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PEDIATRICS Volume 141, number s4, April 2018:e20164300
SUPPLEMENT ARTICLE
Social Support, Well-being, and
Quality of Life Among Individuals
on the Autism Spectrum
Steven K. Kapp, PhD
Human Development & Psychology, University of California, Los Angeles, Los Angeles, California; and Sociology and Egenis, University of Exeter, Exeter, United Kingdom
DOI: https:// doi. org/ 10. 1542/ peds. 2016- 4300N
Accepted for publication Sep 26, 2017
Address correspondence to Steven K. Kapp, PhD, University of Exeter, Egenis, Byrne House, St German’s Road, Exeter EX4 4PJ, United Kingdom. E-mail: s.k.kapp@
exeter.ac.uk
PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).
Copyright © 2018 by the American Academy of Pediatrics
FINANCIAL DISCLOSURE: The author has indicated he has no financial relationships relevant to this article to disclose.
FUNDING: Funded in part by the Health Resources and Services Administration of the US Department of Health and Human Services under grant UA3MC11055,
Autism Intervention Research Network on Behavioral Health. The information or content and conclusions are those of the author and should not be construed as the
official position or policy of, nor should any endorsements be inferred by the Health Resources and Services Administration, US Department of Health and Human
Services, or the US Government. Dr Kapp is also supported by the Wellcome Trust, grant 108676/Z/15/Z.
POTENTIAL CONFLICT OF INTEREST: The author has indicated he has no potential conflicts of interest to disclose.
Diverse theoretical perspectives1
–
3 and empirical findings4, 5 reveal development as a complex
interaction between nature and nurture, yet the diagnosis of autism spectrum disorder is used to
classify neurodevelopmental disability mainly on the basis of individual-level social dysfunction.
Self-advocates have organized the neurodiversity movement to reclaim autism as a part of identity
(eg, using identity-first language such as “autistic person, ” as in the case of the author, rather
than person-first language such as “person with autism”
6,
7) and support civil rights. We argue
that social environments contribute substantially to disability and seek quality of life, defined in
terms of “objective” factors of adaptive functioning, such as independent living and employment,
as well as in terms of subjective well-being, which requires self-determination to play as active
a role as possible in making decisions to have the experiences one wants. Yet we argue against
normalization and “cure, ” in part because many autistic traits can function in neutral or positive
ways, although other people may misunderstand or stigmatize atypical behaviors.8
–10 Indeed, the
following narrative review developed from empirical evidence replicated by independent research
teams argues against a linear relationship between autism symptoms and impaired functioning,
across developmental periods and in multiple domains of both “objective” quality of life and
in subjective well-being. In the following syntheses, I suggest that effective social support and
subjective well-being mediate whether autistic people achieve a high quality of life.
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ADAPTIVE FUNCTIONING
Parental Support
Language Acquisition
Actively responsive rather than
directive or less involved parenting
helps to promote positive social
engagement, especially in infants
susceptible to autism.11
–
13 Responsive
parenting (eg, parenting that follows
children’s focus of attention and labels
objects of interest while allowing the
child to take the lead) contributes to
young autistic children’s language
development,
14
–
17 particularly
among those who need it most: those
with lower levels of expression.18
–
21
Although the same principle applies
in typical development,
22 responsive
caregiving and input may especially
benefit language learning for autistic
children,
23,
24 particularly for those
who have more difficulty responding
to others’ attention.25 Parents’
strategies to synchronize their
behavior in response to their autistic
child’s, such as matching his or her
pace, may drive language gains from
joint parent-child engagement26,
27 through encouraging the child to
initiate interactions,
28 which may
especially benefit the children who
have the most difficulty producing
their own goal-directed actions in
reaction to others’ movements.29,
30 This aligns well with the advice
of autism rights movement founder
Sinclair,
31 in a foundational essay
primarily for parents, to “let your
child teach you a little of her language,
guide you a little way into his world”
as a means of helping the child adapt
to the dominant culture and for the
well-being of the family. Fortunately,
“learning to speak their child’s
language” as a parenting strategy
has had near-universal support,
regardless of people’s relationship
to autism or support for the
neurodiversity movement’s beliefs.7
Autism Acceptance
There is evidence to support the
benefits of parents’ acceptance of
their children’s autism across the
spectrum. Parents’ acceptance of
their child’s autism32
–
35 and positive
emotions toward their child36 do not
relate to child characteristics such
as developmental level or autism
severity as assessed by experimental
measures. Instead, higher autism
severity, as assessed by the parents’
questionnaire-based report,
sometimes inversely relates to their
acceptance of their child’s autism,
37 which suggests that subjective
perception rather than empirically
demonstrated factors may drive
acceptance. An increase in autism
symptoms over time also relates to
more parental acceptance of a child’s
autism,
38 likely because of a lowered
perception of the possibility for the
child to outgrow his or her challenges.
