eye contact, and sometimes arch their backs in an depending on family size and assets) can apply to
effort to distance themselves. At best, these babies the U.S. Social Security agency to obtain money to
seem indifferent to others—even their parents— help children with a disability. For more informa-
and seem to prefer being alone. Some children tion, parents should contact their local Social Secu-
with autism passively accept cuddling while others rity office.
actively resist touching another person at all.
As these children get older, they rarely seek com-
fort from others or respond to parents’ emotions in social skills Many children with AUTISTIC DIS-
a typical way. Scientists suggest that children with ORDER or any of the AUTISM SPECTRUM DISORDERS
autism are attached to their parents, but the way (ASD) also exhibit problems with social skills;
they express this attachment is unusual and diffi- indeed, impaired social functioning is a central fea-
cult to understand. Parents typically feel as if their ture of ASD. Most children learn basic social skills
child does not care about them—or anyone—at all, quickly and easily, such as taking turns, starting a
and many are deeply saddened by this lack of the conversation, or inviting another child to play. For
typical attachment behavior. children with an ASD, the process is much more
As children with autism get older, their social difficult. Many healthy children learn these basic
problems only worsen as they must deal with the skills simply by exposure to social situations, but
complexity of human society. They seem to have children with ASD often need to be taught these
trouble learning to interpret what others are think- skills explicitly. Typically, these children have trou-
ing and feeling, and most totally miss more subtle ble with reciprocity, initiating interactions, main-
social facial cues (such as a smile, a wink, or a gri- taining eye contact, sharing enjoyment, empathy,
mace). To a child who misses or does not under- and inferring the interests of others.
stand these cues, the request: “Come here!” always The cause of these problems varies from an
means the same thing, whether the speaker is smil- inherent problem in the brain, such as a dysfunc-
ing and extending her arms for a hug or frowning tional limbic system, to the lack of opportunity to
and shaking her finger. Unable to interpret gestures acquire skills because of social withdrawal.
and facial expressions, these children find the social Sadly, this lack of social skills makes it hard for
world a bewildering and sometimes frightening the child to develop and maintain meaningful and
place. fulfilling personal relationships. The popular idea
People with autism also have trouble under- that individuals with an autism spectrum disorder
standing that others have different feelings and are not interested in social interactions is often inac-
goals than they have. This difficulty means people curate. In fact, many individuals with ASD do very
with autism are often unable to predict or under- much want to be involved socially, but they do not
stand other people’s actions. have the necessary skills to interact effectively. This
Children with autism tend to lose control when lack can lead to feelings of social anxiety in some
they are angry, frustrated, or in a new or over- children, including a racing heart, sweaty palms,
whelming environment. At these times, they may noticeable shaking, and concentration problems.
hurl objects, break things, attack others, or hurt As a result, children with ASD often avoid social
themselves by banging their heads, pulling their situations and subsequently they do not develop
hair, or biting their arms. Often, people with ASD social skills. When a child always avoids social
also have trouble regulating their emotions, so that encounters, she never gets the chance to learn social
they may cry, scream, or be disruptive in public in interaction skills. In some individuals, these social
Son-Rise Program 147

skill deficits lead to negative peer interactions, peer ing, or make a child withdraw or want to escape
rejection, isolation, axiety, depression, substance are all appropriate for social stories. However, it is
abuse, and even suicidal thoughts. Others simply important to address the child’s misunderstanding
learn how to amuse themselves with solitary activi- of the situation. A child who cries when a teacher
ties and hobbies. leaves the room may be doing so because of fears or
See also SOCIAL SKILLS TRAINING. frustration. Therefore, a story about crying will not
address the reason for the behavior. Instead, a story
about what scares the child and how to deal with
social skills training A type of behavioral therapy those feelings will be more effective.
in which a therapist describes and models appro-
priate behaviors (such as waiting for a turn, shar-
ing toys, asking for help, or responding to teasing). social worker A social worker is a mental health
Through role-playing, a child has an opportunity to professional who provides intervention and treat-
practice these skills in a therapeutic setting. ment to clients who are referred to an agency or
See also SOCIAL SKILLS. through typical school channels. These profession-
als work as part of a team, providing consultation
regarding further assessment or actions for indi-
social stories Scripts that are read out loud to indi- viduals with medical and/or psychological issues,
viduals as a way to clarify social expectations, teach including parents and children. A social worker
the “rules” of society, and encourage self-manage- must have a degree in social work from a college
ment in social situations. The scripts are individual- or university program accredited by the Council on
ized for each patient and reread until the behavior is Social Work Education.
learned. They often include pictures, photographs, The undergraduate degree is the bachelor of
or music. Although proponents believe that the social work (BSW); graduate degrees include the
behavior of autistic individuals improves with this master of social work (MSW) and the doctorate in
repetition, there is no scientific evidence support- social work (DSW) or Ph.D. An MSW is required
ing this claim. to provide therapy. Degree programs involve class-
Developed in 1991 by therapist Carol Gray as room study as well as practical field experience. The
a tool for teaching SOCIAL SKILLS to children with bachelor’s degree prepares graduates for general-
autism, social stories address the child’s ability to ist entry-level work, whereas the master’s degree
understand or recognize feelings, points of view, or is for more advanced clinical practice. A DSW or
others’ plans. Through a story developed about a Ph.D. is useful for doing research or teaching at the
particular situation or event, the child is given as university level.
much information as possible to help understand Most states require practicing social workers to
the appropriate response. The stories typically have be licensed, certified, or registered, although stan-
three sentence types: dards vary.

• descriptive sentences addressing where, who,


what, and why Son-Rise The title of a book by Barry Neil Kaufman
about his autistic son. It is also the name of a pro-
• perspective sentences that provide some under- gram, started by Kaufman, for treating/educating
standing of the thoughts and emotions of others autistic children.
• directive sentences that suggest a response See also SON-RISE PROGRAM.

Before using social stories with an autistic child,


it is important to identify the child’s social skills Son-Rise Program A comprehensive system of
and determine what situations are difficult. Situa- treatment and education designed for children
tions that are frightening, produce tantrums or cry- with autism and other developmental disabilities to
148 special education

dramatically improve skills in all areas of learning, ing Son-Rise therapy can obtain the level of positive
development, and communication. The program outcome that the Kaufmans describe for Raun.
was developed in the 1980s by Neil and Samahria After the publication of their bestselling books
Lyte Kaufman in an effort to reach their autistic son Son-Rise and Son-Rise: The Miracle Continues and the
Raun. award-winning NBC-TV movie Son-Rise: A Miracle
The Son-Rise Program offers techniques for of Love, the Kaufmans were flooded with requests
designing, implementing, and maintaining a stim- for help. In response, the Kaufmans established The
ulating, high-energy, one-on-one, home-based, Option Institute and the Autism Treatment Center
child-centered program. According to the program, of America, where they have offered the Son-Rise
children with autism have the potential for extraor- Program since 1983. Today they have written 12
dinary healing and growth if parents and caregivers books that have been published in 22 languages.
join children instead of opposing them. The pro- Individuals from more than 60 countries on six
gram places parents as key teachers, therapists, and continents have attended programs at the Autism
directors of their own programs and utilizes the Treatment Center of America in Massachusetts and
home as the most nurturing environment in which at various international outreach programs.
to help their children.
The Son-Rise Program suggests that respect and
deep caring are the most important factors that special education Educational services and pro-
affect a child’s motivation to learn, so love and grams that may be appropriate for students with
acceptance are meaningful parts of every teaching special learning needs, including autism. The his-
process. Employing this attitude, program teach- tory of special education can be traced at least as
ers seek to create bonding and a safe environment. far back as Plato’s recommendation that children
The program insists that joining in a child’s repeti- with extraordinary intellectual ability should be
tive and ritualistic behaviors is the key to unlock- provided special leadership training. In the 16th
ing the mystery of these behaviors and promotes century special education was practiced when
eye contact and social development. The program Pedro Ponce de Leon taught deaf Spanish chil-
advocates teaching through interactive play and dren to speak, read, and write. In the 18th century
using energy, excitement, and enthusiasm to Jean-Marc-Gaspard Itard (1775–1838) developed
engage the child. In addition, a nonjudgmental special education techniques with Victor, the so-
and optimistic attitude boosts the child’s enjoy- called WILD BOY OF AVEYRON. During the late 18th
ment and attention. and early 19th centuries, special education pro-
As with most programs for autistic people, Son- cedures for teaching some school skills to pupils
Rise has both proponents—who praise the results— with sensory handicaps were supported by Thomas
and critics, who complain that the program misleads Hopkins Gallaudet. For example, individuals with
some parents with an overly optimistic outlook on profound hearing loss were taught meanings for
autism and potential treatments. printed words by repeated simultaneous presenta-
The program was developed by the Kaufmans tions of a printed word and a picture of what the
after experts advised them to institutionalize their word represented.
severely autistic son because of his condition. About the same time, attempts to educate indi-
Instead, the Kaufmans designed an innovative viduals with MENTAL RETARDATION or with emo-
home-based, child-centered program in an attempt tional or behavioral disorders increased in number
to reach their child. and degree of success, as exemplified in the work
The Kaufmans point to Raun as evidence of the of the American educator Samuel Gridley Howe
success of their program; he eventually graduated (1801–76). Successful attempts to educate the deaf
from an Ivy League university and currently teaches and blind led to scientific methods for teaching the
families and individuals at the Autism Treatment disabled in Europe. For example, Maria Montes-
Center of America. However, there is currently no sori, a pediatrician and innovative educator, used
sound research showing that other children receiv- multi-sensory methods to teach mentally retarded
special needs trusts 149

and culturally deprived children in Rome in the • programmed instruction procedures designed to
late 19th century. present information in small steps
In the 20th century, the enactment and imple- • behavior modification techniques (such as a
mentation of compulsory education laws led to an TOKEN ECONOMY)
increasing need for special education services. In
most developed countries, addressing the educa- While most special education for children with
tional needs of the disabled has become a common autism takes place in regular public schools, some
goal. However, it was not until the mid-1970s, with classes are provided in special public or private day
the passage of the EDUCATION FOR ALL HANDICAPPED or residential schools, public or private hospitals,
CHILDREN ACT OF 1975 (Public Law 94-142), that the and, in some cases, the homes of individuals whose
education of autistic children carried the force of disabilities prevent them from attending school.
law in the United States. This revolutionary legisla- Most individuals with disabilities do not require
tion, guaranteeing a free and appropriate education an entire program of services apart from conven-
for all children, paved the way for a rapid expan- tional instruction, but rather only a modification of
sion of the field of special education that continues features.
to this day. When children are considered able to benefit
PL 94-142, renamed INDIVIDUALS WITH DISABILI- from participation with other children, they are
TIES EDUCATION ACT (IDEA) in 1990, requires stu- usually taught in the normal school program. This
dents with disabilities to be placed in the LEAST process, known as mainstreaming, was believed
RESTRICTIVE ENVIRONMENT (LRE) available in order to be consistent with the legal mandate for educa-
to avoid segregating students with disabilities. tion in the least restrictive environment. More than
Schools that comply with the laws receive more two-thirds of students with disabilities receive most
money from the federal government to offset part of their education in regular education classes.
of the costs of providing special education services. If a child’s handicap is not severe, a special edu-
The federal government also requires that schools cation teacher works with the regular classroom
report the number of special education students teacher to develop skills. In other cases, an assistant
they serve. During the 1989–90 school year, more teacher may be able to care for a student’s specific
than 4.5 million children received such services. needs. For individuals with more serious prob-
About 85 percent of these children were between lems, special education may be provided in a sepa-
the ages of six and 17. rate classroom for part of the school day; students
Special equipment is used extensively with stu- with severe learning and behavioral problems may
dents who have problems with vision or hearing. remain in a separate special education room all day.
Such equipment might include computers to con- The ratio of students to teachers is usually much
vert printed materials into synthetic speech, and spe- lower in a special education classroom than in an
cial desks, chairs, writing devices, and school buses ordinary classroom.
may help students with physical handicaps. Special With the development of assistive technologies,
ramps and wide doors, swimming pools, and school- the field of special education continues to evolve,
rooms specially equipped with hearing-aid transmit- although its goal remains the same as it was from
ting equipment are all part of special education. the beginning—to educate and integrate individu-
Special services for exceptional individuals als with disabilities into society.
include speech language training, physical and
occupational therapies, counseling, and vocational
training for students with mental retardation. special needs trusts A special irrevocable trust that
The most common elements of special education can be established in most states for children with
are the specialized instructional techniques, such as: disabilities that holds title to property for the ben-
efit of a child or adult who has a disability. A trust
• AMERICAN SIGN LANGUAGE can hold cash, personal property, or real property, or
• other augmentative communication methods can be the beneficiary of life insurance proceeds. In a
150 specific learning disabilities

