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114 Chapter 7 Autism Spectrum Disorder
Box 7.1 Emerging Science
Eyes, Faces, and Social Engagement Processes
Researchers are using a variety of functional magnetic
resonance imaging (fMRI), EEG, and behavioral
methodologies to gain new insights into how individuals
with autism view and interact with their socioemotional and
interpersonal worlds. “Understanding how infants, children
and adults capture details from their environment is important
in trying to unravel how learning and developmental
processes take place” (Amestoy et al., 2015, p. 2). Data
from multiple studies document various atypical patterns
of visual scanning and attentional processing displayed by
individuals with autism (Reisinger et al., 2020). Compared
to individuals without autism, who look frequently and for
relatively longer periods of time at core facial features (eyes
and mouth), individuals with autism are less likely to direct
visual searching at the eyes (refer to the accompanying photo,
Figure 7.2). Not only is this pattern of face scanning unusual,
it is also likely to be incomplete and less meaningful. Given
that the perception of faces is a highly developed visual skill
with abundant social significance, early deficits are likely to
have far-reaching implications (Behrmann et al., 2016). In
addition, individuals with autism display atypical processing
of biological movement and actions (i.e., looking at what is
most informative in the environment). Examples of biological
movements include shifts in gaze directions by other persons.
Lack of preferential attention to these kinds of biological
movements likely underlies deficits in social interaction skills
such as joint attention (Briot et al., 2021; Klin et al., 2015).
Infants who are later diagnosed with autism spectrum disorder
display distinctive developmental trajectories related to eye gaze in
the first year of life (Gliga et al., 2014; Klin et al., 2015). Eye
movements and orientation to others’ faces appear typical in the
first two months, and this is assumed to ref lect a reflexive response.
By two months of age, when typically developing infants display
eye gaze and orientation that is active and socially meaningful, the
infants who are later diagnosed with autism show declines in gaze
and orientation. The degree of decline at six months is associated
with the severity of ASD at three years. This lack of orientation
and motivation leads to “forms of learning that are not grounded
in social interaction with a preponderance of learning about the
physical (rather than social) environment” (Klin et al. 2015,
p. 18). Although atypical eye gaze is not the cause of autism, it
appears to be a biomarker of “more generalized failures in social
adaptation at the level of brain and epigenesis” (Klin et al., 2015,
p. 19).
Both subcortical and cortical brain networks are involved in
social attention, social motivation, and social reward processes.
Also, “social brain” models of autism emphasize the necessary
back-and-forth between brain development and organization
and early experience (Amestoy et al., 2015). Beyond infancy,
across typical development, there are changes in face processing
and social engagement. In adolescence, for example, there is
evidence of distinct patterns of underlying brain development
as well as associations between the degree of difference from
typical brain development and ASD symptom severity
(Thompson et al., 2020; Tune et al., 2019). In addition, there
are new demands and expectations related to peer interactions
and new challenges related to accurate face perception (e.g.,
related to emotion recognition). These challenges also have to
be negotiated, of course, by adolescents with ASD (Behrmann
et al., 2016), and we need to make sure to capitalize on ongoing
brain-behavior research and clinical experience to provide
appropriate support for the best possible outcomes.
Figure 7.2 Typical and atypical visual
scanning
Fixations and visual trajectories for a typical
individual (top photo) and for a child with autism
spectrum disorder (bottom photo).
frontiersin.org
Social and emotional impairments influence multiple
domains of typical development. Autistic children display
deficits in pretend play and imitation (Charman et al.,
2000; Tager-Flusberg, 2014). For instance, “children with
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Editorial review has deemed that any suppressed content does not materially affect the overall learning experience. Cengage Learning reserves the right to remove additional content at any time if subsequent rights restrictions require it.
autism do not want to use their miniature snow shovel to
shovel snow just like daddy or use a screwdriver to repair a
toy when mommy is doing the same” (Harris, 1995, p. 306).
Other children never deviate from a particular play routine.
Autism Spectrum Disorder 115
Filipek et al. (1999, p. 445) provide an example of a “verbal
autistic preschooler who ‘plays’ by repeatedly reciting a
soliloquy of the old witch scene verbatim from Beauty
and the Beast while manipulating dollhouse characters in
precise sequence according to the script. When given the
same miniature figures and dollhouse but instructed to play
something other than Beauty and the Beast, this same child
is incapable of creating any other play scenario.”
Autistic youth also display an overall lack of social
“style” (Hobson & Lee, 1998, 1999). The difficulties are
perhaps most obvious in reciprocal relationships such
as peer friendships, where expectations for social and
emotional skills are higher, and are observed even in the
highest-functioning groups of autistic youth. In some
cases, children do better when interacting with much
older or younger children, where they can adopt the
clearly defined role of follower or leader (Filipek et al.,
1999). This is certainly true for Noah, the four-year-old
described at the beginning of the chapter, who has the
most social difficulties with other children around his age.
He is somewhat more comfortable when interacting with
his 13-year-old sister or his parents, who understand his
routines and rituals and can adjust their behaviors to what
he needs most.