Parent-child reciprocity32,
35
and relationships39 have often
revealed independence from autism
severity, whereas the parents’
acceptance of autism strengthens the
child’s functioning in these areas.32,
34,
35
Mothers’ understanding of their
autistic child also may not relate to
child characteristics,
34 but acceptance
of their child's autism drives better
recognition of and responsiveness to
their child's communication, which in
turn improves the relationship,
40
likely in part through improving
maternal well-being.37 These findings
challenge diagnostic criteria that
largely implicate difficulties with
reciprocity and relationships as
problems of the labeled individual,
at least in the parent-child context,
and demonstrate the need for
further efforts to increase parents’
acceptance of their child’s autism.
School Inclusion
Academic Inclusion
Similarly, data reveal the benefits
of classroom inclusion for autistic
children with diverse intellectual and
academic needs. Early intervention
delivered in inclusive as opposed
to segregated preschool settings
predicts higher IQ in elementary
school, particularly for those with
initially greater social and adaptive
behavior impairments.41 In addition,
higher levels of educational inclusion
relate to better functioning for
autistic adolescents and adults,
beyond the effects of demographic
and individual characteristics.42
Furthermore, autistic adolescents
with intellectual disability had better
academic performance in inclusive
versus segregated classrooms,
43
likely in significant part because they
received more structured instruction
time44 and their educational plan
had greater focus on applied skill
development (as contrasted with rote
procedural goals45). These benefits
of inclusion appear driven in part by
higher expectations based in confident
understanding of needs,
46 more
naturalistic and responsive teaching
methods as opposed to behavioral
management,
47
–50 and access to
typically developing peers.51
Social Inclusion
Beyond classroom inclusion, peers’
ineffective attitudes rather than
severe autism symptoms pose
a substantial barrier to social
integration in and outside school.
In educationally inclusive school
environments, peers may more
often reject autistic children who
make more prosocial approaches
but may not reject those who act
shy.52 Similarly, among autistic
youth, those with attention-deficit/
hyperactivity disorder more
often have an “active but odd”
interaction style53 and suffer from
peer victimization.54 Highly verbal
autistic adolescents or young adults
with greater teacher-reported social
competence55 and lower self- and
parent-reported autism symptoms
experience more victimization56 and
stigma,
57 in addition to having more
anxiety, depression, and suicidal
ideation.56 Altogether, studies
reveal that students or individuals
with less severe autism may more
frequently suffer from bullying,
perhaps because peers interpret their
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behavior as indicating oddness rather
than disability and thus as more
intentional or irresponsible.58
–60
(Transition to) Adulthood
Appropriate support rather than
severity of disability plays a
critical role in how the transition
to adulthood impacts functioning.
Autistic young adults with greater
conversational skills more often
lose services after high school in the
United States,
61 whereas those with
intellectual disabilities tend to have
more organized daytime activities.62
This may explain why high school
exits among autistic people without
intellectual disabilities tend to slow
their reduction in autism symptoms63
and add more stress in relationships
with their mothers.64 An autism-
typical pattern of poor adaptive
functioning relative to IQ tends to
rise with greater age and IQ,
65
–
72
and autistic young adults as a group
tend to have lower employment rates
than their peers with intellectual
disabilities.73 Yet the organizational
and social experience of employment
can improve self-regulation and
interpersonal functioning because
vocational engagement and
independence predict improvements
in activities of daily living and
reductions in autism symptoms and
maladaptive behavior, rather than
vice versa, among autistic adults.74
Similarly, longitudinal research
has revealed that autistic adults
experience declines in vocational
independence over time, whereas
the receipt of services improves
independence in vocational activities,
which are associated with more
independence in other activities of
daily living.75 Adulthood appears
to mark the developmental period
that most challenges the validity of
functioning labels, because some
individuals with higher needs may
function better than others with less
severe autism symptoms and higher
cognitive abilities, as a result of their
support.
