What Is Autism?

There is no one type of autism, but many

Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by
challenges with social skills, repetitive behaviors, speech and nonverbal communication. According to the
Centres for Disease Control, autism affects an estimated 1 in 44 children in the United States today.

We know that there is not one autism but many subtypes, most influenced by a combination of genetic
and environmental factors. Because autism is a spectrum disorder, each person with autism has a distinct
set of strengths and challenges. The ways in which people with autism learn, think and problem-solve can
range from highly skilled to severely challenged. Some people with ASD may require significant support in
their daily lives, while others may need less support and, in some cases, live entirely independently.

Several factors may influence the development of autism, and it is often accompanied by sensory
sensitivities and medical issues such as gastrointestinal (GI) disorders, seizures or sleep disorders, as well as
mental health challenges such as anxiety, depression and attention issues.

Signs of autism usually appear by age 2 or 3. Some associated development delays can appear even earlier,
and often, it can be diagnosed as early as 18 months. Research shows that early intervention leads to
positive outcomes later in life for people with autism.

* In 2013, the American Psychiatric Association merged four distinct autism diagnoses into one
umbrella diagnosis of autism spectrum disorder (ASD). They included autistic disorder, childhood
disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger
syndrome.

One of the most important things you can do as a parent or caregiver is to learn the early signs of autism
and become familiar with the typical developmental milestones that your child should be reaching.
What are the signs of autism?
The autism diagnosis age and intensity of autism’s early signs vary widely. Some infants show hints in their
first months. In others, behaviors become obvious as late as age 2 or 3.

Not all children with autism show all the signs. Many children who don’t have autism show a few. That’s
why professional evaluation is crucial.

The following may indicate your child is at risk for an autism spectrum disorder. If your child exhibits any of
the following, ask your pediatrician or family doctor for an evaluation right away:

By 6 months

• Few or no big smiles or other warm, joyful and engaging expressions

• Limited or no eye contact

By 9 months

• Little or no back-and-forth sharing of sounds, smiles or other facial expressions

By 12 months
• Little or no babbling
• Little or no back-and-forth gestures such as pointing, showing, reaching or waving
• Little or no response to name

By 16 months

• Very few or no words

By 24 months

• Very few or no meaningful, two-word phrases (not including imitating or repeating)

At any age

• Loss of previously acquired speech, babbling or social skills

• Avoidance of eye contact
• Persistent preference for solitude
• Difficulty understanding other people’s feelings
• Delayed language development
• Persistent repetition of words or phrases (echolalia)
• Resistance to minor changes in routine or surroundings
• Restricted interests
• Repetitive behaviors (flapping, rocking, spinning, etc.)
• Unusual and intense reactions to sounds, smells, tastes, textures, lights and/or colors

What are the DSM-5 diagnostic criteria for autism?

In 2013, the American Psychiatric Association released the fifth edition of its Diagnostic and Statistical
Manual of Mental Disorders (DSM-5).

The DSM-5 is now the standard reference that healthcare providers use to diagnose mental and behavioral
conditions, including autism.

By special permission of the American Psychiatric Association, you can read the full-text of the new
diagnostic criteria for autism spectrum disorder and the related diagnosis of social communication
disorder below.
DSM-5 Autism Diagnostic Criteria
A. Persistent deficits in social communication and social interaction across multiple contexts, as
manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):

1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of
normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate
or respond to social interactions.
2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly
integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or
deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal
communication.
3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties
adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making
friends; to absence of interest in peers.

Specify current severity: Severity is based on social communication impairments and restricted repetitive
patterns of behavior. (See table below.)

B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the
following, currently or by history (examples are illustrative, not exhaustive; see text):

1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies,
lining up toys or flipping objects, echolalia, idiosyncratic phrases).
2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior
(e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals,
need to take same route or eat food every day).
3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or
preoccupation with unusual objects, excessively circumscribed or perseverative interest).
4. Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g.,
apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive
smelling or touching of objects, visual fascination with lights or movement).

Specify current severity:

Severity is based on social communication impairments and restricted, repetitive patterns of

behavior. (See table below.)
C. Symptoms must be present in the early developmental period (but may not become fully manifest
until social demands exceed limited capacities or may be masked by learned strategies in later life).

D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of
current functioning.

E. These disturbances are not better explained by intellectual disability (intellectual developmental
disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently
co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social
communication should be below that expected for general developmental level.

Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or
pervasive developmental disorder not otherwise specified should be given the diagnosis of autism
spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do
not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic)
communication disorder.

Specify if:

• With or without accompanying intellectual impairment

• With or without accompanying language impairment
o (Coding note: Use additional code to identify the associated medical or genetic condition.)
• Associated with another neurodevelopmental, mental, or behavioral disorder
o (Coding note: Use additional code[s] to identify the associated neurodevelopmental, mental, or
behavioral disorder[s].)
• With catatonia
• Associated with a known medical or genetic condition or environmental factor
Table: Severity levels for autism spectrum disorder

Severity
Social communication Restricted, repetitive behaviors
level
Severe deficits in verbal and nonverbal social
communication skills cause severe
impairments in functioning, very limited
Level 3 initiation of social interactions, and minimal Inflexibility of behavior, extreme difficulty
"Requiring response to social overtures from others. For coping with change, or other
very example, a person with few words of restricted/repetitive behaviors markedly
substantial intelligible speech who rarely initiates interfere with functioning in all spheres. Great
support” interaction and, when he or she does, makes distress/difficulty changing focus or action.
unusual approaches to meet needs only and
responds to only very direct social approaches

Marked deficits in verbal and nonverbal social

Inflexibility of behavior, difficulty coping with
communication skills; social impairments
change, or other restricted/repetitive
Level 2 apparent even with supports in place; limited
behaviors appear frequently enough to be
"Requiring initiation of social interactions; and reduced
obvious to the casual observer and interfere
substantial or abnormal responses to social overtures
with functioning in a variety of contexts.
support” from others. For example, a person who
Distress and/or difficulty changing focus or
speaks simple sentences, whose interaction is
action.
limited to narrow special interests, and how
has markedly odd nonverbal communication.
 Without supports in place, deficits in social
communication cause noticeable
The inflexibility of behavior causes
impairments. Difficulty initiating social
significant interference with functioning in
interactions, and clear examples of atypical or
one or more contexts. Difficulty switching
unsuccessful response to social overtures of
between activities. Problems of organization
Level 1 others. May appear to have decreased
and planning hamper independence.
"Requiring interest in social interactions. For example, a
support” person who is able to speak in full sentences
and engages in communication but whose to-
and-fro conversation with others fails, and
whose attempts to make friends are odd and
typically unsuccessful.

What is the DSM-5?

The American Psychiatric Association publishes the Diagnostic and Statistical Manual of Mental
Disorders (DSM) to guide healthcare professionals diagnosing mental health conditions. The manual’s fifth
edition – DSM-5 – took effect in May 2013.

Why was the new edition needed?

The American Psychiatric Association periodically updates the DSM to reflect new understanding of mental
health conditions and the best ways to identify them.

The goals for updating the criteria for diagnosing autism included:

• More accurate diagnosis

• Identification of symptoms that may warrant treatment or support services
• Assessment of severity level
How does the DSM-5 change the way autism is diagnosed?
Six major changes included:

1. Four previously separate categories of autism consolidated into one umbrella diagnosis of “autism
spectrum disorder.”

The previous categories were:

• Autistic disorder
• Asperger syndrome
• Childhood disintegrative disorder
• Pervasive developmental disorder-not otherwise specified (PDD-NOS)

2. Consolidation of three previous categories of autism symptoms

• Social impairment
• Language/communication impairment and
• Repetitive/restricted behaviors

into two categories of symptoms

• Persistent deficits in social communication/interaction and

• Restricted, repetitive patterns of behavior

3. The addition of sensory issues as a symptom under the restricted/repetitive behavior category. This
includes hyper- or hypo-reactivity to stimuli (lights, sounds, tastes, touch, etc.) or unusual interests in
stimuli (staring at lights, spinning objects, etc.)

4. A severity assessment scale (levels 1-3) based on level of support needed for daily function.

5. Additional assessment for:

• Any known genetic causes of autism (e.g. fragile X syndrome, Rett syndrome)
• Language level
• Intellectual disability and The presence of autism-associated medical conditions (e.g. seizures,
anxiety, gastrointestinal disorders, disrupted sleep)

6. Creation of a new diagnosis of social communication disorder, for disabilities in social

communication without repetitive, restricted behaviors.
What are the new criteria for diagnosing autism?
The DSM-5 criteria for autism fall under two categories

In addition, clinicians are asked to rate the severity of these problems, based on the level of daily support
they require.