special needs trust, a guardian decides how to spend as perceptual handicaps, brain injury, minimal
money on a child. (Otherwise, children with assets brain dysfunction, dyslexia, and developmental
over about $2,000 would be ineligible to receive APHASIA. The term does not include children who
state and federal services.) have problems that are primarily caused by visual,
To determine the supplemental needs of the hearing, or motor problems, MENTAL RETARDATION,
person, a monthly budget is established based on or emotional disturbance or children of environ-
today’s needs while projecting for the future. Then, mental, cultural, or economic disadvantage.
by using a reasonable rate of return on principal,
the family identifies how much money is needed
to fund the trust. In addition, the life expectancy of speech-language pathologist An expert who spe-
the person must be considered and then the need cializes in the assessment and treatment of speech,
projected into the future using an inflation fac- language, and voice disorders. Also known as a
tor. Once this is done, the family must identify the speech pathologist or speech therapist, the speech-
resources to be used to fund the trust. These may language pathologist evaluates and treats individu-
include stocks, mutual funds, IRAs, 401(k)s, real als with communication problems resulting from
estate, the family home, life insurance, and so on. AUTISTIC DISORDER, hearing loss, brain injury, cleft
Professional management for investing the assets palate, emotional problems, development delays,
may be done by the trustee, or the trustee may hire or stroke. He or she also provides clinical therapy to
advisors. help those with speech and language disorders and
These trusts are the best way for relatives to leave their families understand the disorder and develop
money to a child with autism, because this money better communication skills.
does not affect the child’s eligibility for government Speech-language pathologists administer screen-
services. In addition to working out the financial ing tests and recommend the type of speech lan-
details, it is very useful for parents to write sug- guage treatment that may be necessary, which
gestions about how they want the child cared for. might include a specific program of exercises to
An attorney who specializes in special needs trusts improve language ability or speech, together with
should set up the trust. support from the client’s family and friends. They
A disabled person who expects an inheritance also conduct research to develop new and bet-
may also establish a special needs trust, since ter ways to diagnose and treat speech/language
receiving these funds might otherwise disqualify problems, work with children who have language
the person from public benefits. In many situa- delays and speech problems, and provide treatment
tions, a trust can also be established after the dis- to people who stutter and to those with voice and
abled person has received an extraordinary amount articulation problems.
of money, although in this case a court order might Educational requirements include a master’s
be required. degree in speech-language pathology, more than
See also ESTATE PLANNING; GUARDIANSHIP. 300 hours of supervised clinical experience, and
successful completion of a certifying exam. Those
who meet the strict requirements of the Ameri-
specific learning disabilities A legal term that can Speech-Language and Hearing Association are
plays a central role in legislation governing learn- awarded the certificate of clinical competence.
ing disabilities. As described in Public Law 94-142
(amended by PL 101-76), specific learning disabil-
ity means a disorder in one or more of the basic speech-language therapist See SPEECH-LANGUAGE
psychological processes involved in understand- PATHOLOGIST.
ing or in using spoken or written language. This
may manifest itself in an imperfect ability to listen,
think, speak, read, write, spell, or to do mathemati- speech therapy A type of treatment that may be
cal calculations. The term includes such conditions beneficial to many autistic children, but since often
statistics 151

only one to two hours per week is available, it ment of children aged five to 17 with autism in
probably has only modest benefit unless integrated locations across the United States
with other home and school programs. Sign lan- • relationship training for children with autism
guage and the picture exchange communication and their peers: outpatient treatment study. This
system (PECS) may also be very helpful in devel- study will determine whether peer interaction
oping speech. Speech therapists should work on training interventions are effective in enhancing
helping the child to hear hard consonant sounds the social relationships of children aged six to 11
such as the “c” in “cup.” It is often helpful if the years with autism in Los Angeles, California.
therapist stretches out and enunciates the conso-
nant sounds. See also COLLABORATIVE PROGRAMS OF EXCEL-
LENCE INAUTISM (in Appendix V).

STAART network An autism research network


(Studies to Advance Autism Research and Treat- state services Most states will provide some ser-
ment) including eight centers of excellence in vices for children with autism, primarily funded by
autism research mandated by Congress as part of its the federal Medicaid program. However, many states
Children’s Health Act of 2000. STAART was begun have waiting lists for a limited number of slots, and
by the five institutes of the National Institutes of the quality of services varies widely state to state.
Health Autism Coordinating Committee. Each Most states have one set of services for children
of the eight centers will contribute to the autism under age three (early intervention), and a second
research base in the areas of causes, diagnosis, early set of services for older children and adults. Typi-
detection, prevention, and treatment. cal state services for people with autism include
Most of the eight STAART centers are currently respite, habilitation, speech therapy, and OCCUPA-
evaluating and treating patients as well as enroll- TIONAL THERAPY.
ing them into clinical trials. The centers include In order to qualify for services, children or adults
Boston University, Kennedy Krieger Institute, Mt. must be specifically diagnosed with AUTISTIC DISOR-
Sinai Medical School, University of California/Los DER by a licensed psychiatrist or psychologist with
Angeles, University of North Carolina/Chapel Hill, training in childhood development. The applicant
University of Rochester, University of Washington, also must meet three of seven functional limita-
and Yale University. tions: self-care, receptive and expressive language,
Studies include learning, mobility, self-direction, capacity for inde-
pendent living, and economic self-sufficiency.
• early characteristics of autism: outpatient treat-
ment study that will identify factors that dis-
tinguish children aged 18 to 24 months with statistics Autism is one of the four major devel-
autism from children with developmental delay opmental disabilities, and its incidence appears to
and those with normal development as well as be increasing dramatically. Nationwide, at least 1.5
examine the efficacy of intensive behavioral million Americans have some form of autism, and
therapy in children with autism it now affects one in every 166 births—or 24,000 of
• diet and behavior in young children with autism: the 4 million children born every year, according
outpatient treatment study to determine whether to the Centers for Disease Control and Prevention
a gluten- and casein-free diet has specific benefits (CDC). The CDC also notes that the number of chil-
for children with autism aged 30 to 54 months dren diagnosed with autism, ASPERGER’S SYNDROME,
• citalopram for children with autism and repeti- and other PERVASIVE DEVELOPMENTAL DISORDERS
tive behavior: outpatient treatment study. This increased sixfold from 1994 to 2003.
study will determine the efficacy and safety of Although more cases of autism are being identi-
citalopram compared to placebo in the treat- fied, it is not clear why—or if the number of autism
152 stereotypies

cases has truly increased. Since there appears to stereotypies Patterned repetitive movements, hand-
be more than one cause of autism, there may be wringing, hand flapping, finger-twisting, or complex
more than one reason for the increase. Some of the whole-body movements and utterances that occur
increase may result from better education about often in many individuals with AUTISTIC DISORDER.
the symptoms of autism or from more accurate When engaged in stereotypies the individual is effec-
diagnoses of autism. The new definition of autism tively “tuned out” from attending to events in the
as a spectrum disorder means that even people environment, but when stereotypies are reduced or
with mild symptoms can be classified as having suppressed, the individual can be induced to engage
an AUTISM SPECTRUM DISORDER (ASD), which could in productive learning activities.
also account for the increase in identified cases. As
research moves forward using the current defini-
tion of ASDs, more definite numbers may be avail- stim An abbreviation for “self-stimulation,” a term
able to answer this question. for behaviors (such as rocking) whose sole purpose
The most accurate statistics on the prevalence of appears to be to stimulate the autistic individual’s
autism come from California, which has a system- senses. Many people with autism report that some
atic centralized reporting system of all diagnoses of “self-stims”—such as TOE WALKING, spinning, hand-
autism. The California data show that autism is ris- flapping, screaming, or ECHOLALIA—seem to help
ing rapidly, from one per 2,500 in 1970 to one per calm them down, improve their concentration, or
285 in 1999. Similar results have been reported for shut out an overwhelming sound.
other states by the U.S. Department of Education.
Whereas autism once accounted for 3 percent of
all developmental disabilities, in California it now Supplemental Security Income (SSI) In the past,
accounts for 45 percent of all new developmental a diagnosis of autism almost automatically quali-
disabilities. Other countries report similar increases. fied a child for SSI payments, provided the par-
In the United States overall, studies estimate that as ents met the earnings and resources requirements
many as 12 in every 10,000 children have autism of the SSI program. However, the government
or a related condition, according to the U.S. Depart- is now interpreting the law more strictly. In the
ment of Health and Human Services in 1999. new direction at the Social Security Administra-
Some of the increase in autism cases in which tion (SSA), the regulations operate on the basis
speech is delayed may be the result of better of function rather than diagnosis. Today, a child
diagnosis and awareness, but the report from must have “marked and severe functional limita-
California reveals that this only explains a small tions” in order to be found disabled. If medication
part of the increase. However, the increase in the improves behavior, the child might not qualify
milder variant of autism (Asperger’s syndrome) under this heading.
may indeed be due to better, earlier diagnosis. In addition, the administration requires that a
In Asperger’s syndrome, there is no significant child with autism have “qualitative deficits in verbal
speech delay and early childhood behavior is and nonverbal communication and in imaginative
much more normal. activity.” However, many children with autism com-
Most experts suspect the primary reason for the municate nonverbally in a satisfactory manner and
increase in autism cases is certainly due to environ- engage in very imaginative activities. If this is the
mental factors, not genetics, since there is no such case, the child is not disabled, according to the SSA.
thing as a “genetic epidemic.” Parents should provide an honest but completely
Autism occurs in all parts of the world, in all races accurate description of how the child functions and
and social classes. Autism is three times more com- demand that the school and the teacher do the
mon in boys than in girls. However, in the United same, asking them to make statements that show
States it does occur much more often in boys than the severity of the disability. The child should be
in girls; four out of every five people with autism shown at a normal functioning level, not just how
are boys. the child functions on a good day.
T
tactile perception Perception through the sen- such as tying a shoe or eating with a fork, one at a
sory system of touch, in which direct physical con- time. Researchers at the University of Utah found
tact is transmitted through the nervous system to that children receiving a combination of the two
the brain. treatments (YAP training at school and TEACCH
methods at home) showed three to four times bet-
ter progress than did children who received only
TEACCH An acronym for “Treatment and Educa- the school-based treatment.
tion of Autistic and related Communication-handi-
capped Children,” a university based treatment
program that helps parents act as co-therapists for theory of mind A hypothesis that people with
their autistic children. The method emphasizes AUTISTIC DISORDER lack an awareness of the fact that
structuring the environment, employing one-on- others have beliefs, desires, and intentions that are
one teaching, and using classrooms that provide different from their own. This awareness in non-
visual cues on how to complete tasks (a red ball, autistic individuals starts developing at a relatively
for example, goes through a red circle). TEACCH young age. Proponents of this theory believe that
also encourages children to be more independent the autistic person does not readily develop theo-
by teaching them to use newly mastered skills in ries about what is going on in other people’s minds.
less-structured environments, such as mainstream Instead, autistic individuals’ awareness of other peo-
classrooms. ple’s mind is something that is developed intellec-
This program was developed at the University tually through their own efforts. Adherents of this
of North Carolina/Chapel Hill in 1971 by devel- theory suggest that some or all of other typical char-
opmental PSYCHOLOGIST Eric Schopler to provide acteristics of autism stem from this one main deficit.
a structured learning environment for children
with autism as a way of improving their strengths
and independence. The multidisciplinary program toe walking Walking on tiptoes is quite com-
involves the family and community in an intensive mon in young children age three and younger; but
treatment regimen, five hours a day, five days a toe walking in children five years and older is not
week in a TEACCH classroom. normal and is a typical sign of AUTISTIC DISORDER.
Although this popular intervention is supported Some experts believe that a dysfunctional vestibu-
by years of anecdotal data, very little scientific lar system, a common problem in autism, may be
data exist on the outcomes of TEACCH. However, responsible for toe walking. The vestibular system
other researchers are studying ways to combine provides the brain with feedback about the body’s
this method with others, such as the Young Autism motion and position.
Project (YAP), launched in 1970 by behavioral It may be possible to reduce or eliminate toe
psychologist Ivar Lovaas, Ph.D., at the University walking by stimulating the vestibular system by
of California at Los Angeles. The YAP relies exclu- swinging the child on a glider swing.
sively on DISCRETE TRIAL TRAINING, which teaches Physical exercises may be able to stretch out,
autistic children thousands of individual behaviors, chair, or bench the tendon in order to reduce toe

153
154 token economy

walking. Placing a cast on the person’s leg to stretch complex and severe manifestation of the spectrum
out the tendon is another intervention used to stop of tic disorders.
toe walking. Typically, the cast is applied every two An abnormal metabolism of the neurotrans-
weeks for a total of six to eight weeks. However, mitters dopamine and SEROTONIN are linked to the
the few longer-term studies of this procedure sug- disorder, which is genetically transmitted. Parents
gest it is not successful in stopping toe walking in have a 50 percent chance of passing the gene on
the long term. to their children. Girls with the gene have a 70
percent chance of displaying symptoms; boys with
the gene have a 99 percent chance of displaying
token economy A behavior therapy procedure symptoms.
in which tokens (such as coins or poker chips) are
awarded for desired behavior. The tokens can then Symptoms and Diagnostic Path
be exchanged for privileges or treats. Tourette is commonly associated not only with autis-
tic disorder, but also with other problems, including
attention deficit hyperactivity disorder (ADHD), anx-
Tourette syndrome A neurological disorder char- iety, mood or panic disorders, obsessive-compulsive
acterized by tics, or rapid, sudden movements or disorder (OCD), and behavior problems. In most chil-
vocalizations that occur involuntarily and repeat- dren, Tourette syndrome has a fluctuating course.
edly in a consistent fashion. Tourette syndrome Anxiety, stress, and fatigue often intensify tics, which
may sometimes coexist with AUTISTIC DISORDER. To are usually significantly reduced during sleep or
be diagnosed with Tourette syndrome, an individ- when the patient is focused on an activity. Psychoac-
ual must have multiple motor tics as well as one tive drugs, particularly cocaine and stimulants, have
or more vocal tics over a period of more than one a tendency to worsen tics.
year. These need not all occur simultaneously, but In most cases, tics peak in severity between
in general the tics may occur many times a day, ages nine and 11, but between 5 and 10 percent
usually in brief, intense groupings, nearly every of patients continue to have unchanged or wors-
day or intermittently. ening symptoms into adolescence and adulthood.
Common simple tics include eye blinking, shoul- In this population, the likelihood of tics continu-
der jerking, picking movements, grunting, sniffing, ing for decades is substantial. Patients in their sev-
and barking. Complex tics include facial grimacing, enth, eighth, and ninth decades of life may have
arm flapping, coprolalia (use of obscene words), tics that have been present since childhood. In most
palilalia (repeating one’s own words) and echolalia older patients, the tics tend to become quite stable
(repeating another’s words or phrases). over time, although occasionally new tics will be
For individuals with Tourette, tics may vary over acquired. There is no reliable way to predict which
time in terms of their frequency and severity, as children will have a poorer prognosis.
well as in type and location. In some cases, symp- The single most important component of man-
toms may disappear for a period of weeks or even aging the condition is to get an accurate diagnosis.
months. Although there is an involuntary quality In cases of Tourette syndrome, tics occur suddenly
to the tics experienced by individuals with Tourette, during normal activity, unlike tic occurrence in
most persons have some control over their symp- other movement disorders such as
toms, at least briefly, and even for hours at a time.
• chorea: a pattern of nonrepetitive irregular move-
However, suppressing them may simply postpone
ments
more severe outbursts.
Up to 20 percent of children have at least a tran- • stereotypy: frequent, repetitive behaviors per-
sient tic disorder at some point. Once believed to formed for no obvious reason and with no func-
be rare, Tourette syndrome is now known to be a tional purpose
more common disorder that represents the most • dystonia: a slow, constant repetitive behavior
Tourette syndrome 155

