The Role of Developmental Histories in the Screening and

Diagnosis of Autism Spectrum Disorders

Cindy Plotts and Jo Webber
Southwest Texas State University

The incidence of diagnosed cases of autism spectrum disorder (ASD) has increased dramatically over the
past decade. This may indicate a larger population of individuals with ASD, and may also be the result of
better diagnostic definitions and procedures. Early accurate diagnosis is particularly important for children
with ASD because of the documented benefits of early educational interventions. One very important
component of an ASD screening and diagnostic process is a developmental history. Not only can this type
of information assist with diagnosis, but the process of interviewing parents and primary caretakers can
provide opportunities for establishing a working alliance with the family, inform further assessment deci-
sions, and facilitate treatment and intervention for coexisting and comorbid disorders. Both structured
and semi-structured formats are available for obtaining developmental histories. Personnel who are
assigned to obtain developmental histories need strong interviewing skills and extensive knowledge about
the diagnostic indicators of ASD.

Issues involved in the screening and diag-
nosis of ASD have received national atten-
tion in the past decade. For example, in 1998
the National Institutes of Health Autism
Coordinating Committee held a working con,
ference on the State of the Science in Autism
Screening and Diagnosis to specify core stan-
dards and guidelines for such diagnoses
tify students with ASD, and the broader ASD
definition put forth by the American
Psychiatric Association (APA; Sack, 1999).
Finally, the increased incidence may also be
due to better diagnostic procedures. In any
case, the importance of reliable diagnosis is
important if the actual incidence of ASD is to
be determined and if crucial effective treat-

(Bristol-Power & Spinella, 1999). One reason ment is to be recommended.

for this national attention may be the sharp
rise in the incidence of children identified
with ASD in the past decade. U.S.
Department of Education statistics show that
in the 1992-93 school year, the first year that
school districts were asked to report the num-
ber of students with autism, 15,580 students,
Developmental Histories
An important component in screening for
and diagnosing ASD is a thorough develop-
mental history. Filipek and her colleagues
( 1999 ) recommend as standard practice para-
meters that screening and diagnosis for ASD

ages 6-21, were identified as having autism.
By comparison, during the 1998-99 school
year, 53,561 students, ages 6-21, were so iden-
tified (a 244% increase). It is speculated that
the rise in incidence may not just indicate
more children with autism but might have to
do with more public awareness, an increased
desire by school personnel to accurately iden-
be conducted at two levels: (a) routine devel-
opmental surveillance and screening for
autism, and (b) diagnosis and evaluation of
ASD. Developmental assessment is recom-
mended at both levels. In fact, developmental
assessment is the primary tool for identifying
infants and toddlers at risk of ASD and other
developmental disorders at Level One. Filipek