How will these DSM-5 changes affect people already

diagnosed with Asperger syndrome, PDD-NOS or other
previous autism categories?
The DSM-5 states, “Individuals with a well-established DSM-IV diagnoses of autistic disorder, Asperger’s
disorder or pervasive developmental disorder not otherwise specified should be given the diagnosis of
autism spectrum disorder.”

What if I or my child want to keep the diagnosis of Asperger

syndrome?
Many people strongly identify with their diagnosis of Asperger syndrome. Healthcare providers can still
indicate a diagnosis of Asperger syndrome (or another previously used autism category) in a patient’s
medical record, alongside the current DSM-5 coding for “autism spectrum disorder.” Colleges and school
districts may vary in their policies for educational records.

What is the new diagnosis of social communication disorder?

Who will it affect?
This new diagnosis applies to people who have persistent problems with the social use of language,
but don’t have restricted interests or repetitive behaviors.

Some people who would have previously received a diagnosis of PDD-NOS may now receive a diagnosis of
social communication disorder. However, this should apply only to newly diagnosed people. It should not
be applied retroactively to someone already diagnosed with PDD-NOS under the DSM-IV criteria.
Is social communication disorder on the autism spectrum?
No. Social communication disorder is considered a communication disorder. People who have the
symptoms of social communication disorder in addition to restricted, repetitive behaviors may receive a
diagnosis of autism instead.

Autism Prevalence
• In 2021, the CDC reported that approximately 1 in 44 children in the U.S. is diagnosed with an autism
spectrum disorder (ASD), according to 2018 data.
o 1 in 27 boys identified with autism
o 1 in 116 girls identified with autism
• Boys are four times more likely to be diagnosed with autism than girls.
• Most children were still being diagnosed after age 4, though autism can be reliably diagnosed as early as age
2.
• 31% of children with ASD have an intellectual disability (intelligence quotient [IQ] <70), 25% are in the
borderline range (IQ 71–85), and 44% have IQ scores in the average to above average range (i.e., IQ >85).
• Autism affects all ethnic and socioeconomic groups.
• Minority groups tend to be diagnosed later and less often.
• Early intervention affords the best opportunity to support healthy development and deliver benefits across
the lifespan.
• There is no medical detection for autism.

What causes autism?

• Research indicates that genetics are involved in the vast majority of cases.
• Children born to older parents are at a higher risk for having autism.
• Parents who have a child with ASD have a 2 to 18 percent chance of having a second child who is also
affected.
• Studies have shown that among identical twins, if one child has autism, the other will be affected about 36
to 95 percent of the time. In non-identical twins, if one child has autism, then the other is affected about 31
percent of the time.
• Over the last two decades, extensive research has asked whether there is any link between childhood
vaccinations and autism. The results of this research are clear: Vaccines do not cause autism.
Intervention and Supports

• Early intervention can improve learning, communication and social skills, as well as underlying brain
development.
• Applied behavior analysis (ABA) and therapies based on its principles are the most researched and
commonly used behavioral interventions for autism.
• Many children affected by autism also benefit from other interventions such as speech and occupational
therapy.
• Developmental regression, or loss of skills, such as language and social interests, affects around 1 in 5
children who will go on to be diagnosed with autism and typically occurs between ages 1 and 3.

Associated Challenges

• An estimated 40 percent of people with autism are nonverbal.

• 31% of children with ASD have an intellectual disability (intelligence quotient [IQ] <70) with significant
challenges in daily function, 25% are in the borderline range (IQ 71–85).
• Nearly half of those with autism wander or bolt from safety.
• Nearly two-thirds of children with autism between the ages of 6 and 15 have been bullied.
• Nearly 28 percent of 8-year-olds with ASD have self-injurious behaviors. Head banging, arm biting and skin
scratching are among the most common.
• Drowning remains a leading cause of death for children with autism and accounts for approximately 90
percent of deaths associated with wandering or bolting by those age 14 and younger.

Associated Medical & Mental Health Conditions

• Autism can affect the whole body.