With a dimensional perspective, we expect that autistic
youth vary in their social and emotional functioning. Some
children (e.g., those previously diagnosed with Asperger
syndrome and now likely diagnosed with autism spectrum
disorder, with fewer supports required) appear to be more
aware of others as social beings and more interested in social
interactions. However, although the desire and motivation
are present, these children are still somewhat frustrated by
the seemingly intuitive give-and-take of social exchange
(Tager-Flusberg, 2014). Relying on the formal rules of
social behavior, these children make more overtures to other
children but often appear awkward, rigid, and insensitive in
their interactions. Their general social impairments, as well
as being ignored or ridiculed by their peers, may lead later
to the withdrawal and isolation that is more characteristic of
children with more severe ASD (Filipek et al., 1999).
Regarding individual differences in emotional
development and adaptation, the children previously
diagnosed with Asperger syndrome can and do talk about
emotions and relationships. But the more time one spends
in such conversations with these children, the more it is
apparent that the talk is concrete and intellectualized (Klin,
Volkmar et al., 2000). One of the authors worked with a
young adolescent who was preoccupied with violent “slasher”
movies. In therapy, it became clear that he responded to the
highly exaggerated (and more easily perceived) emotional
states of the characters. Similarly, Luca, the nine-year-old
presented at the beginning of the chapter, is fascinated
by comic books. Luca can talk endlessly about the clearly
outlined conflicts, resolutions, and emotional states of the
characters, although he never even comes close to expressing
these feelings himself.
With respect to communication, autistic children display
both delay and d ifference. There are impai rments in t he forms
of speech, with slowed babbling and delayed use of words,
later onset (or lack of onset) of intentional communication
such as pointing, a lack of imitation, and atypical nonverbal
components of speech such as tone and prosody. The
content of speech is also unusual, with both immediate
and delayed echolalia (inappropriate or uncommunicative
repetition of words or phrases). For example, in addition to
the pronoun reversals of Noah (asking “Would you like the
ball?” when he wants a ball), he frequently repeats the last
word spoken to him in a conversation. Children who display
only language delay and disorder (in acquisition and use of
verbal language) are not diagnosed with ASD; instead, they
may meet the criteria for the DSM-5-TR category of social
communication disorder.
There are even more pronounced difficulties with
the social use of language, or pragmatics (Landa, 2000).
Autistic children use language for instrumental reasons,
such as getting a dessert, rather than for social purposes,
such as sharing one’s pleasure in completing a puzzle. Noah’s
family, for example, came to realize that he never initiates a
conversation unless it is about something he wants or needs.
Consequently, they look for these opportunities to engage
with him and broaden, by very small increments, the scope
of their communication with him.
Some autistic youth (again, mostly those previously
diagnosed with Asperger syndrome) engage in pedantic, onesided conversations. In addition, they do not self-censor their
speech. Klin (2002) provides an example of a college student
with Asperger syndrome who asked a student if he would
be willing to trade his girlfriend for a watch (note here the
very thin line between things and people). Luca (in the case
described earlier), for example, was often preoccupied with
issues of fairness at home, where he often complained bitterly
about his baby sister getting new clothes when he did not.
Although he was able to keep track of her entire wardrobe,
he was not comforted by explanations that he was treated
similarly as an infant or by the fact that babies grow more
rapidly than nine-year-old children.
Restricted, Repetitive Behaviors
and Fixated Interests
Most children with autism spectrum disorder exhibit
restricted, repetitive behaviors (RRBs). Compared to
social and communication characteristics, less theoretical
and research attention has been paid to RRBs. RRB is a
multidimensional construct including repetitive motor
behaviors such as rocking, hand flapping, or self-stimulatory
behavior (stimming); insistence on sameness; and fixated
or circumscribed interests. Self-injurious behaviors and
compulsions are sometimes present (Uljarevic et al., 2022).
These atypical behaviors are sometimes observed in children
with other disorders, but the collective pattern of behaviors
is distinctive for those with ASD.
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116 Chapter 7 Autism Spectrum Disorder
Repetitive motor behaviors are more prominent in
early development, then decrease over time. Insistence
on sameness and circumscribed interests increase across
childhood and level off during adolescence. In a largescale study, repetitive motor behaviors were associated with
more severe difficulties in functioning, lower IQ, and less
well-developed language ability (Uljarevic et al., 2022).
RRBs also appear to be associated with anxiety, both the
direct experience of anxiety and attempts to manage or
minimize the experience of anxiety (Rodgers et al., 2012).
Most children with ASD also insist on sameness in
their environments and routines, protesting vehemently
when this sameness is disturbed. Common examples are
children with ASD who insist on having furniture in
exact places or clothes in a single color. This insistence
on sameness in the environment is a powerful and
meaningful symptom, reflecting the individual’s concern
and struggle with control of their surroundings (Klin,
2002). Some children with less severe ASD may assert
control in the verbal and language domain by dominating
conversations and continuing to discuss topics long after
conversational partners have tired. Insistence on sameness
appeared to reduce environmental unpredictability and
is hypothesized to reflect early self-regulatory behavior
(Uljarevic et al., 2022).