19
20
et al. recommend that Level One assessments
include information pertaining to early lan-
guage and cognitive development, socializa-
tion problems, associated medical disorders,
and possible genetic predictors (i.e., family
history of related disorders). It is further rec-
ommended that these initial developmental
screenings be conducted by primary care
providers during well-baby examinations.
&dquo;Red flags&dquo; that might indicate possible ASD
in infants and toddlers include lack of eye
contact, failure to respond to name, inatten-
tion to pointing or showing by the parent,
language and social delays, behavioral differ-
ences (i.e., tantrums, obsessive use of objects),
and regression in language or social skills.
Children who, through screening, are found
to be at risk of ASD or other developmental
disorders should be referred to Early Childhood
Intervention (ECI) programs or school district
personnel for Level Two diagnostic workups
(Filipek, Accardo, Baranek, Cook, Dawson, &
Gordon, 1999). At this point, the task is to
diagnose ASD as distinct from other develop-
mental disabilities, to identify coexisting disor-
ders that might need treatment (e.g., mental
retardation, obsessive-compulsive disorder, and
medical conditions such as epilepsy), and to
obtain enough information for effective educa-
tional program recommendations. During this
diagnostic phase, thorough developmental his-
tories are recommended, including information
obtained from parents through structured inter-
views, questionnaires, checklists and rating
scales directly related to ASD symptomology. It
is now believed that many symptoms of ASD
appear in infancy (Mars, Mauk, & Dowrick,
1998) while additional symptoms gradually
appear in early childhood. A thorough devel-
opmental history is needed in order to validate
unique behavioral and developmental patterns
over time so that misdiagnosis is avoided and
crucial effective educational treatment can
begin as early as possible (Dawson & Osterling,
1997; Fine, 2001).
In the next sections we will discuss strate-
gies for collecting developmental history
information as it relates to ASD screening
and diagnosis, review structured and semi-
structured assessment formats, and discuss
diagnostic indicators of ASD.
Obtaining Developmental Histories
Several may be advanced for
reasons
obtaining adetailed developmental history
from parents, or if necessary, other primary
caretakers, in the early stages of the diagnos-
tic process. First, the assessment process
allows an opportunity to establish trust and a
working alliance that will facilitate both
accurate diagnoses and appropriate interven-
tion. Second, parents have unique, first-hand
information not available from other informa-
tion sources that may inform further assess-
ment decisions, such as test selection. Third,
parent information may also clarify the devel-
opmental course of the ASD symptoms,
including features that may contribute to dif-
ferential diagnosis or identification of comor-
bid disorders. Finally, gaining preliminary
knowledge of family awareness of ASD, stress
levels, and resources will likely aid in further
family evaluation and intervention.
As observed by Filipek et al. ( 1999), par-
ents are the most important resource available
to professionals attempting to diagnose and
intervene with ASD. Given the clear advan-
tages of forming a working relationship with
families early in the diagnostic process, it is
recommended that a thorough developmental
history be obtained through a face-to-face
interview with the parents or primary care-
takers. While interviews may be supplement-
ed with appropriate background question-
naires or developmental checklists (Newsom
& Hovanitz, 1997; Sattler, 1998), these addi-
tional techniques do not substitute for direct
parent contact during which responses can be
probed and clarified. Further, the face-to-face
interview allows professionals to develop a
supportive, personal approach toward the
child and family that may facilitate fol-
lowthrough from diagnosis to intervention.