The physician will want to rule out any secondary For tics of mild to moderate severity, or in
causes of tic disorders. A complete general physical patients who are wary of drug side effects, an ini-
examination, with specific attention to the neuro- tial trial of clonidine or guanfacine may be tried.
logic part of the examination, is important. The These medications are modestly effective in tic
thyroid-stimulating hormone (TSH) level should control and have a range of less specific benefits.
be measured in most patients, since tics may occur Many children taking them may be less irritable or
together with hyperthyroidism. A throat culture less impulsive, and manifestations of ADHD may
should be checked for group A beta-hemolytic strep- improve as well.
tococcus, especially if symptoms get worse or better Side effects may include sedation, weight gain,
with ear or throat infections. The evidence of strep poor school performance, social anxiety (including
infection with a single occurrence of worsening tics refusal to go to school in children), and unusual
is not enough to make a diagnosis of streptococcus- body movements, including tardive dyskinesias,
induced, autoimmune-caused Tourette syndrome. a potentially irreversible drug-caused movement
An electroencephalogram is useful only in disorder that may be difficult to distinguish from
patients in whom it is difficult to differentiate tics tics. When pimozide is used, baseline and follow-up
from manifestations of epilepsy. Imaging studies electrocardiograms are recommended.
are not likely to be helpful, and the importance of Most patients with Tourette syndrome require
other studies depends on symptoms. For example, a medication for up to two years. About 15 percent of
urine drug screen for cocaine and stimulants should patients require long-term medication for tic con-
be considered in the case of a teenager with sudden trol. When tics appear to be stable and adequately
onset of tics and inappropriate behavior symptoms. controlled for a period of four to six months, a slow
A person with a family history of liver disease asso- and gradual reduction in medication should follow.
ciated with a parkinsonian or hyperkinetic move- If tics increase, incremental increases in medication
ment disorder should undergo a serum copper test may be needed.
to rule out Wilson’s disease. Because many patients with Tourette syndrome
The basic workup is usually appropriate in a have other conditions, treatment for these con-
patient with a gradual onset of symptoms, a devel- ditions may be necessary. Treatment of ADHD
opmental progression of tics, and a family history with Tourette’s has been controversial because of
of tics or OCD. reports that stimulants, often prescribed to relieve
symptoms of ADHD, hasten the onset or increase
Treatment Options and Outlook the severity of tics in some patients. This obser-
Applied behavioral analysis treatment programs vation alone may not be a contraindication for
using positive reinforcement appear to be most stimulant treatment in patients with significant
helpful in managing tic disorders. Target behav- symptoms of ADHD. Stimulants alone may not
iors may be categorized into two groups: skill defi- substantially worsen the course or severity of the
ciencies (areas that initially require concentration disorder. In some cases, it may be necessary to treat
to build social and academic skills) and behavior both the ADHD and the Tourette syndrome with a
excesses (in which the goal is to help the patient stimulant in combination with either clonidine or
decrease the frequency of these behaviors). guanfacine, or with a neuroleptic agent. A trial of
Drug treatment The goal in tic control is to use clonidine or guanfacine alone may be sufficient to
the lowest dosage of medication that will bring the adequately treat both conditions. When possible,
patient’s functioning to an acceptable level. This may multiple drug use should be avoided, especially in
result in only modest levels of tic reduction. The most children.
common drug treatments are HALOPERIDOL, pimo- Treatment of OCD with the class of antide-
zide (Orap), RISPERIDONE (RISPERDAL), and CLONIDINE pressants known as selective serotonin reuptake
(CATAPRES). Guanfacine (Tenex) is not labeled for inhibitors (such as Prozac) may be effective. With
use in children under 12 years of age. Less often, these medications, there is often a significant delay
CLONAZEPAM (KLONOPIN) may be prescribed. between start of treatment and response, as long as
156 transition plan

four to six weeks. Behavior therapy is also effective Social Security Administration, or independent and
in the treatment of OCD. supported living centers that may provide training
or direct services to help the school with a student’s
transition.
transition plan A plan for the movement from When thinking about transition from high
one place or idea to another. In the context of school, the parents and family of the child should
autism, a transition plan refers to the change from consider what the child likes to do and can do; the
school to adult life. For disabled students, this may possibility of college, vocational education, or adult
require extra effort and planning for the individu- education; possible careers; transportation; where
als and their support teams. Transition legislation the child might live; financial outlook; health insur-
in the INDIVIDUALS WITH DISABILITIES ACT (IDEA) ance; friendship needs; community help; special
states that transition services and planning be interests; religious affiliation; recreation; volunteer
written into the INDIVIDUALIZED EDUCATION PRO- work.
GRAM (IEP) by the time a child is aged 14. (Some The National Information Center for Children
states require transition planning to begin at an age and Youth with Disabilities offers a transition sum-
younger than 14.) IDEA defines transition services mary series that helps families and students with
as a coordinated set of activities for a student that disabilities focus on taking definite steps toward a
promotes movement from school to post-school successful transition, at http://www.nichcy.org.
activities, including postsecondary education, A student’s options after high school can be
vocational training, employment, continuing and increased by a good transition plan during school
adult education, adult services, independent living, and by being given the opportunity to experience
and community participation. A student receiving different settings and develop work-appropriate
special education services in public schools meets skills. A good transition plan allows parents, school
regularly with family and school staff to address officials, and agency personnel to work together to
the IEP; once a student is in high school, these make these opportunities available.
meetings should begin to plan for the transition
from high school to adult life.
The contents of a transition plan should include tuberous sclerosis complex (TSC) A rare genetic
disorder that causes benign brain tumors, EPILEPSY,
1. current levels of performance severe learning disabilities, and very challeng-
2. interests and aptitudes ing behaviors; it occurs quite often in people with
3. post-school goals autism. The condition includes a wide variation in
4. transition activities—specific steps to be taken physical and intellectual abilities.
(such as career/vocational counseling) About a quarter to half of children with TSC
5. designation of responsible persons to oversee also develop behaviors that lead to a diagnosis of
the transition after high school autism, with another fourth having problems that
lead to a diagnosis of AUTISM SPECTRUM DISORDERS
Individualized Transition Plan (ASD). The rate of autism spectrum disorders in the
An individualized transition plan (ITP) may be writ- general population is substantially lower (around
ten as a specific area within the IEP or as a separate 0.5 or 0.6 percent), so there is a substantial increase
document that is also agreed upon by school offi- in autism in children with tuberous sclerosis.
cials and the parents. Transition planning should be Although most autistic children with TSC also are
oriented to life after high school, not limited to what mentally retarded, aspects of autism spectrum dis-
will be accomplished before leaving school, and orders can affect those with no learning problems.
should involve a master plan including long-range More than half of all children with TSC will also
goals and a coordinated set of activities for each. have attention deficit and overactive behaviors that
A school system may work with agencies such as could be diagnosed as attention deficit hyperactiv-
the local Department of Vocational Rehabilitation, ity disorder (ADHD).
tuberous sclerosis complex 157

Tuberous sclerosis complex occurs in both sexes tion of all of the body’s cells, these individuals show
and in all races and ethnic groups and is often first no signs of TSC, but if a portion of the egg or sperm
recognized in children experiencing seizures and cells of a parent carries the TSC mutation, that parent
mental handicaps. However, the symptoms of TSC can have more than one affected child, possibly at
vary greatly and may often not appear until later in the same 50/50 chance that people with TSC have. A
life. There is presently no cure, and there is no way person who carries cells with TSC mutations in her
to predict how severely or mildly an individual may egg or his sperm supply has what is called “germline
be affected by TSC. mosaicism.” The occurrence of germline mosaicism
The condition is caused by mutations in one has led geneticists to estimate a recurrence risk rang-
of two genes (TSC1 and TSC2), which produce ing from 1 percent to 3 percent. At this time, there is
abnormal growth of tissue in the brain and other no simple way to determine whether an unaffected
organs, such as the skin or kidneys. Experts believe parent of a child with TSC has germline mosaicism.
it is these “cortical tubers” that lead to the epilepsy, Some experts believe that the abnormalities in
learning disability, autism, and attention deficit dis- brain development that occur in tuberous sclero-
orders so often seen in these patients. sis may interfere with the proper development of
In some genetic conditions such as this one, brain areas vital to the development of social com-
a mutation in one copy of the gene is enough to munication skills. It could be that if cortical tubers
cause the condition. About a third of people with that develop during brain development in children
TSC inherit it from a parent who also has the condi- with tuberous sclerosis involve the temporal lobes,
tion. If a parent has TSC and passes on the copy of there is a higher chance that an autism spectrum
the gene with the mutation, then the child also will disorder will develop. This is not suprising, because
be affected. If the parent passes on the copy of the the temporal lobes process auditory information
gene without the mutation, the child will not have (especially speech sounds) as well as information
TSC. Thus, there is a 50 percent chance with each about faces and facial expressions.
pregnancy for a parent with TSC to have a child However, it appears that the presence of cortical
with TSC. This is true regardless of the sex of the tubers in the temporal lobes is not enough by itself
parent or the sex of the child. In the remaining two- to trigger autism. Instead, a higher risk of autism
thirds of people with TSC, neither parent shows any occurs if temporal lobe tubers occur with seizures
symptoms or signs of TSC. Instead, one of the nor- in infancy. It could be that the tubers cause both
mal genes from one parent changes to the abnor- the seizures as well as autism. Further research to
mal form, leading to a new occurrence of TSC in the try to determine which of these two explanations is
child. Normally, these parents do not have another correct is required, especially as it has such impor-
child with TSC because the mutation was sporadic, tant implications for treatment.
not inherited. However, some families have more First described in the 1880s, tuberous sclerosis
than one child with TSC, even though neither par- complex affects only some organs in most individu-
ent showed symptoms or findings of TSC. als. Most people who are mildly affected by TSC
Research has discovered that more inherited cases lead active and productive lives, but TSC is a life-
of tuberous sclerosis complex are linked to a mal- long condition.
functioning TSC1 gene, and more sporadic cases to
a faulty TSC2 gene. In addition, the learning dis- Symptoms and Diagnostic Path
ability and epilepsy associated with growths in the Primary symptoms of TSC include tumors of the
brain known as cortical tubers are more frequent in brain, heart, kidneys, skin, lungs, and eyes, along with
people with TSC2 and less frequent in people with mental retardation, seizures, autism, skin lesions,
TSC1 mutations. and pitted teeth. People with TSC may exhibit only
Scientists have also determined that a small num- a few or many of these symptoms. The presence of
ber of physically unaffected parents of a child with brain lesions is linked to the appearance of mental
TSC actually have TSC mutations in some of their retardation and seizures, although only 60 percent of
cells. Because the mutation is limited to a small por- patients with TSC have seizures, and only 40 percent
158 twirling

are mentally retarded. Brain involvement also has Treatment Options and Outlook
been linked to autism and behavioral disorders. There is no cure for TSC, but symptoms can be
Since about 25 percent of people with TSC treated. Skin symptoms most often treated are
are autistic and another 25 percent show signs of facial tumors and fibrous growths. The facial tumors
autism spectrum disorder, including higher func- can be removed using dermabrasion or laser treat-
tioning autism or ASPERGER’S SYNDROME, behavior ment when they are small, before they enlarge and
symptoms are common in this group and are one become fibrous. They most likely will recur and
way to begin the diagnosis of TSC. Benign heart need further treatment, but they will be milder
tumors, which can be picked up during prenatal than if left untreated. Epilepsy drugs can be used
ultrasound, are another early sign of TSC.
to treat epilepsy.
A physician will use an ultraviolet light to better
visualize the white patches on the skin that charac-
terize TSC and often are difficult to see, especially on
infants and people with very pale skin. The entire twirling One type of repetitive movements typi-
body should be examined. Some of the skin signs cal in people with AUTISTIC DISORDER. Typical twirl-
may not be present at birth; the facial tumors do ing movements seen in autism include twirling the
not usually appear until between the ages of three hair, hands, or bodies. Experts call such behaviors
and five at the earliest, and the fibrous growths do STEREOTYPIES or self-stimulation.
not usually occur until much later in life. See also SYMPTOMS OF AUTISM.
U, V
upledger cranio-sacral therapy See CRANIAL the MMR vaccine could contribute to ASD in a small
SACRAL THERAPY. number of children. While other researchers agree
the data do not support a link between the MMR
and autism, more research is clearly needed.
vaccines and autism The possible link between However, current scientific evidence does not
autism and vaccinations is a matter of considerable support the hypothesis that MMR vaccine, or any
controversy. Of particular concern are many vacci- combination of vaccines, causes the development of
nations that began to be administered in the 1980s, autism, including regressive forms of autism, accord-
typically to children between ages one and two. ing to the U.S. Centers for Disease Control and Pre-
Some parents and experts believe that the measles- vention (CDC). The question about a possible link
mumps-rubella (MMR) combination vaccine in par- between MMR vaccine and autism has been exten-
ticular is the culprit behind some cases of autism, sively reviewed by independent groups of experts in
pointing to evidence of measles virus detected in the the United States including the National Academy of
gut, spinal fluid, and blood of these children. Some Sciences, the Institute of Medicine, and the National
experts suspect thimerosal, a mercury-based preser- Institute of Child Health and Human Development.
vative in childhood vaccines such as the MMR, may These reviews have concluded that the available
be the link. The number of vaccines given to chil- epidemiologic evidence does not support a causal
dren has risen over the last two decades, and most link between MMR vaccine and autism.
of those vaccines contained thimerosal, which is The few existing studies that suggest a causal
50 percent mercury. These experts believe that the relationship between MMR vaccine and autism
symptoms of mercury poisoning in children are very have generated media attention. However, these
similar to the symptoms of autism. In response to studies have “significant weaknesses” according to
these concerns, manufacturers of children’s vaccines the CDC and are far outweighed by the epidemio-
have removed thimerosal from many vaccines. logic studies that have consistently failed to show a
However, the National Institute of Child Health relationship between MMR vaccine and autism.
and Human Development (NICHD) argues there Data from California have been used to illustrate
has been no conclusive, scientific evidence that any an increase in cases of autism since the introduc-
part of a vaccine, nor any combination of vaccines tion of the MMR vaccine. However, claims that
causes autism. The NICHD also points out that no the number of cases of autism has been increasing
conclusive data exists that any type of preservative since the introduction of the MMR are based on
(such as thimerosal) used during the manufacture numbers, not rates, and do not account for popula-
of vaccines plays any role in causing autism. tion growth and changes in the composition of the
Moreover, in a 2001 investigation by the Institute population. In addition, changes in the diagnostic
of Medicine, a committee concluded that the “evi- definition of autism were not taken into account.
dence favors rejection of a causal relationship. . . . And as in other areas of the country, children with
between MMR vaccines and autistic spectrum dis- autism are currently being diagnosed at earlier
orders (ASD).” The committee acknowledged, how- ages, so there will be an increase in the number of
ever, that they could not rule out the possibility that reported cases.