Some children with autism spectrum disorder also display
fixated interests (or circumscribed interests). At times, their
interests in particular objects appear atypical. For instance, a
child may be focused only on the wheel mechanisms of toy cars
rather than their ability to move across the floor. A different
child may be absorbed by the smell of a toy. Many children
with ASD, like many children without ASD, are intrigued
by Legos
®, trains and cars, mechanics, and technology. More
atypical interests are water, watches and clocks, maps and
timetables, and historical facts (Harrop et al., 2018). These
circumscribed interests are more commonly associated with
“folk physics” (an interest in how things work) rather than
“folk psychology” (how people work) (Baron-Cohen &
Wheelwright, 1999). The display of fixated, circumscribed
interests peaks between ages 8 and 10, and is associated with
an increase in language skills (Uljarevic et al., 2022). Some
sex/gender-related differences are observed. Boys with ASD
appear more interested in transportation, numbers, and
technology, while girls with ASD are more focused on people,
animals, and dolls (Harrop et al., 2018; Lai & Szatmari,
2019). In some children with ASD, specialized interests or
skills lead to the display of unusual giftedness, or autistic
expertise (Mottron, 2017).
Many children with ASD display sensory sensitivities,
sensory aversions, or unusual curiosity about sensory
aspects of the environment. Children may exhibit either
underreactivity, overreactivity, or odd behaviors, and
these difficulties are likely to influence the activities in
which children participate and the number of others with
whom they interact (Lord & Bishop, 2015; Tomchek
et al., 2018).
Tatyana Tomsickova Photography/Getty Images
Children with autism spectrum disorder display fixated
interests and/or strong attachments to certain
objects.
Jessica Park, St. Paul’s and St. Andrew’s Methodist Church and the Migraine Type
Lighting and the Elves, 10/17/98, Courtesy of PureVision Arts.
Some autistic individuals display very well-developed
skills or talents—autistic expertise—such as this artwork by
Jessy Park.
Variability in Clinical Presentations
For almost as long as autism has been recognized, attention
has been paid to the variability in the clinical presentations
of children, adolescents, and adults. Individuals with
autism vary widely in cognitive abilities, language abilities,
co-occurring conditions, and severity of disorder. Clinicians
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Editorial review has deemed that any suppressed content does not materially affect the overall learning experience. Cengage Learning reserves the right to remove additional content at any time if subsequent rights restrictions require it.
Autism Spectrum Disorder 117
and researchers acknowledge the heterogeneity of autism
spectrum disorder but differ as to whether it is more
accurate or more useful to identify categories (or prototypes
or subtypes) of autism or to identify important dimensional
traits. The best-known example of the category approach
is the now-discontinued distinction between autism and
Asperger syndrome, but there have been other attempts to
group individuals into subcategories of autism in order to
better specify developmental pathways, tailor treatments,
and enhance outcomes. These attempts have been mostly
unsuccessful (Rosen et al., 2021).
One example of a newer approach to subtyping identified
three distinct groups in children diagnosed with ASD
(Zheng et al., 2020). The first type included preschoolers
with relatively high cognitive, language, and adaptive
abilities + relatively low levels of social symptoms, RBBs,
and sensory issues. The second type included preschoolers
with high cognitive, language, and adaptive abilities + higher
levels of social symptoms, RBBs, and sensory issues. The third
type included preschoolers with lower cognitive, language,
and adaptive abilities + higher levels of social symptoms,
RBBs, and sensory issues. With additional investigation,
these developmental and behavioral profiles may contribute
to improved diagnosis and intervention (Zheng et al., 2020).
Dimensional approaches are the focus of most current
research. The dimensional perspective leads researchers to
examine the range of social, communication, and behavior
patterns displayed by individuals with autism and explore
those patterns in the families of individuals with autism.
Compared to individuals with autism, many family
members display less noticeable or less extreme social,
communication, and behavior patterns. Relatives may
exhibit delayed language development, difficulties with
social language, atypical social cognition, poor social skills,
difficulties with emotions, and fewer friendships. These
subclinical patterns do not lead to a diagnosis but reflect
the broad (or broader) autism phenotype (Rosen et al.,
2021; Sucksmith et al., 2011). In many ways, however, the
categories-versus-dimensions discussions fail to appreciate
the meaningful overlap between categories and dimensions
observed in ASD (Rosen et al., 2021).
Associated Difficulties and Comorbid
Conditions
Autism spectrum disorder is often diagnosed with other
medical and psychiatric conditions, and many autistic youth
experience additional challenges and difficulties beyond the
autism itself. One of the most frequent comorbid conditions
is intellectual developmental disorder, with approximately
one-third of autistic individuals meeting the IDD diagnostic
criteria (Zeidan et al., 2022). The high rate of comorbidity
between autism and intellectual disability is the focus of
ongoing research (Lord et al., 2018; Russell et al., 2019).