Assessment Sequence
Assessment professionals must decide at
what point in the process a thorough devel-
opmental history should be obtained. The
two-level algorithm recommended by Filipek
et al. (1999) provides for developmental his-
tory screening through checklists and specific
developmental probes at Level One. While
this screening should cover major areas of
development, it would not likely comprise a
full and thorough developmental history due
to time and purpose constraints. At this level,
general background questionnaires and/or
checklists are usually completed in advance
by parents and followup questions are asked
during the medical examination. If &dquo;red flags&dquo;
for ASD are observed, immediate formal
screening for ASD is needed (see Charak &
Stella, this issue) along with a formal audio-
logical assessment and screening for lead, if
picais present.
Once a child is identified as at risk, Level
Two assessment procedures should be initiated
immediately, including a detailed develop-
mental history. The assessment professional
should retrieve any available records that will
clarify diagnostic issues, including prior med-
ical, neurological, psychological, or
speech/language evaluation reports. Parents
often inform interviewers of such prior assess-
ments only when directly asked. Porter,
Goldstein, Galil, and Carel (1992) reported
that many children with autism are identified
only after evaluation at clinics specializing in
leaming disabilities or attention-deficit/hyper-
activity disorder (ADHD), underscoring the
need for assessment personnel to gather infor-
mation from prior evaluations. Other poten-
tially relevant sources of information that may
be collected prior to or following the interview
to help parents recall details of their child’s
development include home video recordings
(Osterling & Dawson, 1994), baby books
describing developmental milestones, and
records of routine pediatric examinations. A
well-organized parent interview contributes
21
substantially to the parents’ perception of
their centrality in the assessment and inter-
vention process and may preclude redundant
or insufficient assessment that complicates the
diagnostic process.
Assessment professionals must select from
a number of observation forms, tests, and test
batteries to complete the individual child’s
developmental profile at Level Two, the diag-
nosis and evaluation of ASD. Areas of func-
tioning that must be formally assessed include
cognitive, adaptive behavior, speech and lan-
guage, academic achievement (or readiness),
motor, and behavior. Neuropsychological
assessment may incorporate some of these
areas and explore memory, executive func-
tion, sensory function, or other specific abili-
ties as well. Family resources and stress levels
should also be evaluated.
Available tests vary considerably with
respect to age and developmental levels
assessed, content, time required, materials,
and procedures. The information obtained
through the developmental history, including
reports of any prior testing, may be used to
guide instrument selection and thus tailor the
assessment to the child’s individual pattern of
strengths and deficits. Further, parents may be
able to identify reinforcers that will promote
cooperation with formal testing. Expanded
medical, neurological, laboratory evalua-
or
tion may also be needed (Filipek et al., 1999).
The desired outcome of tailoring the diagnos-
tic and evaluation procedures to the specific
child is a thorough, yet efficient diagnostic
process.
Interviewer Preparation
Professionals who obtain the develop-
mental history must be trained in the assess-
ment and diagnosis of ASD, including evalu,
ation of possible comorbid disorders and issues
of differential diagnoses. Interviewers should
also be trained in interviewing techniques,
including active listening skills. Training for
conducting clinical interviews is beyond the
22
scope of this discussion; however, Lentz and
Wehmann (1995) and Sattler (1998) provide
excellent guidelines for preparing for and con-
ducting interviews. Some of the active listen-
ing skills that characterize an effective inter-
view include:
~
Focusing on the interviewee and attempt-
ing to understand his or her experience
~
Maintaining good eye contact without
staring
~
Reflecting the interviewee’s content
through careful paraphrasing
~
Clarifying with specific followup ques-
tions when appropriate
~
Allowing the interviewee to finish before
speaking
~
Formulating open-ended questions to
address general areas for assessment
~
Attending to the interviewee’s verbal and
nonverbal behaviors (e.g., facial expres-
sions and body posture)
~
Varying from structured interview ques-
tions to accommodate the interviewee’s
and need for expression of experi-
style
and feelings
ences
Interviewing considerations also include
setting clear goals, structuring interviews to
meet objectives, and being aware of potential
biases when interviewing (Lentz &
Wehmann, 1995). Assessment professionals
who have not been trained to conduct parent
interviews should do so only with supervision
by a professional with appropriate training
and experience. The preparation and skill of
the interviewer may dramatically affect the
degree of bonding achieved with the family as
the assessment proceeds (Sattler, 1998).
Informants
Ideally, one or both of the child’s biological
parents provide the developmental history.
The parents are most likely to have detailed
information regarding prenatal, birth, and
postnatal history. They may also have rele-
vant information regarding the medical, psy-
chiatric,or educational history of immediate
and extended family members that was not
revealed on a background questionnaire or
other screening form. Such information can
often be drawn out in an interview when par-
ents are encouraged through active listening
techniques and probes to share information
they may not have recognized as relevant.
When the biological parents are not available
or are unable to provide the developmental
history, the assessment professional should try
to interview other primary caretakers, includ-
ing custodial family members, adoptive or fos-
ter parents, and other caregiving adults; for
example, when the child has spent significant
time in a child care or institutional facility.
General Guidelines
The developmental history may be
obtained through a specific interview instru-
ment such as those discussed in the next sec-
tion, or through an interview format designed
from a background questionnaire or other
information form used in a certain setting,
such as a school district (Sattler, 1998). In
either case, several major areas of the child’s
history, presented in Table 1, should be
addressed. The interview instrument, back-
ground form, or interview guidelines selected
will provide specific items to address in the
developmental history.
Parents of children with ASD often report
that the first year of life was the best year of
the child’s development (Sattler, 1998).
During the second year, they may begin to
worry that their child is &dquo;different&dquo; with par-
ents often sensing something is &dquo;wrong&dquo; by 12
to 18 months of age. ASD is often not diag-
nosed until two to three years of age after
speech and behavioral symptoms become
more evident (Filipek et al., 1999). Speech
delay is the most common developmental
concern expressed by parents of children
between the ages of one and three years.
Other frequently expressed concerns include
atypical speech patterns (e.g., echolalia), how