159
160 Vineland Adaptive Behavior Scale-II

The CDC concludes that there is no convinc- effectiveness of existing vaccines, and track cases of
ing evidence that vaccines such as the MMR cause vaccine-preventable diseases.
long-term health effects. On the other hand, peo- The topic of vaccine safety became prominent
ple can become ill and die from the diseases the during the mid 1970s when lawsuits were filed on
vaccines prevent. Measles outbreaks have recently behalf of those presumably injured by the diph-
occurred in the United Kingdom and Germany theria, pertussis, tetanus (DPT) vaccine. In order
after an increase in the number of parents who to reduce liability and respond to public health
chose not to have their children vaccinated with concerns, Congress passed the National Childhood
the MMR vaccine. Vaccine Injury Act (NCVIA) in 1986. Designed for
Isolated reports about these vaccines causing citizens injured or killed by vaccines, this system
long-term health problems may sound alarming, provides a no-fault compensation alternative to
the CDC notes, but it maintains that careful review suing vaccine manufacturers and providers. The
of the science reveals that these reports are isolated act also created safety provisions to help educate
and not confirmed by scientifically sound research. the public about vaccine benefits and risks and to
Detailed medical reviews of health effects reported require doctors to report adverse events after vacci-
after receipt of vaccines have often proven to be nation as well as keep records on vaccines adminis-
unrelated to vaccines but rather have been related tered and health problems that occurred following
to other health factors. Because these vaccines are vaccination. The act also created incentives for the
recommended widely to protect the health of the production of safer vaccines.
public, research on any serious hypotheses about
their safety is important to pursue. This is why
several studies are underway to investigate still Vineland Adaptive Behavior Scale-II An assess-
unproven theories about vaccinations and severe ment tool that is one of the oldest measures of
side effects. personal and social skills used for everyday living
The National Immunization Program at the from birth to adulthood and that is used nearly
CDC, along with the American Academy of Pedi- exclusively around the world to assess the adaptive
atrics (AAP) and the American Academy of Family behavior of individuals with AUTISTIC DISORDER. This
Physicians (AAFP), suggests that physicians follow second edition of the assessment, updated in 2005,
the recommended childhood immunization sched- provides critical data for predicting autistic disorder
ule that is published every year. Physicians are and ASPERGER’S SYNDROME and for the diagnosis or
advised to take careful family histories of all their evaluation of a wide range of disabilities, including
patients to bring to light any factors that might MENTAL RETARDATION, developmental delays, func-
influence their recommendations about the timing tional skills impairment, and speech/language prob-
of vaccinations. lems. The Vineland summarizes adaptive behavior
Some researchers and physicians have rec- in three areas: receptive, expressive, and written
ommended an alternative vaccine schedule that communication; personal, domestic, and commu-
involves delaying some vaccinations and separat- nity daily living issues; and socialization (interper-
ing the measles, mumps, and rubella vaccinations. sonal, play and leisure, and coping).
Medical experts argue that a vaccine is not licensed The Expanded Form of the Vineland was
unless it is considered safe and its benefits far out- designed for program planning, and it is often used
weigh perceived risks. For a vaccine to be included to measure the effectiveness of treatment and the
on the annual Recommended Childhood Immuni- development of social skills.
zation Schedule for the United States, it must first
be approved by the Advisory Committee on Immu-
nization Practices from the CDC, the AAP, and the vitamins and autism While there are no vita-
AAFP. Scientists and physicians in these organi- mins that can correct the underlying neurological
zations carefully weigh the risks and benefits of problems that seem to cause autism, some parents
newly developed vaccines, monitor the safety and believe that adding certain vitamins or minerals to
vitamins and autism 161

their autistic child’s diet may help with behavioral an important role in producing enzymes needed
issues. Over the past 10 years, there have been by the brain. In 18 studies on the use of vitamin
claims that adding essential vitamins such as B6, B and magnesium (which makes vitamin B more
B12, magnesium, and cod liver oil, and removing effective), almost half of the individuals with
gluten and casein from a child’s diet may improve autism showed improvement, with fewer behav-
digestion, allergies, and sociability. Others believe ioral problems, better eye contact and attention,
that vitamin C may improve depression and ease and improvements in learning. Other research
symptoms in patients with autism. While many studies have shown that cod liver oil supplements
researchers and experts do not agree that these (rich in vitamins A and D) may improve eye con-
therapies are effective or scientifically valid, many tact and behavior of children with autism. Vita-
parents and some physicians report improvement min C may improve brain function and symptom
in people with autism with the use of individual severity in children with autism. A small Arizona
or combined nutritional supplements. In any case study noted improvements in sleep and gastro-
most experts would agree that adding vitamins in intestinal problems with a multivitamin/mineral
appropriate amounts will not be harmful. complex, as well as better language, eye contact,
A few studies conducted in 2000 suggest that and behavior.
intestinal disorders and chronic gastrointestinal The Autism Society of America (ASA) recom-
inflammation may slow the absorption of essential mends that parents considering adding vitamins or
nutrients and disrupt immune system and metabolic minerals to a child’s diet should obtain a lab analy-
functions that depend on these vitamins. Other stud- sis of the child’s current nutritional status. A blood
ies have shown that some children with autism may test is the most accurate way to measure vitamin
have low levels of vitamins A, B1, B3, B5, biotin, sele- and mineral levels. The ASA also recommends par-
nium, zinc, and magnesium, while others may have ents consult an expert in nutritional therapy when
a higher copper-to-zinc ratio. This would suggest planning on giving a child vitamins, since large
that people with autism should avoid copper and doses of some vitamins and minerals may not be
take extra zinc to boost their immune system. Other harmful and others can be toxic.
studies have indicated a need for more calcium. Vitamin supplements should then be added to
The most common vitamin supplement recom- the diet slowly, one by one, so that their effects can
mended to treat autism is vitamin B, which plays be observed for one to two months.
W
Wawro, Richard (1952– ) An AUTISTIC SAVANT ORDER, Victor was a feral child found wandering
from Edinburgh, Scotland who is internationally naked in the woods near Saint Sernin sur Rance
known for his detailed oil wax crayon drawings of in southern France at the end of the 18th century.
intense depth and color. Captured while digging up vegetables from a tan-
Diagnosed as severely retarded and autistic at the ner’s garden, the boy could not speak but instead
age of three, he exhibited an obsession for same- emitted a few weird cries, trying to hide himself
ness, withdrawal, twirling, and spinning objects. from his captors. The next day, local gendarmes
Unable to speak until age 11, he required surgery took the boy to a hospice in a nearby town, where
for cataracts on both eyes during childhood. intense debate centered on his origins and condi-
He began drawing on a chalkboard at about the tion. Aged about 12, he had several scars, which
same time he was diagnosed, covering a tiny chalk- suggested that he had been living in the wild for
board with images. At age six, he was introduced some time. He got his name from the character in a
to drawing with crayons. Six years later, experts French play (Victor, ou l’enfant de la forêt—Victor, or
were startled at his skill, describing his work as an the Child of the Forest).
“incredible phenomenon.” Finally, Victor, now famed as the “wild boy of
Like other savants, Wawro has an incredible Aveyron,” was given to sympathetic young doctor
memory for each picture, and can date them pre- Jean-Marc Itard, who concluded that Victor was in
cisely in his mind. He draws from images seen only fact an abandoned intelligent deaf-mute, who had
once, on television or in a book, but he often adds somehow been able to survive on his own. Itard
his own interpretations or improvisation. He seems wanted to teach him to speak and civilize him, but
especially fascinated with light, and his ability to he made little progress. Scientific debate about his
capture light and shadow is striking. condition was renewed from time to time, and the
At the completion of each picture, Richard takes story of the wild boy was influential in the develop-
it to his father for approval. Richard’s mother died ment of several theories of language learning and
in 1979, but in spite of their closeness, Richard did human evolution. Since then, some experts suspect
not stop painting. he actually had autism.
He had his first exhibition in Edinburgh at age 17; Recent research into local and national archives
today, he is known worldwide and has sold more in France suggests that Victor was probably aban-
than 1,000 pictures in more than 100 exhibitions. doned by his family. Victor died at age 40 at an
One of his exhibitions was opened by then-minister annex of the Paris Institution des Sourds-Muets
of education Margaret Thatcher, who owns several (Paris Institute of Deaf-Mutes).
of his pictures—as does Pope John Paul II.
An award-winning documentary about Rich- Williams syndrome A rare genetic disorder char-
ard Wawro (With Eyes Wide Open) opened in 1983. acterized by mild MENTAL RETARDATION and some
A videotape (A Real Rainman: Portrait of an Autistic types of autistic behavior, including developmen-
Savant) was also produced. tal and language delays, poor gross motor skills,
hypersensitivity to sounds, and PERSEVERATION (the
Wild Boy of Aveyron Possibly the first docu- multiple repetition of words or actions). The syn-
mented case of a child with suspected AUTISTIC DIS- drome occurs when a portion of DNA material on
162
Williams syndrome 163

chromosome 7 is missing, which happens in one They also share additional physical symptoms
out of 20,000 to 50,000 births. such as cardiovascular problems, high blood pres-
sure, low birth weight, slow weight gain, feeding
Symptoms and Diagnostic Path problems, irritability during infancy, dental and
Symptoms vary among patients. Although they kidney abnormalities, musculoskeletal problems,
exhibit some autistic tendencies, children with Wil- and high calcium levels. Children with Williams
liams syndrome do not have the social problems syndrome have distinctive elfin facial features, with
so typical of individuals with autism. Although almond-shaped eyes, oval ears, full lips, small chins,
individuals with Williams syndrome may show narrow faces, and broad mouths.
competence in areas such as language, music, and
interpersonal relations, their IQ is usually below Treatment Options and Outlook
average, and they are considered moderately to There is neither a cure for Williams syndrome nor
mildly retarded; they also may have developmen- a standard course of treatment; instead, treatment
tal delay, learning disabilities, or attention deficit is aimed at easing symptoms. Individuals with Wil-
disorder. liams syndrome need regular monitoring for poten-
Individuals with Williams syndrome seem to tial medical problems by a physician familiar with
have a higher rate of musicality, than the general the disorder, as well as specialized services to help
population. Among those with increased levels them make the most of their potential.
of musicality there are people with Williams syn- The prognosis for individuals with Williams syn-
drome who are musically gifted, but many others drome varies. Some people may be able to master
are not. It is a love of music, rather than musi- self-help skills, complete academic or vocational
cal giftedness, that appears to be a common trait school, and live in supervised homes or on their
among these individuals. own, while others may not progress to this level.
Y
yeast A type of fungus that is normally pres- biotic treatment, and it has been linked by some
ent in the body. In certain conditions it can grow people to antibiotic treatment for continuous ear
out of control, causing vaginal yeast infections infections during infancy.
or thrush. Some people believe that more severe For this reason, some individuals advocate giv-
symptoms of yeast overgrowth may trigger autism ing anti-yeast medications to children with autism
symptoms. in an effort to control symptoms. However, the
In particular, overgrowth of Candida albicans (a benefits of this practice have not been proven in
form of yeast) is associated with long-term anti- clinical studies.