Other disorders that are frequently diagnosed in
combination with ASD include ADHD (28%), anxiety
(20%), sleep-wake disorders (13%), disruptive/impulse
control/conduct disorders (12%), depressive disorders (11%),
bipolar disorders (5%), and schizophrenia spectrum disorders
(4%). These prevalence rates are higher than those observed
in the general population (Lai et al., 2019; Reynolds et al.,
2019). Feeding disorders, correlated with sensory difficulties,
are also common and persist over time (Page et al., 2022).
Self-injurious behavior and suicidal ideation are, of course, a
critical concern (Hunsche et al., 2020). Many autistic adults
report a history of trauma and describe a wider range of
events as traumatic (Rumball et al., 2020).
Autistic youth may also display difficulties that do not
result in additional diagnoses. Irritability and aggression,
for example, are more common in ASD than in other
developmental disorders (Lord et al., 2018). Many parents,
teachers, and mental health professionals describe extreme
noncompliance and mood variability in some autistic
youth (O’Nions et al., 2018). Wandering and/or elopement
(leaving a supervised space) is another problematic behavior.
Autistic children and youth wander away more frequently
than typically-developing children or children with other
disorders, increasing parental worry, negatively impacting
everyday life, and emphasizing the need to safeguard these
children (Andersen et al., 2020; Wiggins et al., 2020).
Between one-third and two-thirds of autistic youth may
also display alexithymia. Alexithymia involves difficulties
in recognizing and distinguishing emotions, difficulties
expressing emotions, and a focus on external rather than
internal experience. Both overlapping and distinct processes
contribute to emotion difficulties in ASD and alexithymia
(Kinnard et al., 2019).
Family members of autistic individuals with the broad
autism phenotype also have higher rates of anxiety, social
phobias, depression, and obsessive-compulsive disorder.
Epilepsy, lower intelligence, and sensory difficulties are
not observed as part of the broad autism phenotype (Rosen
et al., 2021; Sucksmith et al., 2011; Wiggins et al., 2022).
Prevalence and Sex/Gender
Information
Estimates of the prevalence of autism spectrum disorder have
ranged widely in the past, with rates increasing over several
decades then leveling off in the early 2000s. Explanations for
increased rates of ASD diagnosis focus on greater awareness,
better identification, and more available community
supports. Global estimates, based on 71 studies conducted
since 2012, suggest a rate of 1%; estimates vary somewhat
by region and SES (Zeidan et al., 2022). In the United
States, most prevalence estimates are within the range of 1%
(Fombonne et al., 2021; Shaw et al., 2021). State-by-state
comparisons reveal significant differences in the diagnosis of
ASD. These state trends were apparent in 2000 and grew over
the next decade. This variability impacts states’ abilities to
provide resources and support for individuals with ASD and
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Editorial review has deemed that any suppressed content does not materially affect the overall learning experience. Cengage Learning reserves the right to remove additional content at any time if subsequent rights restrictions require it.
118 Chapter 7 Autism Spectrum Disorder
30
ASD Prevalence per 1,000 children
South Carolina*
were also reviewed
their families (Sheldrick & Carter, 2018; refer to Figure7.3).
Although multiple large-scale studies report a prevalence of
approximately 1%, the CDC, Autism Speaks, and many
school districts in the United States report higher prevalence
rates (Maenner et al., 2021).
Increased prevalence of ASD is observed across racial and
ethnic groups. White, Black, and Hispanic children all are
more likely to be diagnosed over time. Black children are more
likely to be diagnosed with both ASD and IDD (Durkin et al.,
2017; Shaw et al., 2021). The greatest disparities in diagnosis are
related to SES background. In contrast to higher rates of ASD in
high-SES families in the United States, ASD is more prevalent
in low-SES families in Europe. This is possibly related to greater
access to services and more parental education in the US, and
more equal access to services in European countries (Rosen
et al., 2021).
The current estimate of male to female ratio in ASD
diagnoses is about 4 to 1 (Fombonne et al., 2021; Zeidan
et al., 2022). That is a somewhat higher ratio than was
observed in a large-scale meta-analysis, with a ratio of 3 to 1
(Loomes et al., 2017). ASD appears to be underdiagnosed
in females. Sex and gender differences may be related
to the sensitivity of diagnostic measures, sociocultural
factors that influence social and communication patterns
in children, and more protective factors or coping
strategies in girls (Happé & Frith, 2020; Rosen et al.,
2021).
Figure 7.3 State estimages of the prevalence
of ASD, 2000–2012
25
20
15
10
5
West Virginia*
0
1998 2000 2002 2004 2006 2008 2010 2012
State-level and crossstate estimates of the prevalence of autism spectrum disorders
(ASD) published by the Autism and Developmental Disabilities Monitoring (ADDM)
network. Medical records reviewed for all states. *Indicates that educational records
Source: Sheldrick & Carter (2018). State-level trends in the prevalence
of autism spectrum disorder (ASD) from 2000-2012: A reanalysis of
findings from the Autism and Developmental Disabilities Network. Used
with permission of Springer Nature ©2018 permission conveyed through
Copyright Clearance Center, Inc.