• Attention Deficient Hyperactivity Disorder (ADHD) affects an estimated 30 to 61 percent of children with
autism.
• More than half of children with autism have one or more chronic sleep problems.
• Anxiety disorders affect an estimated 11 to 40 percent of children and teens on the autism spectrum.
• Depression affects an estimated 7% of children and 26% of adults with autism.
• Children with autism are nearly eight times more likely to suffer from one or more chronic gastrointestinal
disorders than are other children.
• As many as one-third of people with autism have epilepsy (seizure disorder).
• Studies suggest that schizophrenia affects between 4 and 35 percent of adults with autism. By contrast,
schizophrenia affects an estimated 1.1 percent of the general population.
 • Autism-associated health problems extend across the life span – from young children to senior
citizens. Nearly a third (32 percent) of 2 to 5 year olds with autism are overweight and 16 percent are obese.
By contrast, less than a quarter (23 percent) of 2 to 5 year olds in the general population are overweight and
only 10 percent are medically obese.
• Risperidone and aripiprazole, the only FDA-approved medications for autism-associated agitation and
irritability.

Caregivers & Families

• On average, autism costs an estimated $60,000 a year through childhood, with the bulk of the costs in
special services and lost wages related to increased demands on one or both parents. Costs increase with
the occurrence of intellectual disability.
• Mothers of children with ASD, who tend to serve as the child’s case manager and advocate, are less likely to
work outside the home. On average, they work fewer hours per week and earn 56 percent less than mothers
of children with no health limitations and 35 percent less than mothers of children with other disabilities or
disorders.

Autism In Adulthood

• Over the next decade, an estimated 707,000 to 1,116,000 teens (70,700 to 111,600 each year) will enter
adulthood and age out of school based autism services.
• Teens with autism receive healthcare transition services half as often as those with other special healthcare
needs. Young people whose autism is coupled with associated medical problems are even less likely
to receive transition support.
• Many young adults with autism do not receive any healthcare for years after they stop seeing a pediatrician.
• More than half of young adults with autism remain unemployed and unenrolled in higher education in the
two years after high school. This is a lower rate than that of young adults in other disability categories,
including learning disabilities, intellectual disability or speech-language impairment.
• Of the nearly 18,000 people with autism who used state-funded vocational rehabilitation programs in 2014,
only 60 percent left the program with a job. Of these, 80 percent worked part-time at a median weekly rate
of $160, putting them well below the poverty level.
• Nearly half of 25-year-olds with autism have never held a paying job.
• Research demonstrates that job activities that encourage independence reduce autism symptoms and
increase daily living skills.
Economic Costs

• The cost of caring for Americans with autism had reached $268 billion in 2015 and would rise to $461 billion
by 2025 in the absence of more-effective interventions and support across the life span.
• The majority of autism’s costs in the U.S. are for adult services – an estimated $175 to $196 billion a year,
compared to $61 to $66 billion a year for children.
• On average, medical expenditures for children and adolescents with ASD were 4.1 to 6.2 times greater than
for those without autism.
• Passage of the 2014 Achieving a Better Life Experience (ABLE) Act allows tax-preferred savings accounts for
people with disabilities, including autism, to be established by states.
• Passage of autism insurance legislation in all 50 states is providing access to medical treatment and
therapies.

Social (Pragmatic) Communication Disorder

Diagnostic Criteria
A. Persistent difficulties in the social use of verbal and nonverbal communication as manifested by all of
the following:

1. Deficits in using communication for social purposes, such as greeting and sharing information, in a manner
that is appropriate for the social context.
2. Impairment of the ability to change communication to match context or the needs of the listener, such as
speaking differently in a classroom than on the playground, talking differently to a child than to an adult, and
avoiding use of overly formal language.
3. Difficulties following rules for conversation and storytelling, such as taking turns in conversation, rephrasing
when misunderstood, and knowing how to use verbal and nonverbal signals to regulate interaction.
4. Difficulties understanding what is not explicitly stated (e.g., making inferences) and nonliteral or ambiguous
meanings of language (e.g., idioms, humor, metaphors, multiple meanings that depend on the context for
interpretation).
B. The deficits result in functional limitations in effective communication, social participation, social
relationships, academic achievement, or occupational performance, individually or in combination.

C. The onset of the symptoms is in the early developmental period (but deficits may not become fully
manifest until social communication demands exceed limited capacities).

D. The symptoms are not attributable to another medical or neurological condition or to low abilities in
the domains or word structure and grammar, and are not better explained by autism spectrum disorder,
intellectual disability (intellectual developmental disorder), global developmental delay, or another
mental disorder.