164
APPENDIXES
Appendix I: Organizations

Appendix II: Helpful Web Sites

Appendix III: State Autism Organizations

Appendix IV: Autism Resources by State

Appendix V: Collaborative Programs of Excellence


in Autism

Appendix VI: Clinical Trials for Autistic Disorder


APPENDIX I
ORGANIZATIONS

ADVOCACY (315) 476-2462


http://www.ani.autistics.org
Autism National Committee
P.O. Box 429 The only autistic-run national self-help and advocacy
Forest Knolls, CA 94933 organization for autistic people, the network is
http://www.autcom.org dedicated to supporting people with autism, offering
An autism advocacy organization dedicated to peer support, tips, problem solving, information,
social justice for all citizens with autism, offering and referrals. ANI publishes a newsletter, arranges
a shared vision and a commitment to positive pen pals, and conducts advocacy activities. ANI
approaches. The organization was founded in members believe that the best advocates for autistic
1990 to protect and advance the human rights people are autistic people themselves and that
and civil rights of all persons with autism, supports for autistic people should be aimed at
pervasive developmental disorders, and related helping them to compensate, navigate, and function
differences of communication and behavior. in the world. ANI provides a forum for autistic
The organization welcomes the participation of people to share information, peer support, and tips
all family members, people with autism/PDD, for coping and problem-solving, and advocates for
caring professionals, and other friends who wish appropriate services and civil rights for all autistic
to implement the right to self-determination by people. ANI also provides a social outlet for autistic
hearing and heeding the voices of people with people to explore and participate in autistic social
autism. The group provides information, support, experiences. In addition to promoting self-advocacy
networking, advocacy, a strong voice in federal for high-functioning autistic adults, ANI works to
legislation and policy, a newsletter, conferences improve the lives of autistic people who, whether
and trainings, a bookstore, a variety of unique because they are too young, or because they do
publications, and an ongoing reappraisal of not have adequate communication skills, are not
fundamental research and treatment. The Web site able to advocate for themselves. ANI helps autistic
offers the most recent issue of their newsletter; people who are unable to participate directly by
updates on politics and judicial decisions; providing information and referrals for parents and
commentary by people with autism; information teachers and by educating the public about autism.
about developmental and relationship-based Services include a pen pal directory for autistic
approaches to early intervention and education; people and people with related developmental
coverage of issues affecting community living,
neurological abnormalities (hydrocephalus, Tourette
home-owning, and consumer choice; advocacy for
syndrome, Williams syndrome). People who are
access to augmentative, assistive, and facilitated
able to correspond independently receive the
communication; plus in-depth book reviews and a
full pen pal directory; people who need to have
bookstore.
someone else help them with correspondence will
Autism Network International receive a directory containing only other people
P.O. Box 35448 who also receive assistance with correspondence.
Syracuse, NY 13210 However, their information will still be included in
166
Appendix I 167

the full directory, along with a notation that they A foundation that provides information on
use assisted communication, so that independent diagnosis, treatment, management of Angelman
communicators who do not mind having a third syndrome, and offers support and advocacy through
party see their mail will be able to write to them. education, information exchange, and research. The
ANI also offers an Internet discussion list open group also offers local contacts and a newsletter.
to autistic people, family members, and friends, as
well as a speaker referral service for individuals and APRAXIA
organizations wishing to engage autistic speakers
for presentations or interviews. Only people with a Childhood Apraxia of Speech Association
formal diagnosis of autism, pervasive development (CASANA)
disorder, or Asperger’s syndrome may be included 1151 Freeport Road, #243
on the speaker list. Finally, the group offers a refer- Pittsburgh, PA 15238
ence library of educational materials about autism, (412) 767-6589
self-advocacy, and civil rights. http://www.apraxia-kids.org/about/CASANA/
index.html
Autism Speaks
2 Park Avenue, 11th Floor A nonprofit organization whose mission is to
strengthen the support systems in the lives of
New York, NY 10016
children with apraxia of speech so that each
(212) 252-8584
child is afforded their best opportunity to learn
http://www.autismspeaks.org
to talk. The association provides electronic and
An advocacy group dedicated to funding global print information to families, professionals,
biomedical research into the causes, prevention, policymakers, and other members of the public and
treatments, and cure for autism; to raising supports parents and professionals. The association
public awareness about autism and its effects on works to improve public policy and services for
individuals, families, and society; and to bringing children affected by the disorder, provides training
hope to all who deal with the hardships of this opportunities for families and professionals,
disorder. The organization is committed to raising encourages research into childhood apraxia, and co-
the funds necessary to support these goals. Autism sponsors a biennial scientific research symposium.
Speaks aims to bring the autism community
together as one strong voice to urge the government ASPERGER’S DISORDER
and private sector to listen to member concerns and Asperger Syndrome Coalition of the United
take action to address this urgent global health crisis. States (ASC-US)
Autism Speaks was formed by a merger between 7 MAAP Services, Inc.
Autism Speaks and the National Alliance for Autism P.O. Box 524
Research (NAAR) in 2006. The consolidation of the Crown Point, IN 46307
two charities is based on their joint commitment to (904) 745-6741
accelerate and fund biomedical research into the http://maapservices.org
causes, prevention, treatments and cure for autism
A national nonprofit support and advocacy
spectrum disorders; to increase awareness of the
organization for Asperger’s syndrome and related
nation’s fastest growing developmental disorder; disorders that is committed to providing the most
and to advocate for the needs of affected families. up-to-date and comprehensive information on the
condition.
ANGELMAN SYNDROME
Angelman Syndrome Foundation AUDITORY TRAINING
3015 E. New York Street, Suite A2265 Center for the Study of Autism
Aurora, IL 60504 P.O. Box 4538
(800) 432-6435 or (630) 978-4245 Salem, OR 97302
168 The Encyclopedia of Autism Spectrum Disorders

(503) 643-4121 A national, nonprofit organization formed by a


http://www.autism.org group of parents and professionals concerned
about the care and treatment of individuals with
The Center for the Study of Autism (CSA)
provides information about autism to parents autistic disorder.
and professionals, and conducts research on the ASAT is dedicated to disseminating accurate,
usefulness of various therapeutic interventions, scientifically valid information about autism and its
including those on auditory integration training, treatment options and committed to science as the
Temple Grandin’s Hug Box, visual training, most objective, time-tested, and reliable approach
irlen lenses, intelligence testing, and Asperger’s to discerning between safe, effective treatments
syndrome. Much of the center’s research is and those that are harmful or ineffective. They
undertaken in collaboration with the Autism educate professionals and the public about state-
Research Institute in San Diego. The Center for of-the-art, valid treatments for people with autism
the Study of Autism provides information to and support certification to ensure everyone with
parents and professionals through workshops, autism receives treatment from practitioners who
conferences, and articles. Its Web site offers have met minimum standards of competency.
detailed information on autism and all its The association also forms interactive, supportive
aspects, along with videos, articles, and Web partnerships with universities to develop accredited
casts. educational programs for autism practitioners and
improves standards of care for people with autism.
Society for Auditory Intervention Autism Research Institute
Techniques (SAIT) 4182 Adams Avenue
P.O. Box 4538 San Diego, CA 92116
Salem, OR 97302 (619) 281-7165
http://www.sait.org http://www.autismwebsite.com/ARI/index.htm
Society dedicated to the enhancement of the quality This nonprofit organization was established in
of life for individuals with autism through auditory 1967 by Dr. Bernie Rimland, primarily devoted
integration training (AIT) and other auditory- to conducting and disseminating research on the
based interventions. SAIT distributes information causes of autism and on methods of preventing,
about auditory integration training (AIT) and diagnosing, and treating autism and other severe
other auditory-based interventions to professionals behavioral disorders of childhood. The Center
and parents. The organization establishes policies, for the Study of Autism in Oregon is an affiliate
training, and equipment standards, offers guidelines of the Autism Research Institute. Established in
for practitioners, and promotes professional and 1967, the San Diego–based nonprofit ARI is world
ethical standards. The organization also provides headquarters for research and information on
information to practitioners and others regarding autism and related disorders, and the epicenter
standard procedures, promotes networking and of a rapidly growing movement that maintains
sharing of information, and advises and evaluates that autism can be treated effectively through
research on the efficacy of AIT and other auditory- intensive behavior modification and a variety
based interventions. of individualized biomedical treatments. ARI
provides free and low-cost information to parents,
professionals and the media by mail and on its
AUTISM Web site. A publication list of available books,
tapes, videos and articles is available at the ARI
Association for Science in Autism Treatment
Web site and by mail.
389 Main Street, Suite 202
Malden, MA 02148 Autism Society of America (ASA)
(781) 397-8943 7910 Woodmont Avenue, Suite 300
http://www.asatonline.org Bethesda, MD 20814-3067
Appendix I 169

(301) 657-0881 or (800) 3-AUTISM children with autism in 1995, the organization
http://www.autism-society.org has grown from a kitchen-table effort to the
largest provider of support for autism research
A nonprofit organization that, through advocacy,
and resources in the country. The organization’s
public awareness, education, and research, seeks
primary focus is to fund essential research through
to promote opportunities for persons within
a variety of programs designed to encourage
the autism spectrum and their families to be
innovative approaches toward identifying the
fully included, participating members of their
causes, prevention, treatment and a cure for autism
communities. Founded in 1965 by a small group
and related disorders. Since its founding, Cure
of parents, the society is the leading source of
Autism Now has committed more than $25 million
information and referral on autism and for decades
in research, the establishment and ongoing support
has been the largest collective voice representing
of the Autism Genetic Resource Exchange (AGRE),
the autism community. Members are connected
and numerous outreach and awareness activities
through a volunteer network of more than 240
aimed at families, physicians, governmental officials
chapters in 50 states.
and the general public. Cure Autism Now believes
Autism Society of America Foundation that, with enough determination, money and
7910 Woodmont Avenue, Suite 300 manpower, answers are found sooner rather than
Bethesda, MD 20814 later.
(800) 3AUTISM, ext. 127 or Doug Flutie Jr. Foundation for Autism
(301) 657-0881, ext. 127 P.O. Box 767
http://www.autism-society.org.foundation/ Framingham, MA 01701
foundation.html http://www.dougflutiejrfoundation.org
A fund-raising organization founded in 1996 by Nonprofit foundation designed to help financially
the Autism Society of America, the largest and disadvantaged families with an autistic member
oldest organization representing people with fund education and research, and to serve as a
autism. The ASAF has implemented action on communications center for new programs and
several autism research priorities, developing up- services developed for individuals with autism.
to-date statistics; developing a national registry NFL quarterback Doug Flutie Sr. and his wife
of individuals and families with autism who are Laurie started “Dougie’s Team” in 1998 to honor
willing to participate in research studies; and their son Doug Jr., who was diagnosed with
implementing a system to identify potential autism at age three, and to help other families
donors of autism brain tissue for research purposes facing childhood autism through support and
and facilitating the donation process. In addition, education. The Fluties began raising funds for
the foundation contributes money for applied and autism in 1998; in 2000, they established the
biomedical research in the causes of and treatment Doug Flutie Jr. Foundation for Autism, Inc. as an
approaches to autism. independent foundation to continue this work.
Since 1998, the Fluties have helped raise more
Cure Autism Now (CAN)
than $5 million for autism through corporate
5455 Wilshire Boulevard, Suite 2250
and individual donations, fund-raisers, and
Los Angeles, CA 90036-4272
endorsement promotions featuring Doug and
(888) 828-8476
Doug Jr., as well as through sales of Flutie Flakes
http://www.cureautismnow.org
and other related items.
Cure Autism Now (CAN) is an organization of The foundation awards annual grants to
parents, clinicians, and leading scientists committed nonprofit organizations that provide services for
to accelerating the pace of biomedical research in children with autism and to organizations that
autism through raising money for research projects, conduct research on the causes and effects of
education and outreach. Founded by parents of autism.
170 The Encyclopedia of Autism Spectrum Disorders

In addition, fund-raising events are held organizations, agencies, and families with the
throughout the year, including the Full Court knowledge and skills to support children and
Charity Challenge, Marino 5K Road Race, and adults in typical early intervention, school,
the Doug Flutie Jr. Celebrity Golf Classic. Funds community, work, and home settings. The
are generated through sponsorships, registration Indiana Resource Center for Autism does not
fees, and live and silent auctions that are held promote one method or a single approach;
in conjunction with the events. Past grants have instead, IRCA staff strive to address the specific
funded summer camp scholarships for children needs of the individual by providing information
with developmental disabilities, a music therapy and training on a variety of strategies and
program, an after-school program, scholarships for methods.
parents to attend educational autism conferences,
equipment for occupational and physical therapy,
recreational programs, a pediatrician awareness COMMUNICATION
program and many other programs that serve chil- American Sign Language Teachers
dren with autism. Association
Families for Early Autism Treatment P.O. Box 92445
P.O. Box 255722 Rochester, NY 14692-9998
Sacramento, CA 95865 http://www.aslta.org
http://www.feat.org
The American Sign Language Teachers
A nonprofit organization of parents, educators, Association—ASLTA is the only national
and other professionals dedicated to providing organization dedicated to the improvement and
education, advocacy, and support for the northern expansion of the teaching of ASL and deaf studies
California autism community. It is designed to at all levels of instruction. Founded in 1975 to
help families with children diagnosed with autism meet the increasing need for ASL teachers, ASLTA
spectrum disorder, including autism, pervasive is an individual membership organization of more
developmental disorder, or Asperger’s syndrome. It than 1,000 ASL and deaf studies educators from
offers a network of support where families can meet elementary through graduate education as well as
each other and discuss issues surrounding autism agencies. The organization offers position papers
and treatment options. FEAT offers a quarterly on class size, class meeting frequency, guidelines
newsletter, a library, and parent resource meetings for hiring American Sign Language teachers, and
designed to provide information to families whose maintains a Code of Ethics, as well as offering
children have been diagnosed with autism and to certification. It also offers information about ASL,
provide access to a network of families who can be a store, a newsletter, and an annual conference,
supportive. Throughout the year, FEAT has parties, and advocates for legislation recognizing ASL as a
field trips, and fund-raising events. language. It also promotes the hiring of certified
teachers of ASL.
Indiana Resource Center for Autism
2853 E. 10th Street American Speech-Language-Hearing
Bloomington, IN 47408-2696 Association (ASHA)
(812) 855-6508 10801 Rockville Pike
http://www/iidc.indiana.edu/irca/fmain1.html Rockville, MD 20852
(800) 498-2071 (voice mail) or (301) 897-5700 (TTY)
A clinic that conducts outreach training and
http://www.asha.org
consultations, engages in research, and develops
information on behalf of individuals across the The American Speech-Language Hearing
autism spectrum, including autism, Asperger’s Association is the professional, scientific, and
syndrome, and other pervasive developmental credentialing association for more than 12,000
disorders. The center provides communities, audiologists, speech-language pathologists,
Appendix I 171

and speech, language and hearing scientists. Association of University Centers on