Year
State-level estimate with
95% confidence interval
Florida
Mean estimate across states
with 95% confidence interval
Alabama
New Jersey*
Maryland*
Utah*
North Carolina*
Georgia
Arizona*
Arkansas*
Missouri
Colorado
Wisconsin
2014
Overal l, with respect to clin ical presentations, there is more
sex/gender similarity than sex/gender differences (Kaat et al.,
2021; Rosen et al., 2021). Sex/gender differences include
girls displaying better social attention, better language,
higher motivation for friendships, and more gender-typical
restricted interests. Some girls with ASD were “more likely
to stay in close proximity to peers and to weave in and out
of activities,” so were less likely to be viewed as a child with
social difficulties (Lai & Szatmari, 2019, pp. 120-121).
Research related to gender diversity in autistic youth suggests
that transgender and gender-diverse individuals are more
likely to be autistic than cisgender individuals. In addition,
some autistic youth experience anxiety and unhappiness
related to female-gender stereotypes (Brunissen et al., 2021;
Cooper et al., 2018; Warrier et al., 2020).
Developmental Course
Before discussing the developmental course of autistic
individuals, it is essential to highlight the frequency with
which earlier and current investigations did not include
first-person accounts. Autistic individuals’ perspectives on
their own experiences are necessary and valuable additions
to any discussion on pathways and outcomes (Pellicano &
den Houting, 2021; Tesfaye et al., 2019). The shift in
conceptualization (discussed earlier in this chapter)
from a focus on atypical patterns and interventions to an
appreciation of “the strengths, differences, and challenges
associated with autism as central to identity” also informs
our understanding of the developmental course (Cost
et al., 2021, p. 4560). As we examine various pathways and
outcomes, keep in mind as well the very real differences
displayed by autistic youth across the spectrum, from
individuals with less severe difficulties to individuals with
more profound dysfunction.
Another shift that influences our understanding of
developmental pathways is from a view of ASD as a disorder
with severe impairments and poor outcomes determined
by gene-brain pathology to a view of ASD as a complex set
of genetic risks where early identification and intervention
allows for better outcomes. This shift includes a reframing of
the goals of intervention from curing a disorder to ensuring
“that inborn risks or vulnerabilities do not translate into
disabilities, specifically, severe intellectual, language, and
behavioral disabilities (Klin et al., 2020, p. 1178).
Finally, we want to emphasize that positive or good
outcomes vary with individuals, parents, and clinicians.
Parent priorities, for example, often focus on their children
being free of mental health difficulties, living independently,
and feeling contentment. These priorities may change over
time as children age and encounter new opportunities and
challenges (Forbes et al., 2021). Autistic individuals may
describe goals and priorities that reflect their own functioning,
personalities, and talents (Lounds Taylor, 2017).
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Developmental Course 119
Infancy and Childhood
For almost all individuals, autism spectrum disorder is a
lifelong condition. Many cases of autism are identified in the
first years of life, although some youth are diagnosed in later
childhood, and some individuals are diagnosed for the first
time in adulthood. Although signs are often subtle, researchers
and clinicians have reliably identified early precursors—
including deficits in eye contact, reduced social interest and
impairments in social interaction, and atypical sensorimotor
development—that reliably predict the emergence of ASD.
Disruptions in these foundational social skills lead to the
core, characteristic symptoms of autism that are mostly in
place by the end of the second year. By three years of age, the
diagnosis of autism spectrum disorder is reliable and stable
(Klin et al., 2020; Szatmari et al., 2016). The median age for
ASD diagnosis is between 4 and 5 years of age and somewhat
later for children from low-SES families (Klin et al., 2020).
The earlier the diagnosis, the better the outcome. The
first few years of life provide “a window of tremendous
neuroplasticity” and an opportunity for meaningful
intervention. The delay in diagnosis for children from
low-income families, rural families, and families of color,
coupled with ongoing healthcare disparities and adverse
childhood experiences, may be associated with worse ASD
outcomes (Klin et al., 2020, p. 1176).
According to numerous studies, which often rely on
parental reports, some children diagnosed with autism
spectrum disorder display regression. That is, some
parents report that their children exhibit either an abrupt
loss of skills (both language and social communication
skills) or a more gradual deterioration over months.
Research suggests that “regression may take the form of a
subtle plateauing, loss of engagement, or failure to acquire
more sophisticated social-communication skills ... rather
than an identifiable loss of actual skills” (Lord & Bishop,
2015, p. 60). Both early-diagnosed and later-diagnosed
children display similar social, exploratory, and behavior
difficulties. The severity (or lack of severity) of language
impairments and overlap among other developmental
disorders complicates early identification. For some
autistic children, then, it seems more accurate to describe
a late diagnosis rather than a late-onset disorder (Bacon et
al., 2018).
A number of developmental trajectories have been
identified, with substantial heterogeneity observed in
communication, social, and behavioral domains (Fountain
et al., 2012; Kim et al., 2016; Klin et al., 2020) (refer to
Figure 7.4). Note that, as shown in Figure 7.4, improvement
is more likely in the social and communication domains,
with much of the improvement occurring early. Also note
that there were groups of children, labeled “bloomers,” who
displayed considerable, rapid improvement. Children who
were higher functioning at the time of diagnosis were those
who were most likely to show significant improvement.