Table 1 Developmental History: Areas to Assess
the child relates others and emotional expres-
sion. Parents may also report atypical respons-
es to sensorystimulation, insistence on same-
ness, ritualistic behavior, severe tantrums, and
problems with eating, sleeping, and toilet
training (Sattler, 1998). The spectrum of
atypical behaviors evolves with advancing
developmental and chronological age.
Consequently, parents and interviewers may
benefit from aids to recall early development,
including home videos, baby books with
developmental milestones, and pediatric
records of well-child visits.
With respect to information about family
history, interviewers should determine
23
whether there is any family history for tuber-
ous sclerosis, Fragile X Syndrome, and mental
retardation. All of these conditions have been
associated with autism (Filipek et al., 1999)
and have the implications for genetic or chro-
mosomal evaluation. Child symptoms or fam-
ily history of seizure disorder should also trig-
ger referral for further medical evaluation.
Through their responses to questions dur-
ing the interview, parents may reveal consid,
erable information regarding stress levels and
coping strategies around their child’s difficul-
ties. Even though related questions may not
be included in structured developmental his-
tory protocols, interviewers should attend
24
closely to such information, which may guide
later assessment of family status and resources
for programming purposes.
Instruments for Collecting Developmental
H istory
Diagnostic Interview Procedures
The Parent Interviews for Autism (PIA;
Stone & Hogan, 1993) is a structured inter-
view designed for children under six years of
age. The PIA consists of 118 items organized
into the following 11 dimensions: Social
Relating, Affective Responses, Motor
Imitation, Peer Interactions, Object Play,
Imaginative Play, Language Understanding,
Nonverbal Communication, Motoric
Behaviors, Sensory Responses, and Need for
Sameness. Items are phrased as questions
about observable behaviors and reflect both
normal and atypical development. The parent
is asked to rate the frequency of each behav-
ior on a scale from 1 (&dquo;almost never&dquo;) to 5
(&dquo;almost always&dquo;). The PIA takes about 45
minutes to administer.
Concurrent validity was assessed as signifi-
cant but moderate with the Childhood Autism
Rating Scale (CARS; Schopler, Reichler, &
Rochen-Renner, 1988), a widely employed
observation rating scale. Test-retest reliability
across two weeks with the parents of 29 chil-
dren with developmental disabilities, of
whom half had autism, found correlations of
.70 or greater for seven of the 11 dimensions,
and .93 for the total scores. Discriminant
validity was demonstrated by significant
group differences between children with men-
tal retardation and autism and those who did
not have autism for the total PIA score as well
as six of the dimension scores (Relating,
Imitation, Peer Interactions, Imaginative
Play, Language Understanding, and
Nonverbal Communication). The PIA does
not provide cutoff scores for diagnostic classi-
fication.
According to Newsom and Hovanitz
(1997), the PIA appears to fulfill its purpose
of obtaining clinically relevant information
during a parent interview. The format is high-
ly structured, thus emphasizing efficiency and
uniformity of administration over clinical
flexibility in questioning and responding to
parental concerns.
The Autism Diagnostic Interviea.u-Revised
(ADI-R; Lord, Rutter, & Le Couteur, 1994) is
another comprehensive structured interview
protocol for use with a child’s principal care-
giver. The ADI-R probes for autistic symp-
toms in reciprocal social interaction, commu-
nication, and repetitive, stereotyped behav-
iors, with abnormalities in at least one of
these areas occurring before 36 months of age.
Many items probe for developmental
deviance rather than developmental delay.
The structure of this interview parallels
Diagnostic and Statistical Manual of Mental
Disorders - 4th Edition (DSM-IV; APA, 1994)
diagnostic criteria and provides definitive
threshold scores for the diagnosis of autism.
Interrater reliability was reported in a study
of videotaped interviews with the mothers of
10 children with autism and 10 children with
mental retardation or language impairments
three to five years of age (Lord et al., 1994).
Percentages of agreement on diagnosis across
four trained medical or graduate students who
were unaware of the children’s diagnoses
ranged from 88% to 96%. Validity was equal-
ly impressive, with all but 1 of 25 clinically
diagnosed children with autism being correct-
ly classified by the ADI-R algorithm criteria
and only 2 of the 25 children with mental
retardation/language impairment misclassi-
fied as having autism.
While the ADI-R has received good
reviews and may currently be the instrument
of choice for diagnosing young autistic chil-
dren, Newsom and Hovanitz (1997) note that
further research is needed with (a) larger sam-
ples, (b) older children and adults, and (c)
individuals who have other pervasive devel-
opmental disorders. The ADI-R takes about
one hour to administer and requires specific
training and validation procedures, which