Audiologists specialize in preventing and assessing Disabilities (American Association
hearing disorders as well as providing audiologic of University Affiliated Programs for
treatment including hearing aids. Speech-language Persons with Developmental Disabilities)
pathologists identify, assess, and treat speech and 1010 Wayne Avenue, Suite 920
language problems including swallowing disorders. Silver Spring, MD 20910
The Web site offers lots of information, a referral (301) 588-8252
line, summer camps, publications, newsletters, http://www.aauap.org
insurance information.
AAMR is a nonprofit association that promotes
International Society for Augmentative and progressive policies, sound research, effective
Alternative Communication practices, and universal human rights for
49 The Donway West, Suite 308 people with intellectual and developmental
Toronto, ON M3C 3M9 disabilities. AAMR is dedicated to achieving full
Canada societal inclusion and participation of people
(416) 385-0351 with intellectual and developmental disabilities,
http://www.isaac-online.org/en/home.html advocates for equality, individual dignity and other
human rights, and tries to expand opportunities
ISAAC is an international society that works for choice and self-determination. The group also
to improve the life of every child and adult tries to influence positive attitudes and public
with speech difficulties. ISAAC started in 1983, awareness by recognizing the contributions of
and today has members in 50 countries use people with intellectual disabilities and promotes
communication aids, their families, therapists, genuine accommodations to expand participation
teachers, doctors, researchers, and people who in all aspects of life. The association helps families
make communication aids, such as electronic and other caregivers to provide support in the
talking boxes, computers, books and boards with community and works to increase access to quality
pictures or letters, or sign language. ISAAC supports health, education, vocational, and other human
and encourages the best possible communication services and supports. It is also interested in
methods for people who find communication advancing basic and applied research to prevent
difficult. Some people need to use communication or minimize the effects of intellectual disability
aids because they are born with disabilities like and to enhance the quality of life, cultivating and
cerebral palsy. Other people get disabilities when providing leadership in the field, and seeking a
they are older because they have an accident or diversity of disciplines, cultures, and perspectives.
an illness. All these people have a “vision” that Finally, the association tries to enhance skills,
everyone in the world who could communicate knowledge, rewards and conditions of people
more easily by using augmentative and alternative working in the field, encourage promising students
communication (AAC), will be able to do so. to pursue careers in the field of disabilities, and
establish partnerships and strategic alliances with
organizations that share our values and goals.
DEVELOPMENTAL DISABILITIES The Arc (formerly Association for Retarded
American Association on Mental Retardation Citizens)
444 N. Capitol Street, NW, Suite 846 1010 Wayne Avenue, Suite 650
Washington, DC 20001 Silver Spring, MD 20910
(800) 424-3688 or (202) 387-1968 (301) 565-3842
http://www.aamr.org http://www.thearc.org
National organization providing information, The Arc is the grassroots national organization of
services, and support, plus advocacy. and for people with mental retardation and related
172 The Encyclopedia of Autism Spectrum Disorders

developmental disabilities and their families, with issues or raise other nationally significant,
more than 140,000 members affiliated through precedent setting legal issues. VOR members
approximately 1,000 state and local chapters include families, organizations and professionals
across the nation. It advocates for the rights who support high quality care with adequate
and full participation of all children and adults funding and legal options.
with intellectual and developmental disabilities.
Together with a network of members and
affiliated chapters, the group improves systems of DIET
supports and services; connects families; inspires Autism Network for Dietary Intervention
communities and influences public policy. The P.O. Box 335
Arc also is devoted to promoting and improving Pennington, NJ 08534
supports and services for people with mental http://www.autismndi.com
retardation and their families, and fosters research
and education regarding the prevention of mental A nonprofit organization dedicated to providing
retardation in infants and young children. continued support for families implementing a
It was founded in 1950 by a small group of special gluten- and casein-free diet. The network’s
parents and other concerned individuals because activities are based on the belief that many cases
at that time, little was known about the condi- of autism are caused by an immune system
tion of mental retardation or its causes, and there dysfunction that affects the body’s ability to
were virtually no programs and activities in com- break down certain proteins and combat yeasts
munities to assist in the development and care and bacteria. ANDI was established by parent
of children and adults with mental retardation researchers Lisa Lewis and Karyn Seroussi to
and to help support families. In the early days the help families around the world get started on and
association worked to change the public’s percep- maintain the diet.
tion of children with mental retardation and to Feingold Association of the United States
educate parents and others regarding the potential P.O. Box 6550
of people with mental retardation. The Arc also Alexandria, VA 22306
worked to procure services for children and adults (703) 768-FAUS or (800) 321-3287
who were denied day care, preschool, education e-mail: help@feingold.org
and work programs. http://www.feingold.org
Voice of the Retarded AND
5005 Newport Drive, Suite 108
Rolling Meadows, IL 60008 554 East Main Street, Suite 301
(847) 253-6020 Riverhead, NY 11901
http://www.vor.org (631) 369-9340
http://www.feingold.org
A national organization that advocates for a full
range of quality residential options and services. A nonprofit organization of families, educators,
This includes home, community residences, and health professionals dedicated to helping
congregate and large facilities. VOR opposes children and adults apply proven dietary
efforts that eliminate options for persons with techniques for better behavior, learning, and
mental retardation, medically fragile conditions health. The association was founded by parents
and challenging behaviors. VOR advocates that who supported the work of pediatrician Ben
the final determination of what is appropriate F. Feingold, M.D., chief of allergy at Kaiser-
depends on the unique abilities and needs of the Permanente Medical Center in San Francisco
individual and desires of the family and guardians. during the 1960s. Dr. Feingold used an
VOR watches and acts when legal actions in any elimination diet that excluded aspirin and foods
one state threaten residential choice, guardianship believed to contain salicylate compounds, as well
Appendix I 173

as synthetic colorings and flavorings, to help Association for the Severely Handicapped
children with behavior problems and autism who (TASH)
had not been helped by medical interventions. 29 W. Susquehanna Avenue, Suite 210
In May 1976 parent volunteers established a Baltimore, MD 21204
national organization to support the work of the (410) 828-8274
many local Feingold diet groups. The association http://www.tash.org
conducts extensive research with manufacturers to An international advocacy association of people
identify foods and nonfood items that are free of with disabilities, their families, and others, with
the offending additives. They publish books listing 38 chapters throughout the world. It actively
thousands of acceptable brand name products that promotes the full inclusion and participation
are readily available in most supermarkets. This of those with disabilities and seeks to eliminate
information is updated 10 times a year through physical and social obstacles that interfere with
the association’s newsletter, Pure Facts. quality of life. The Association for the Severely
Handicapped (TASH) focuses on those people
DISABILITIES with disabilities who are most at risk for being
excluded from the mainstream, are perceived
American Association of People with by traditional service systems as being most
Disabilities challenging, are most likely to have their rights
1629 K Street NW, Suite 503 abridged, and are most likely to be at risk
Washington, DC 20006 for living, working, playing, and/or learning
(800) 840-8844 or (202) 457-0046 in segregated environments. TASH creates
http://www.aapd-dc.org opportunities for collaboration among families,
AAPD is the largest national nonprofit cross- self-advocates, professionals, policymakers
disability member organization in the United and other advocates; advocates for equity,
States, dedicated to ensuring economic self- opportunities, social justice, and rights; provides
sufficiency and political empowerment for the information and supports excellence in research
more than 56 million Americans with disabilities. that translates to excellence in practice. TASH
AAPD works in coalition with other disability also promotes individualized, quality supports,
organizations for the full implementation and and works toward the elimination of institutions,
enforcement of disability nondiscrimination laws, congregate living settings, segregated schools/
particularly the Americans with Disabilities Act classrooms, sheltered work environments, and
(ADA) of 1990 and the Rehabilitation Act of other segregated services in favor of quality,
1973. Members include people with disabilities individualized, inclusive supports. TASH also
in America, plus families and friends. The supports legislation, litigation and public policy
organization leverages the numbers of people and promotes communities in which no one is
with disabilities and their families and friends to segregated and everyone belongs.
access economic and other benefits to form an
Children’s Defense Fund
organization which will be a positive private-
25 E. Street NW
sector force to achieve the goal of full inclusion in
Washington, DC 20001
American society. AAPD was founded after five
(202) 628-8787
key leaders from the disability community (who
http://www.childrensdefense.org
were instrumental in drafting, advocating for
and passage of the landmark civil rights law, the The mission of the Children’s Defense Fund is to
Americans with Disabilities Act) met to organize leave no child behind and to ensure every child a
a national, nonpartisan organization that can healthy start, a head start, a fair start, a safe start,
and will represent 54 million Americans with and a moral start in life and successful passage to
disabilities. adulthood with the help of caring families and
174 The Encyclopedia of Autism Spectrum Disorders

communities. CDF provides a strong, effective people with all types of disabilities throughout
voice for all the children of America who cannot the United States and worldwide. DRA’s national
vote, lobby, or speak for themselves. They pay advocacy work includes high-impact class action
particular attention to the needs of poor and litigation on behalf of people with all types of
minority children and those with disabilities. CDF disabilities, including mobility, hearing, vision,
educates the nation about the needs of children learning and psychological disabilities. Through
and encourages preventive investment before negotiation and litigation, DRA has made
they get sick or into trouble, drop out of school, or thousands of facilities throughout the country
suffer family breakdown. CDF began in 1973 and accessible and has enforced access rights for
is a private, nonprofit organization supported by millions of people with disabilities in many key
foundation and corporate grants and individual areas of life, including education, employment,
donations, and has never taken government funds. transportation and health care. DRA also engages
in nonlitigation advocacy throughout the country,
Commission on Mental and Physical
including research and education projects focused
Disability Law American Bar Association
on opening up access to schools, the professions
740 15th Street NW
and health care.
Washington, DC 20005
(202) 662-1570 Disability Rights Education and Defense
http://www.abanet.org/disability Fund, Inc.
2212 Sixth Street
This ABA-affiliated group is committed to justice
Berkeley, CA 94710
for those with physical disabilities and maintains
(510) 644-2555
resources and references for helping the disability
http://www.dredf.org
community. The Commission’s mission is to
promote the ABA’s commitment to justice and A national law and policy center dedicated to
the rule of law for persons with mental, physical, protecting and helping people with disabilities
and sensory disabilities and to promote their full through legislation, litigation, advocacy, technical
and equal participation in the legal profession. help, and education. Founded in 1979 by people
Since 1973, the ABA’s Commission on Mental with disabilities and parents of children with
and Physical Disability has been the primary entity disabilities, the Disability Rights Education
within the ABA that focuses on the law-related and Defense Fund, Inc. (DREDF) is a national
concerns of persons with mental and physical law and policy center dedicated to protecting
disabilities. The Commission’s members include and advancing the civil rights of people with
lawyers and other professionals, many of whom disabilities through legislation, litigation,
have disabilities. advocacy, technical assistance, and education
and training of attorneys, advocates, persons
Disability Rights Advocates
with disabilities, and parents of children with
449 15th Street, Suite 303
disabilities.
Oakland, CA 94612
(510) 451-8644 Family Resource Center on Disabilities
http://www.dralegal.org (FRCD)
20 East Jackson Boulevard, Room 300
Nonprofit civil rights organization for people with
Chicago, IL 60604
disabilities. This nonprofit civil rights law firm is
(800) 952-4199 or (312) 939-3513
dedicated to protecting and advancing the civil
http://www.frcd.org
rights of people with disabilities. DRA advocates
for disability rights through high-impact litigation, Coalition of parents, professionals, and volunteers
as well as research and education, and does not dedicated to improving services for all children with
charge clients for services. DRA’s mission is to disabilities. Formerly known as the Coordinating
ensure dignity, equality, and opportunity for Council for Handicapped Children, FRCD was
Appendix I 175

organized in 1969 by parents, professionals, and clubs, newsletters, information on careers, training
volunteers who sought to improve services for materials, and a national conference.
all children with disabilities. In 1976, the Family
National Library Service for the Blind and
Resource Center on Disabilities (FRCD) became one
Physically Handicapped
of five pilot programs to operate a parent center
1291 Taylor Street, NW
funded by the U.S. Department of Education, Office
Washington, DC 20011
of Special Education Programs (then known as the
(202) 707-5100; 888-657-7323; (202) 707-0744
Bureau of Education for the Handicapped). Today,
(TDD)
there are approximately 80 federally funded Parent
http://www.loc.gov/nls
Centers throughout the United States. During its
30-year existence FRCD has answered more than Through a national network of cooperating libraries,
200,000 requests for information, training, and NLS administers a free library program of braille and
support services. audio materials circulated to eligible borrowers in
the United States by postage-free mail. The talking-
National Dissemination Center for Children book program was established by an act of Congress
with Disabilities (NICHCY) in 1931 to serve blind adults. It was expanded in
P.O. Box 1492 1952 to include children, in 1962 to provide music
Washington, DC 20013 materials, and again in 1966 to include individuals
(800) 695-0285 with other physical impairments that prevent
http://www.nichcy.org the reading of standard print. Any resident of the
This national information and referral center United States or American citizen living abroad who
provides information on disabilities and is unable to read or use standard print materials
disability-related issues for families, educators, as a result of a temporary or permanent visual or
and other professionals with a special focus on physical limitation may receive service.
children from birth to age 22. The association National Organization on Disability (N.O.D.)
provides information on specific disabilities, 910 16th Street NW, Suite 600
early intervention, special education and related Washington, DC 20006
services, individualized education programs, (202) 293-5960
family issues, disability organizations, professional http://www.nod.org
associations, education rights, and transition
to adult life. The group also offers referrals, National disability network group concerned
information services, and materials in English and with all disabilities of all ages. The mission of
Spanish. the National Organization on Disability is to
expand the participation and contribution of
National Institute for People with America’s 54 million men, women and children
Disabilities with disabilities in all aspects of life. By raising
460 West 34th Street disability awareness through programs and
New York, NY 10001 information, together we can work toward
(212) 563-7474 closing the participation gaps. Programs include
http://www.yai.org the Community Partnership Program, National
Partnership Program, CEO Council, Emergency
Since its inception in 1957, YAI/National
Preparedness Program, Religion and Disaiblity
Institute for People with Disabilities Network
Program, and the World Committee on disability.
has been a national leader in the provision of N.O.D. also awards a number of competitions for
services, education and training in the field of disability-friendly communities and nations.
developmental and learning disabilities. The
YAI/NIPD Network has always been in the National Parent Network on Disabilities
forefront of education and training in the field 1130 17th Street NW, Suite 400
of disabilities. The Web site offers information, Washington, DC 20036
176 The Encyclopedia of Autism Spectrum Disorders