Children who were also diagnosed with intellectual
disability were less likely to improve.
Another study of trajectories identified turning points
associated with change. The transition to school (at age 6)
marked one turning point. One-quarter of the children in
the study showed continuous improvement (until age 10)
after school entry. Three-quarters of the children displayed
initial improvements which plateaued over time (Georgiades
et al., 2022).
Up to 30%–40% of autistic individuals are nonverbal
or use very simple phrases. This is significant because the
acquisition of language skills and better language abilities
are associated with more positive outcomes (Lord et al.,
2018; Tager-Flusberg, 2014). Higher intelligence and better
executive function skills are also associated with more positive
outcomes (Ameis et al., 2022; Tomaszewski et al., 2020).
With various patterns of social and communication
difficulties, relationships are often challenging, but key aspects of
important relationships may be in place. Studies of attachment
show that many autistic children exhibit secure attachments.
“The children’s relationships with their caregivers are clearly
special, even though their qualities of relatedness are atypical”
(Hobson et al., 2006, p. 23). With secure attachments, the
relationship pathways of autistic children look similar to nonautistic children (Rozga et al., 2018). Other studies find that
insecure-resistant attachments are more frequently observed in
autistic children (Martin et al., 2018).
School settings and educational experiences offer autistic
children opportunities for growth as well as many obstacles.
Many autistic children demonstrate basic, age-appropriate
academic skills, but it is important to pay attention to
the possibility of learning disabilities (Kim et al., 2018).
ADHD may also complicate learning for some autistic
children. Although many autistic youth display academic
achievements, autistic children are more likely to be isolated
across all grade levels, and this difference is increasingly
dramatic in later grades (Rotheram-Fuller et al., 2010).
Autistic youth are also more likely to be bullied in school.
The school environment itself may be problematic.
Mainstream classrooms, for example, are often “physically
large, noisy, and chaotic, require frequent transitions within
and between classes throughout the school day, and entail
a host of implicit social rules and expectations” (Pellicano
& den Houting, 2021, p. 7). Moving from one school to
another, either because of grade changes or because of better
school services, may lead to increases in social difficulties and
anxiety for autistic children. Teachers of autistic children
may also experience distress related to lack of preparation,
resources, and support (Nuske et al., 2019).
Adolescent and Adult Outcomes
As noted above, many autistic youth display improvements
in the core symptoms of ASD as they age, but adolescence
presents new challenges. Many autistic youth continue
to experience social difficulties and social anxiety. Girls
who had somewhat better adaptations in childhood may
encounter more social difficulties (Lai & Szatmari, 2019).
Emotion factors, atypical sensory processing, and continued
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120 Chapter 7 Autism Spectrum Disorder
essed (28.0%)
High (12.7%)
B
C Repetitive behavior trajectories
100
Figure 7.4 Multiple developmental pathways for ASD
90
High
80
70
60
50
40
Functioning
30
20
Low
10
0
345678910 11 12 13 14
A Communication trajectories
100
90
High
80
70
60
50
40
Functioning
30
20
Low
10
0
345678910 11 12 13 14
Social trajectories
Age
Age
Bloomers (7.5%)
Medium–high (25.8%)
Medium (24.5%)
Low–medium (18.4%)
Low (11.1%)
High (7.0%)
Bloomers (10.7%)
Medium–high (19.6%)
Medium (29.7%)
Low–medium (24.5%)
Low (8.4%)
5
High
Never (21.4%)
Improving (8.1%)
Declining (7.1%)
4
When Str
Daily (27.6%)
3
Usually (7.8%)
Functioning
2
Low
1
345678910 11 12 13 14
Source: Fountain, Winter, & Bearman (2012). Six developmental trajectories characterize children with autism.
Age
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Developmental Course 121
insistence on sameness may also contribute to anxiety
trajectories (Baribeau et al., 2021; Pickard et al., 2020). It is
important to note, however, that prediction of adult outcomes
from childhood assessments is challenging. Although adult
verbal and non-verbal IQ and daily living skills are well
predicted by childhood measures, important outcomes
related to symptom severity and mental health concerns are
more variable and less well predicted (Forbes et al., 2021).
The transition to adulthood requires planning for
employment, educational opportun ities, a nd social engagement
(Wei et al., 2015). Increasing numbers of autistic youth attend
college. Many report feeling academically prepared but less well
socially prepared. Resources and supports need to be in place
for them to do well (Flegenheimer & Scherf, 2022). Individuals
from higher socioeconomic backgrounds are more likely to
enroll in postsecondary education. Part-time employment is
much more common than full-time employment, and again,
resources and supports are often required for success.