may limit its useby primary care or clinical
specialty professionals (Filipek et al., 1999).
The same limitations would seem to apply to
school assessment professionals.
Semi-Structured Interviews
Professionals who conduct assessments in
schools, clinics, or agency settings frequently
complete parent interviews and developmen-
tal histories without the use of a specific inter-
view protocol. Often, such interviews are
developed from background questionnaires
supplied by the facility and are considered
semi-structured. In such instances, the utility
and validity of the information gathered from
the interview is largely dependent upon the
interviewer’s skills and knowledge.
Sattler (1998) provides a helpful organiz-
ing framework for a semi-structured interview
with a parent of a child who may have a per-
vasive developmental disorder. His interview
format includes 353 questions, including fol-
lowups and probes, that apply primarily to
children who are at least toddler age. The
areas in this interview include Developmental
History, Social Behavior (as Infant, Toddler,
and School-Aged Child), Peer Interactions,
Affective Responses, Communication
Ability, Using Senses and Responding to
Environment, Movement, Gait, and Posture,
Need for Sameness, Play and Amusements,
Special Skills, Self-Care, Sleep, Behavior
Problems, School and Learning Ability, and
Domestic and Practical Skills. While no psy-
chometric data are available on this semi-
structured interview, the specificity and detail
regarding ASD features and the sample ques-
tions provide a good framework for the devel-
opmental history interview.
Filipek et al. (1999) provide descriptions of
&dquo;red flag&dquo; parental concerns and associated
developmental probes that can be incorporat-
ed into a semi-structured developmental his-
tory interview. Finally, it is recommended that
regardless of which instrument is selected for
obtaining a thorough developmental history,
25
the interviewer informally evaluate the par-
ents’ stress levels, coping strategies, and
resources for intervention planning purposes.
Diagnostic Indicators for ASD
General Considerations
The differentiation of ASD from other dis-
orders is accomplished by analyzing the data
collected from various evaluations across dis-
ciplines. Thorough developmental history
protocols incorporate the diagnostic criteria
from the DSM-IV (APA, 1994) and DSM-IV
TR (APA, 2000), which address qualitative
impairments in social interaction and com-
munication, along with restrictive, repetitive,
and stereotypical patterns of behavior. Within
this framework, they probe for related specific
behaviors from birth to the present. Since
diagnostic criteria for ASD specify ages at
onset for certain criteria, the developmental
history is especially suited to gathering infor-
mation needed for differential diagnosis from
infancy through preschool, at which time
more formal and standardized assessment
techniques become available.
Improved diagnosis of potentially treatable
disorders or problems associated with autism,
including epilepsy, metabolic disorders, inges-
tion of lead, self-injurious behavior, anxiety,
depression, and hyperactivity, may signifi-
cantly improve the outcome and quality of
life for individuals with ASD (Bristol-Power
& Spinella, 1999). Information collected
from the developmental history may clarify
the presence of such problems and contribute
to earlier identification and treatment of asso-
ciated disorders or problem behaviors.
Conclusion
Over the past decade the incidence of chil-
dren identified with ASD has increased sig-
nificantly. Parallel to this rise in incidence has
been a national focus on early identification
of ASD through improved screening and
diagnostic procedures. One very important
component of the diagnostic assessment
26
process is developmental history. A thor-
a current
ough developmental history should be
obtained early in the diagnostic and evalua-
tion process when
screening techniques indi-
cate that a child is at risk for ASD.
Obtaining
an organized developmental history through a
structured interview with the child’s parents
or primary caretakers can serve several impor-
tant purposes, including establishing trust and
a working alliance with parents, informing
further individualized assessment through tai-
lored test selection, increasing the efficiency
and depth of the diagnostic and evaluation
process, and facilitating intervention and
treatment for associated symptoms or coexist-
ing disorders. Professionals who obtain devel-
opmental histories must have strong inter-
viewing skills as well as expert knowledge
about assessment for ASD. The PIA (Stone &
Hogan, 1993) and the ADI-R (Lord, et al.,
1994) appear to be psychometrically sound
instruments that provide a structured diagnos-
tic interview for assessing ASD symptomatol-
ogy. Other structured and semi-structured
interview formats are also available, but are
less comprehensive or less specifically tailored
to the diagnosis of ASD. To be optimally use-
ful, it is recommended that developmental
histories be obtained in a face-to-face inter-
view.
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