(202) 463-2299 World Institute on Disability (WID)


http://www.npnd.org 510 16th Street, Suite 100
Oakland, CA 94612
A nonprofit organization dedicated to empowering
(510) 763-4100
parents of children with disabilities. Located in
http://www.wid.org
Washington, D.C., the group provides information
on the activities of all three branches of Nonprofit public policy center dedicated to
government that affect people with disabilities. The independence and inclusion of people with
primary activities include supporting legislation disabilities. World Institute on Disability is a
that will improve the lives and protect the rights of nonprofit research, public policy and advocacy
all disabled persons. Members include individuals center dedicated to promoting the civil rights and
and family members, as well as national, state, and full societal inclusion of people with disabilities.
local organizations that represent the interests of WID’s work focuses on four areas: employment
individuals with disabilities. and economic development; accessible health
care and personal assistance services; inclusive
Protection and Advocacy technology design; and international disability
100 Howe Avenue, Suite 185-N and development. More than half of the Board
Sacramento, CA 95825 of Directors and staff are people with disabilities
(800) 776-5746 and are respected national leaders in the disability
http://www.pai-ca.org field as well as in industry, government and social
Nonprofit agency that provides legal assistance services. Since its founding in 1983 by Ed Roberts,
to those with physical, developmental, and Judy Heumann, and Joan Leon, WID has earned
psychiatric disabilities. Services include information a reputation for groundbreaking research and
and referral to other help, peer and self-advocacy public education on issues important to people
training, representation in administrative and with disabilities. WID brings a diverse disability
judicial proceedings, investigation of abuse and perspective and provides comprehensive analyses
neglect, and legislative advocacy. crucial to improving public policy and civil rights
for people with disabilities.
Sibling Support Project
Children’s Hospital and Medical Center
P.O. Box 5371 CL-09
EDUCATION
Seattle, WA 98105
(206) 368-0371 Association on Higher Education and
http://www.thearc.org/siblingsupport Disability (AHEAD)
P.O. Box 540666
The Sibling Support Project, believing that Waltham, MA 02454
disabilities, illness, and mental health issues affect (781) 788-0003
the lives of all family members, seeks to increase http://www.ahead.org
the peer support and information opportunities
for brothers and sisters of people with special Organization of professionals committed to full
needs and to increase parents’ and providers’ participation in higher education for those with
understanding of sibling issues. It trains local disabilities, offering education and training.
service providers on how to create community- AHEAD is a professional association committed
based peer support programs for young siblings; to full participation of persons with disabilities
hosts workshops, listservs, and Web sites for in postsecondary education. As an international
young and adult siblings; and increases parents’ resource, AHEAD values diversity, personal
and providers’ awareness of siblings’ unique, growth and development, and creativity; promotes
lifelong, and ever-changing concerns through leadership and exemplary practices; and provides
workshops, Web sites, and written materials. professional development and disseminates
Appendix I 177

information. AHEAD also addresses current and than 500 at the state level through the Council of
emerging issues with respect to disability, education, Affiliated State Associations. NAPSEC programs
and accessibility to achieve universal access. Since provide special education for both privately and
1977, AHEAD has delivered quality training to publicly placed individuals. The majority of the
higher education personnel through conferences, membership serves publicly placed individuals
workshops, publications and consultation. who are funded through the Individuals with
AHEAD members represent a diverse network of Disabilities Education Act (IDEA). Ten percent of
professionals who actively address disability issues on the membership provide services to privately placed
their campuses and in the field of higher education. individuals only and receive no federal funding.

National Association for the Education National Center on Accelerating Student


of Young Children (NAEYC) Learning
1509 16th Street, NW Vanderbilt Kennedy Center
Washington, DC 20036 Peabody Box 328, Vanderbilt University
(202) 232-8777 or (800) 424-2460 Nashville, TN 37203
http://www.naeyc.org (615) 343-4782

The National Association for the Education of The National Center on Accelerating Student
Young Children (NAEYC) is a national membership Learning (CASL) is designed to accelerate learning
organization that focuses on children from birth for students with disabilities in the early grades and
to age eight. It sponsors an annual conference, thereby to provide a solid foundation for strong
publishes a bimonthly journal, and has a catalog of achievement in the intermediate grades and beyond.
books, brochures, videos, and posters. It is dedicated CASL is a five-year collaborative research effort
to improving the well-being of all young children, supported by the U.S. Department of Education’s
with particular focus on the quality of educational Office of Special Education Programs (OSEP).
and developmental services for all children from Participating institutions are Teachers College of
birth through age eight. Founded in 1926, NAEYC is Columbia University and Vanderbilt University.
the world’s largest organization working on behalf
of young children with nearly 100,000 members, National Center on Educational Outcomes
a national network of over 300 local, state, and University of Minnesota
regional affiliates, and a growing global alliance 350 Elliott Hall
of other organizations. Membership is open to all 75 East River Road
individuals who share a desire to serve and act on Minneapolis, MN 55455
behalf of the needs and rights of all young children. (612) 626-1530
http://education.umn.edu/nceo
National Association of Private Special
Education Centers (NAPSEC) The National Center on Educational Outcomes
provides national leadership in the participation
1522 K Street NW, Suite 1032
of students with disabilities in national and
Washington, DC 20005
state assessments, standards-setting efforts, and
(202) 408-3338
graduation requirements. It was established in
http://www.napsec.org
1990 to provide national leadership in designing
The National Association of Private Special Edu- and building educational assessments and
cation Centers (NAPSEC) is a nonprofit association accountability systems that appropriately monitor
that represents private special education centers educational results for all students, including
and their leaders. The group promotes high-quality students with disabilities and students with limited
programs for individuals with disabilities and their English proficiency. Since its establishment,
families and advocates for access to the continuum NCEO has been working with states and federal
of alternative placements and services. NAPSEC agencies to identify important outcomes of
represents about 300 programs nationally, and more education for students with disabilities and
178 The Encyclopedia of Autism Spectrum Disorders

examining the participation of students in treatments and a cure for Fragile X. It offers
national and state assessments, including the use free telephone consultation, basic information,
of accommodations and alternate assessments. It and medical and genetic services referral. The
also has evaluated national and state practices in association is an educational and legislative
reporting assessment information on students with advocate and operates 100 regional service chapters
disabilities, and conducts directed research in the nationally and internationally. It also offers family
area of assessment and accountability. assistance grants and research grants, and local,
national, and international conference sponsorship.
Parent Advocacy Coalition for Educational A newsletter and educational resources (books,
Rights (PACER) audio, video) are available for a fee.
8161 Normandale Boulevard
Minneapolis, MN 55437
(952) 838-9000 GENETIC ISSUES
http://www.pacer.org
Autism Genetic Resource Exchange
This parent-to-parent organization has lots of Research Program
resources for parents of children with disabilities, 5455 Wilshire Boulevard, Suite 715
including training programs for parents and youth, Los Angeles, CA 90036
technical assistance, and advocacy. The mission (866) 612-2473 or (323) 931-6577
of PACER Center is to expand opportunities and http://www.agre.org
enhance the quality of life of children and young
Nonprofit organization created by Cure Autism
adults with disabilities and their families, based on
Now (CAN) to advance genetic research in autism
the concept of parents helping parents. Through
spectrum disorders. The goal of AGRE is to
its ALLIANCE and other national projects, PACER
facilitate more rapid progress in the identification
responds to thousands of parents and professionals
of the genetic underpinnings of autism and autism
each year. From California to Minnesota to New
spectrum disorders by making this information
York, PACER resources make a difference in
available to the scientific community. This
the lives of 6.5 million children with disabilities
substantial collection, which has now grown to
nationwide. With assistance to individual families,
almost 700 multiplex and simplex families, has
workshops, materials for parents and professionals,
clearly moved the field in that direction. AGRE is
and leadership in securing a free and appropriate
a DNA repository and family registry, housing a
public education for all children, PACER’s work
database of genotypic and phenotypic information
affects and encourages families in Minnesota and
that is available to the entire scientific community.
across the nation.
In this 6th edition, there are 142 new pedigrees.
As they become available, additional family
FRAGILE X SYNDROME pedigrees will be posted on the online catalog
National Fragile X Foundation which, based on the expanding nature of the
P.O. Box 190488 resource, provides the most up-to-date availability
San Francisco, CA 94119 of pedigrees and biomaterials. Cell lines have
(925) 938-9300 been established for the majority of families in
http://www.fragilex.org this collection and serum is available on a subset
of the subjects until stocks are depleted. Most
Nonprofit organization that provides advocacy, AGRE families have had extensive evaluations by
consultation, information, research, newsletters, a variety of pediatricians, psychiatrists, and other
referrals, and education. Founded in 1984, the neurodevelopmental specialists.
National Fragile X Foundation unites the Fragile X
community to enrich lives through educational and American Hyperlexia Association
emotional support, promote public and professional 194 W. Spangler, Suite B
awareness, and advance research toward improved Elmhurst, IL 60126
Appendix I 179

(630) 415-2212 collaboration with Canadian governments, is to


http://www.hyperlexia.org reduce the impact of autism spectrum disorders
(ASD) on individuals and their families,
A nonprofit organization comprised of parents and
minimize its lost, and maximize individual
relatives of children with hyperlexia, speech and
potential. The ASC provides information,
language professionals, education professionals,
encourages research, communicates with
and other concerned individuals. AHA is dedicated
government, agencies, and other organizations
to the advancement of the education and
on behalf of those affected by ASD, and
general welfare of children with hyperlexia, and
promotes conferences and workshops.
encourages research related to hyperlexia. The
association also tries to help families of children National Autistic Society of Great Britain
with hyperlexia get appropriate services. Note: the 393 City Road
AHA has been inactive since late 2004. However, London ECIVING
their Web site remains available as a source of http://www.nas.org.uk
information on this subject.
The National Autistic Society champions the
rights and interests of all people with autism and
INTERNATIONAL ensures they and their families receive quality
Autisme France services appropriate to their needs. Their Web
1209 Chemin des Campelières site includes information about autism and
06254 Mougine Cedex Asperger’s syndrome, along with information
France about the NAS and its services and activities.
http://autisme.france.free.fr The National Autistic Society runs a range of
nonprofit schools and colleges for students of
Autisme France was created in 1989 by parents of all ages with widely varying needs, including
autistic chidren who were experiencing problems more able students and those with high support
in encouraging their development. Today, thanks needs arising out of challenging behaviors. The
to its partners and affiliated organizations, Autisme society also provides a wide range of residential
France is providing a movement of hope and and day services for adults with autistic spectrum
solidarity. Autisme France edits a newsletter three disorders, including residential and day provision
times a year, La lettre d’Autisme France and presents in urban and rural settings offering flexible,
the latest information on its Web site along with specialized support to individuals with varying
practical advice and helpful research. needs. The aim of all services is to offer access
Autism Society Canada to as full, enjoyable and meaningful a life as
Box 22017, 1670 Heron Road possible to each individual.
Ottawa, ON K1V OC2
Canada
(613) 789-8943 MENTAL RETARDATION
http://www.autismsocietycanada.ca
See DEVELOPMENTAL DISABILITIES.
Nonprofit group founded in 1976 by a group
of Canadian parents in an effort to encourage
the formation of autism societies in all
provinces and territories and to address the MUSIC THERAPY
national autism issues. Today, the ASC is the American Musical Therapy Association
only national autism charitable organization 8455 Colesville Road, Suite 1000
committed to advocacy, public education, Silver Spring, MD 20910
information and referral, and provincial (301) 589-3300
development support. Its goal, through http://www.musictherapy.org
180 The Encyclopedia of Autism Spectrum Disorders

The mission of the American Music Therapy The Center for the Study of Autism (CSA)
Association is to advance public awareness of provides information about autism to parents
the benefits of music therapy and increase access and professionals, and conducts research on the
to quality music therapy services in a rapidly usefulness of various therapeutic interventions,
changing world. Founded in 1998, AMTA’s including those on auditory integration training,
purpose is the progressive development of the Temple Grandin’s Hug Box, visual training,
therapeutic use of music in rehabilitation, special Irlen lenses, intelligence testing, and Asperger’s
education, and community settings. Predecessors to syndrome. Much of the center’s research is
the American Music Therapy Association included undertaken in collaboration with the Autism
the National Association for Music Therapy and the Research Institute in San Diego. The Center for
American Association for Music Therapy. AMTA the Study of Autism provides information to
is committed to the advancement of education, parents and professionals through workshops,
training, professional standards, credentials, conferences, and articles. Its Web site offers
and research in support of the music therapy detailed information on autism and all its
profession. aspects, along with videos, articles, and Web
casts.
Cure Autism Now (CAN) Foundation
RESEARCH
5455 Wilshire Boulevard, Suite 2250
Autism Research Institute Los Angeles, CA 90036
4182 Adams Avenue (888) 828-8476
San Diego, CA 92116 http://www.canfoundation.org
(619) 281-7165
www.autismwebsite.com/ari/index.htm An organization of parents, clinicians, and scientists
committed to accelerating the pace of biomedical
A nonprofit organization devoted to conducting research in autism by raising money for research
and publicizing its research into the causes of projects, education, and outreach. Founded in
autism and on methods of preventing, diagnosing, 1995 by parents of children with autism, the
and treating autism and other severe behavioral organization’s primary focus is to fund essential
disorders of childhood. The institute provides research through a variety of programs designed to
this information to parents and professionals encourage innovative approaches toward identifying
throughout the world. the causes, prevention, treatment, and a cure for
ARI was established in 1967 by Bernard Rim- autism and related disorders. CAN has grown to be
land, Ph.D., an international authority on autism the largest private funder of autism research and
and the father of a high-functioning autistic son. resources in the country. This funding includes
Dr. Rimland is the author of Infantile Autism, the support for pilot research grants, young investigator
founder of the Autism Society of America, and awards, bridge grants, targeted research projects
was chief technical advisor on Rain Man, a film and the establishment and ongoing support of the
that featured an adult with autism. world’s first collaborative gene bank for autism; the
ARI’s data bank contains more than 35,000 Autism Genetic Resource Exchange (AGRE).
detailed case histories of autistic children from Since its founding, Cure Autism Now has
more than 60 countries. The organization pub- committed more than $20 million in support
lishes the Autism Research Review International, of the AGRE, as well as helping fund numer-
a quarterly newsletter covering biomedical and ous outreach and awareness activities aimed at
educational advances in autism research. families, physicians, governmental officials, and
Center for the Study of Autism the general public. CAN has also helped triple the
P.O. Box 4538 number of scientists working in the field of autism
Salem, OR 97302 and motivated passage of the Children’s Health
(503) 643-4121 Act of 2000.
Appendix I 181