Many autistic youth and adults develop coping and
compensatory strategies and skills that help them manage
symptoms, everyday events, and more stressful situations
(Livingston & Happé, 2017). These strategies and skills
may be the result of their own efforts, problem-solving
with parents and teachers, intervention, or environmental
modifications. Sometimes, certain strategies and skills may
be usefully understood as “camouflaging.” Camouflaging
refers to strategies used by autistic people to hide or mask
symptoms or difficulties during social interactions (Cook
et al., 2021). Camouflaging may include mimicking
others’ gestures and controlling how much one speaks to
more effortful behaviors such as ongoing analyses of social
information and potentia l responses. Althoug h camouf laging
may lead to improved social interactions in the short term, it
may come with high costs in terms of behaviors that require
significant cognitive and emotional effort, often in response
to negative self-appraisals and stigma (Livingston et al.,
2019; Pellicano & den Houting, 2021). Autistic females
report more camouflaging than either autistic males or nonbinary autistic individuals (Hull et al., 2020).
Trajectories involving mental health and mental illness
suggest that many autistic individuals experience increasing
and compounding difficulties over time. Autistic youth
with more severe disorders had more problematic pathways
(Colvert et al., 2022). Anxiety and depression, for example,
appear to increase from adolescence to middle adulthood,
then decline slightly (Uljarevic et al., 2020).
An updated meta-analysis of adult outcomes estimated
that approximately 20% of autistic adults had good
outcomes, approximately 30% had fair outcomes, and
approximately 50% had poor outcomes. Below-average
intelligence was associated with poor outcomes (Mason
et al., 2021). Cognitive ability was also associated with more
differentiated outcomes. Adults with higher verbal IQs
displayed greater autonomy (the ability to make decisions
and control one’s activities), better social relationships
(inclusion, meaningful social experiences, and friendships),
and more purpose and meaning (participation in daily
activities, employment, and recreation and leisure activities)
(McCauley et al., 2020; refer to Figure 7.5).
Keep in mind that adult outcomes are measured
differently across studies and that most studies define good
outcomes in terms of typically-developing individuals.
Many autistic adults continue to live with their parents or in
group homes and experience ongoing social and vocational
struggles. Social and employment outcomes may or may not
be as relevant or achievable for autistic adults (Howlin &
Magiati, 2017; Lord et al., 2018). Addressing gaps in
employment services and providing opportunities for
enhanced well-being across the lifespan is a pressing concern
(Howlin, 2021; Nicholas et al., 2017).
Family Roles and Culture
Parenting children and adolescents with autism spectrum
disorder is clearly a challenging task. Parents of youth with
ASD report higher levels of stress compared to parents of
typically developing children and also compared to parents
of children with other developmental disabilities or disorders
(Hayes & Watson, 2013). In one study, Latina mothers
reported fewer family problems and less pessimism compared
to non-Latina White mothers (Lopez & Magaña, 2020).
In another study, Latina mothers reported greater culturebased stigma and difficulty accepting their child’s diagnosis
(Gordillo et al., 2020). Black parents also report a lack of
access to healthcare services and specific concerns about their
children’s diagnosis and ASD pathways (Burkett et al., 2015;
Donohue et al., 2019). Additional research is needed that
explores the many ways in which culture (race/ethnicity, SES,
country-of-origin) contributes to a variety of ASD outcomes.
There are different stressors associated with various
times in the child’s life (e.g., at diagnosis, entrance to
school, or transition to adulthood) and with various tasks
(e.g., identifying available services, accessing such services);
support and resources for parents must be provided at
multiple times (Rivard et al., 2014). One example of agerelated parenting challenges is providing opportunities for
peer relationships. Parents of preschoolers with and without
ASD are often responsible for setting up play dates and
the supervision of peer interactions. The peer socialization
challenges of young children with ASD may make it
more difficult for their parents to create and maintain
these opportunities. Education and support for parents of
children with ASD is needed to facilitate good outcomes
(Estes et al., 2018).
Parents’ descriptions of their parenting goals for their
children with ASD overlap with the goals of parents of
children without ASD. Norm adherence goals include child
cooperation, respect for authority, and appropriate public
behavior. Autonomy, support, and relationship goals include
child resi lience and well-being and po sitive relationship quality.
These goa ls in fluence parenti ng behav iors (O’Nions et al., 2021).
In addition, parents of children with ASD identify several “best
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122 Chapter 7 Autism Spectrum Disorder
A More Cognitively Able Adults: Number of Positive Outcomes Met
B
2 out of 3 Positive Outcomes Met
1 out of 3 Positive Outcomes Met
0 out of 3 Positive Outcomes Met
Figure 7.5 Cognitive ability is associated with positive outcomes
3 Positive Outcomes Met
2 out of 3 Positive Outcomes Met
1 out of 3 Positive Outcomes Met
0 out of 3 Positive Outcomes Met
Current Friends
1 or more true friends
Peers, limited interaction
Acquaintances only
No current friends
Current Work
Less Cognitively Able Adults: Number of Positive Outcomes Met
Current Friends
Friends, peers,
or acquaintances
No current friends
or acquaintances
Current Living
Independent
Group home
Home with parents
Independent Work/Still in education
Supported Work
Volunary Work/Special center
No occupation outside the home
3 Positive Outcomes Met
Current Daily Living Skills Age Equivalence
At or above 8 year old level
Below 8 year old level
Current Activities
Supported, nonsupported, or voluntary employment
Special center
Limited activity outside the home
Source: McCauley, Pickles, Huerta, & Lord (2020). Defining positive outcomes in more and less cognitively able autistic adults.
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Etiology 123
things” about their 3- to 11-year-old children, including
their children’s love, happiness, kindness, and humor (Cost
et al., 2021).
Like siblings in families with typically-developing
children, siblings of youth with ASD display a range of
emotions and responses. In the book The Siege: A Family’s
Journey into the World of the Autistic Child, Clara Clairborne
Park (1967/1995, p. 105), the mother of a child with autism
describes the adjustment required of the child’s siblings:
“It was hard for a little boy six and little girls nine and ten
to put all their minds to choosing a Christmas present for
their two-year-old sister’s first real Christmas and know that
in all probability she wouldn’t look at it or them.” As time
went on, however, the siblings of Park’s daughter accepted
their sister for who she was and became an integral part of
her increasing engagement with the world: “The best thing
they could do for Elly, as she entered the world by slow
degrees, was to be children with her, to play naturally and
with enjoyment the games that came to me, at forty, with
such difficulty and awkwardness. They carried her about,
dressed her in clothes from the dress-up chest, rode her in
the wagon, chased her on the grass.” Given the difficulties
that children and adolescents with ASD experience,
sibling relationships across the lifespan, including into and
throughout adulthood, are especially important to consider.
The degree of involvement and support offered by siblings
may have an especially meaningful impact on the well-being
of individuals with ASD (Diener et al., 2015; Moss et al.,
2019; Petalas et al., 2012).
Resilience Pathways
Resilience pat hways are diverse, and good outcomes involve
varied experiences for autistic individuals. Identifying
protective factors, maximizing potential, and minimizing
barriers all contribute to positive developmental pathways
(Elsabbagh, 2020; Lai et al., 2020). As described
previously, many descriptions of good outcomes focus on
autonomy, social relationships, and meaning and purpose
(Lai et al., 2020; McCauley et al., 2020).
With social interactions, for example, it makes sense
to pay close attention to research findings suggesting
that autistic youth and autistic adults report better social
communication with other autistic individuals (Crompton
et al., 2020: Morrison et al., 2020). Making sure that
autistic children and adolescents experience many positive
social interactions across the range of neurotypical and
neurodiverse individuals increases the likelihood and impact
of resilience processes.
To facilitate good outcomes, barriers to flourishing
also need to be identified and addressed. “The physical
and social environments within which we all live are
generally designed to meet the needs of those who fall
within the typical range of neurodevelopment; these same
environments are often suboptimal, and even hostile, for
neurodivergent people and need to be adjusted if such
people are to lead good lives” (Pellicano & den Houting,
2021, p. 7). Societal accommodations and autism-friendly
environments promote inclusion and respect and highlight
the inherent dignity and worth of autistic individuals
across the spectrum (Lai et al., 2020; Vivanti & Messinger,
2021).
The resilience of parents and families of autistic
individuals is a related phenomenon. Acknowledgement of
the unique challenges of parents and families and providing
education and intervention improves the outcomes of
caregivers, families, and autistic individuals. Interventions
designed to increase stress management and reduce stress
have had positive results (Schwartzman et al., 2022).
Etiology
Early Hypotheses
In their early work, Kanner and Asperger focused on the
physiological origins of autism, but these hypotheses were
quickly displaced by psychosocial explanations more in tune
with the psychoanalytic era. Most frequently associated
with Bruno Bettelheim, these explanations focused on poor
parenting and cool, distant, “refrigerator mothers,” whose
infants intuitively understood that they were being rejected
and so withdrew from all contact and relationships. The
consequences of being blamed for a pervasively debilitating
disorder in one’s own child were devastating. In time—
although much too late for many parents—these theories
were completely discredited.
Contemporary research on autism spectrum disorder
acknowledges both genetic and phenotypic heterogeneity:
“Any successful account of the ‘final common pathway’
for autism will have to account for why multiple different
genetic, molecular, and neural factors can cause the same
syndrome” (Johnson et al., 2015, p. 432). This is an example
of equifinality (discussed in Chapter 3). Examples of
alternative routes, cumulative effect models, and cascading
effect models are depicted in Figure 7.6. Cumulative models
suggest that the number of atypical neurocognitive processes
is related to the severity of the disorder, while cascading
effect models assume that a few critical atypical processes
set in motion a series of difficulties that are amplified over
development (Gliga et al., 2014).
Prospective longitudinal studies provide much-needed
data on early autistic processes. These studies—often
referred to as baby siblings research—focus on infants at a
higher likelihood of developing autism because they have a
sibling with the disorder (Chawarska et al., 2020; McDonald
et al., 2020; Szatmari et al., 2016). Developmental cascade
and dimensional models of autism describe multiple risk
indices (including genes, prenatal factors, and early postnatal
factors) that influence multiple risk processes (atypical
brain development, brain-behavior links, atypical social
interactions) that, in turn, lead to ASD outcomes. These
longitudinal studies require us to think carefully about
high-risk siblings with more typical outcomes. That is, “are
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