RETT DISORDER (310) 320-9986 or (310) 533-8338


http://www.sensoryint.com
International Rett Disorder Association
9121 Piscataway Road, Suite 2B Sensory Integration International is a non-
Clinton, MD 20735 profit, tax-exempt corporation concerned with
(800) 818-7388 or (301) 856-3334 the impact of sensory integrative problems on
http://www.rettdisorder.org people’s lives. Its goal is to improve quality of life
for persons with sensory processing disorders,
A support group for parents of children with
advocating early intervention to prevent
Rett disorder, founded by parents in early 1984
sensory inefficiencies that have the potential
and dedicated to better understanding of this
of contributing to debilitating social or health
disorder. Members include parents, relatives,
conditions. SII promotes education about the
doctors, therapists, researchers, and friends
impact of inadequate sensory processing and
interested in providing a better future for girls
its relationship to health and one’s occupation.
with Rett disorder. IRSA supports medical research
SII was founded by a group of occupational
to determine the cause and find a cure for Rett
therapists dedicated to helping people with
disorder, increases public awareness of the
disabilities through the application of knowledge
condition, and provides information and support to
from the neurobehavioral sciences. The
families of affected children.
organization has focused its efforts on research
Rett Disorder Research Foundation (RDRF) and professional education in the area of learning
4600 Devitt Drive disabilities, with emphasis on the pioneering
Cincinnati, OH 45246 work of Dr. A. Jean Ayres, but now promotes
(513) 874-3020 evaluation of other treatment approaches
http://www.rsrf.org and theoretical models that address sensory
integration throughout the life span in a variety
The RDRF was founded in late 1999 by a
of diagnostic groups. Membership includes
small but passionate group of parents who
occupational therapists, physical therapists,
were concerned by the lack of research being
parents, educators, speech therapists, physicians,
conducted on Rett disorder. Today RDRF is the
nurses, psychologists, and other health-care and
world’s leading private funder of Rett research,
childcare professionals.
funding 82 projects at 57 of the world’s premier
institutions totaling approximately $8.8 million.
RDRF organizes the only annual scientific SPECIAL EDUCATION
meeting devoted to Rett disorder, and each June
See EDUCATION.
RDRF convenes more than 100 researchers and
clinicians from around the world for a three
day Rett disorder symposium. As a volunteer TREATMENT
organization, RDRF has raised millions since its
Association for the Advancement
inception. The foundation directs 97 percent
of Behavior Therapy
of each dollar donated directly to program
305 Seventh Avenue, 16th Floor
services. RDRF’s mission is to fund, promote and
New York, NY 10001-6008
accelerate biomedical research for the treatment
(212) 647-1890
and cure of Rett disorder.
http://www.aabt.org/staff
A professional interdisciplinary organization
SENSORY INTEGRATION concerned with applying behavioral and cognitive
Sensory Integration International (SII) sciences to understanding human behavior and
P.O. Box 5339 developing interventions to enhance the human
Torrance, CA 90510-5339 condition. ABCT is a not-for-profit organization
182 The Encyclopedia of Autism Spectrum Disorders

of more than 4,500 mental health professionals (919) 966-2174


and students who utilize and/or are interested in http://www.teacch.com/teacch.htm
empirically based behavior therapy or cognitive
Division TEACCH works to enable individuals
behavior therapy.
with autism to function as meaningfully and as
Association for Behavior Analysis independently as possible, to provide services
1219 South Park Street throghout North Carolina to individuals with
Kalamazoo, MI 49001 autism and their families, and to provide
(269) 492-9310 information, integrate clinical services, and
htpp://www.abainternational.org disseminate information about the theory of
the TEACCH method. TEACCH was developed
The Association develops and supports the
in the early 1970s by Eric Schopler, to focus on
growth and vitality of behavior analysis through
the person with autism and the development
research, education and practice. It serves as
of a program around the person’s skills, and
an advocate for and facilitator of research,
interests. In 1972, the state created the Division
and develops, improves, and disseminates
for the Treatment and Education of Autistic and
best practices in the recruitment, training,
Related Communication Handicapped Children.
and professional development of behavior
Located in the psychiatry department at the
analysts. The association focuses on the practice
University of North Carolina at Chapel Hill,
of behavior analysis (including certification,
the program (named Division TEACCH) was
continuing education, code of ethics, practice
the first statewide, comprehensive community-
standards, legislation and public policy, third
based program dedicated to improving the
party payments), and produces convention and
understanding and services for autistic and
conference programs and scholarly journals.
communciation handicapped children and their
Autism Treatment Center of America families.
Son-Rise Program
Interdisciplinary Council On Developmental
2080 South Undermountain Road
and Learning Disorders
Sheffield, MA 01257
4938 Hampden Lane, Suite 800
(413) 229-2100
Bethesda, MD 20814
http://www.autismtreatmentcenter.org
(301) 656-2667
The Autism Treatment Center of America is the htpp://www.icdl.com
worldwide teaching center for The Son-Rise
Organization founded by psychiatrist Stanley
Program, a unique treatment for children and
Greenspan that includes a multidisciplinary
adults challenged by autism, autism spectrum
network of professionals who believe in
disorders, pervasive developmental disorder (PDD),
individualizing assessment and treatment
Asperger’s syndrome, and other developmental
approaches based on a child’s specific functional
difficulties. During the last 25 years, the center
developmental profile. The group’s aim is to
has worked with more than 22,000 parents and
support families of children with developmental
professionals from around the world teaching them
and/or learning disorders by providing resource
a system of treatment and education featuring love
information and opportunities for communication
and positive reinforcement.
and to promote floor time (the Developmental,
Division TEACCH Individual-Difference, Relationship-Based
CB 7180 intervention model). The group also advocates for
100 Renee Lynne Court sound public policies that support children with
University of North Carolina developmental and/or learning disorders and their
Chapel Hill, NC 27599 families.
APPENDIX II
HELPFUL WEB SITES

APRAXIA CAMPS
Apraxia-Kids Courage Camps
http://www.apraxia-kids.org http://www.couragecamps.org
Kids Camps
ASPERGER’S DISORDER http://www.kidscamps.com

Asperger’s Connection
http://www.ddleadership.org/aspergers/index.
DISABILITIES
html
Americans with Disabilities Act Home Page
Asperger’s Disorder Home Page http://www.usdoj.gov/crt/ada/adahom1.htm
http://www.aspergers.com
EDUCATION
AUTISM AND AUTISTIC Education Overview
DISORDER http://www.autism-society.org/site/PageServer?
pagename=EducationOverview
The Autism Autoimmunity Project
http://www.taap.info National Early Childhood Technical
Assistance Center
Autism-PDD Resources Network
http://www.nectac.org
http://www.autism-pdd.net
Autism Resources on the Internet
http://www.autism.org/links.html
Independent LIving on the Autistic
Spectrum Mailing List
http://www.inlv.demon.nl

183
APPENDIX III
STATE AUTISM ORGANIZATIONS

ALABAMA CALIFORNIA
Autism Society of Alabama California Chapter: Autism Society
3100 Lorna Road, Suite 132 of America
Birmingham, AL 35216-5450 P.O. Box 8600
(877) 428-8476 Long Beach, CA 90808-0600
http://www.autism-alabama.org (800) 700-0037
http://www.geocities.com/HotSprings/Chalet/1782
North Alabama Chapter: Autism Society
of America Central California Chapter: Autism Society
P.O. Box 2902 of America
Huntsville, AL 35804-2902 P.O. Box 13213
(256) 424-7910 Fresno, CA 93794-3213
(559) 227-8991
http://www.asaccc.org
ARIZONA
Coachella Valley (CA) Chapter ASA
Autism Society of Greater Phoenix P.O. Box 3605
P.O. Box 10543 Palm Desert, CA 92255-1052
Phoenix, AZ 85064-0543 (760) 779-0012
(480) 940-1093 http://coachellavalleyautism.org
http://www.phxautism.org
Greater Long Beach/South Bay Chapter:
Pima County (AZ) Chapter: ASA ASA
P.O. Box 44156 8620 Portafino Place
Tucson, AZ 85733-4156 Whittier, CA 90603-1038
(520) 770-1541 (562) 943-3335
http://www.tucsonautism.org
Kern Autism Network: ASA
9501 Lokern Road
ARKANSAS McKittrick, CA 93251-9746

Arkansas Chapter, Autism Society Los Angeles Chapter: Autism Society


of America of America
2001 Pershing Circle, F-13 P.O. Box 8600
North Little Rock, AR 72114-1841 Long Beach, CA 90808-0600
(501) 682-9930 (562) 804-5556

184
Appendix III 185

Northern California, Autism Society of (818) 207-0135


976 Mangrove Avenue http://www.VCAS.info
Chico, CA 95926-3950
(530) 897-0900
COLORADO
North San Diego County (CA) Chapter ASA
P.O. Box 131161 Boulder County (CO) Chapter ASA
Carlsbad, CA 92013-1161 194 Mesa Court
(760) 479-1420 Louisville, CO 80027-9401
http://www.nccasa.com (720) 272-8231
http://www.autismboulder.org
Orange County Chapter, Autism Society
of America Colorado Chapter, Autism Society of
5591 Yuba Avenue America
Westminster, CA 92683-2843 701 S. Logan Street, Suite 103
(714) 799-7500 Denver, CO 80209-4169
http://www.asaoc.org (720) 214-0794
San Diego Chapter, Autism Society http://www.autismcolorado.org
of America Pikes Peak (CO) Chapter ASA
P.O. Box 420908 1813 Chapel Hills Drive
San Diego, CA 92142-0908 Colorado Springs, CO 80920-3714
(619) 298-1981 (719) 630-7072
http://www.sd-autism.org
San Francisco Bay Chapter, Autism Society CONNECTICUT
of America
1360 Sixth Avenue Autism Society of Connecticut - ASCONN
Belmont, CA 94002-3818 P.O. Box 1404
(650) 637-7772 Guilford, CT 06437
http://sfautismsociety.virtualave.net (888) 453-4975
San Gabriel Valley Chapter, Autism Society http://www.autismsocietyofct.org
of America Natchaug Region (CT) Chapter ASA
P.O. Box 1755 95 Bolton Branch Road
Glendora, CA 91740-1755 Coventry, CT 06238-1002
(626) 580-8927 (860) 742-5195
Santa Barbara (CA) Chapter South Central Connecticut Chapter,
P.O. Box 630 Autism Society of America
Carpinteria, CA 93014-0630 20 Washington Avenue
(805) 560-3762 North Haven, CT 06473-2343
http://www.asasb.org (203) 235-7629
Tulare County (CA) Chapter ASA
4125 W. Noble Avenue, #209 WASHINGTON, D.C.
Visalia, CA 93277-1662
(559) 747-2126 District of Columbia Chapter, Autism Society
Ventura County Chapter, Autism Society of America
of America 5167 Seventh Street NE
P.O. Box 2690 Washington, DC 20011-2624
Ventura, CA 93002-2690 (202) 561-5300
186 The Encyclopedia of Autism Spectrum Disorders

DELAWARE (727) 786-8075


http://web.tampabay.rr.com/autism
Autism Society of Delaware, Inc.
5572 Kirkwood Highway Jacksonville (FL) Chapter ASA
Wilmington, DE 19808 1526 University Boulevard West, #235
(302) 472-2638 Jacksonville, FL 32217-2006
http://www.delautism.org (904) 680-5104

Manasota (FL) Chapter ASA


FLORIDA P.O. Box 18934
Sarasota, FL 34276-1934
Autism Association of Northeast Florida (941) 426-9059
http://www.manasotaautism.com
Helps those concerned with autism spectrum
disorder to utilize current resources and to Marion County (FL) Chapter ASA
promote awareness, advocacy, and education P.O. Box 65
within the community. Reddick, FL 32686-0065
(352) 591-3120
Orlando Hispanic Autism Parent Support
Group Miami-Dade County (FL) Chapter, Autism
Nuestra Misión: Mantener informada a la Society of America
comunidad sobre los recursos en el área central de P.O. Box 831405
Florida. Miami, FL 33283-1405
(305) 969-3900
Broward County (FL) Chapter ASA e-mail: rlpvega@aol.com
P.O. Box 450476
Sunrise, FL 33345-0476 Palm Beaches Chapter, Autism Society
(954) 577-4141 of America
901 NW Fourth Avenue
Emerald Coast (FL) Chapter ASA
Boca Raton, FL 33432
916 Lido Circle East (561) 688-9010
Niceville, FL 32578-4403
(850) 897-2252 Panhandle (FL) Chapter, Autism Society
Florida Chapter, Autism Society of America
of America 4148 N. Cambridge Way
P.O. Box 970646 Milton, FL 32571-7368
Pompano Beach, FL 33097-0646 (850) 995-0003
(954) 349-2820 http://www.autismpensacola.org
http://www.autismfl.com South Florida Chapter, Autism Society
Greater Orlando (FL) Chapter ASA of America
4743 Hearthside Drive 21212 Harbor Way, Apartment 143
Orlando, FL 32837-5445 Miami, FL 33180-3524
(407) 855-0235 (305) 681-0407
http://www.asgo.org
Southwest Florida Chapter, Autism Society
Gulf Coast Chapter, Autism Society of America
of America 1259 Shannondale Drive
P.O. Box 21105 Fort Myers, FL 33913
Saint Petersburg, FL 33742-1105 (239) 768-0723
Appendix III 187

GEORGIA (630) 691-1270


http://www.autismillinois.org
Central Georgia Chapter, Autism Society Central Illinois Chapter ASA (ASACIC)
of America P.O. Box 8781
523 Pinecrest Road Springfield, IL 62791
Macon, GA 31204-1764 (877) 311-7703
(478) 745-4994 http://www.asacic.org
The Greater Georgia Chapter, Autism Society Chicago Southside (IL) Chapter ASA
of America 21363 Old North Church Road
2971 Flowers Road South, Suite 140 Frankfort, IL 6