SUBJECTIVE WELL-BEING
A severe behavioral manifestation
of autism or a high need for support
not only does not preclude a high
quality of life from a subjective
perspective but also usually relates
to higher well-being within the
autism spectrum. Children and adults
with subtler autism symptoms,
76
–
78
more emotional awareness,
79 closer
friendships,
77 and higher cognitive
abilities77,
78,
80,
81 tend to regard their
autism as more severe and endorse
more anxiety and depression.
This may reflect not only greater
self-awareness but also greater
victimization among individuals with
less obvious disability or supervision
and more distressed reactions to
bullying.54 These individuals may
make greater efforts to conceal
differences amid motivations to fit in
or avoid stigma or bullying, but such
attempts may come at significant
costs.82
–
85 Moreover, mistreatment,
rather than the self-perceived degree
of autism, may account for distress:
adults’ reports of quality of life related
to their quality of social support
rather than endorsed autistic traits.86
Indeed, autistic adults’ rating of
their own quality of life more often
relates to ecological factors such as
bullying, whereas parents’ (lower)
report of their adult children’s quality
of life relates more often to clinical
factors, such as their skill level.87
Thus, the literature reveals the
importance of autistic individuals’
unique perspectives on their own
lives and the need for research on
how to help them from an early
age to holistically understand their
strengths, differences, and needs in an
affirmative way that empowers them
to constructively face their challenges.
TOWARD SOCIAL ACCEPTANCE AND
SELF-ADVOCACY
Autistic people’s challenges in social
communication and subjective well-
being seem to be more a function
of dynamics with other people
than driven by individual deficits.
There is much evidence to support
dissociations between symptoms
and functioning, as well as the
benefits of accepting autism and full
societal inclusion for development
and well-being. Indeed, in this
review, I challenge the validity
and utility of functioning labels
for autism and the interpretation
of the “autism spectrum” as a
linear continuum. Social support
may mediate functioning, because
individuals with initially lower
skills may experience more benefits
from enriched social environments,
such as parental input for language
growth and cognitive development
from inclusive educational settings.
Furthermore, subtler manifestations
of autism increase individuals’
risk of active peer rejection, loss of
formal supports as they transition
into adulthood, and distress. Thus,
in this review, I provide support
for the notion of autism as a cloudy
constellation of uneven skills88 and
high within-person variability,
89
with performance contingent on the
quality of social experiences and
support well-suited for individual
abilities or potential and needs.
Widespread autism acceptance may
help to provide enriched experiences.
The benefits of parental acceptance
of autism for the family summarized
in this review dovetail with evidence
of a positive relationship between
awareness of the neurodiversity
movement and a preference for
referring to oneself as “autistic, ”
an opposition to a cure, and more
positive emotions toward one’s
own autism among individuals on
the autism spectrum, alongside
parallel results for nonautistic
people imagining themselves in that
position.7
The authors of future studies
should consider how the complex
relationship between autism and
quality of life depends not only on
social factors but also on the specific
traits or behaviors associated with
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PEDIATRICS Volume 141, number s4, April 2018 S365
autism, in that they may sometimes
improve individuals’ functioning
and well-being. Individuals with the
direct lived experience of autism can
best explain the distinction between
normalization and quality of life, such
as how avoiding eye contact90 and
repetitive motor movements91,
92 may
help them to self-regulate, whereas
intense interests can build success
in education and employment.93–
95
Many more researchers need to
actively include autistic people
throughout the scientific process
and focus on their priorities, which
often lean strongly toward services
and adulthood96: clearly useful and
underresourced areas. Self-advocates
also prioritize the need for every
autistic person to have functional
communication, and they may have
insights into how to provide effective
support or assistive technology to
realize this goal, so that everyone has
skills and access to clearly express
personal wants and needs.9,
10, 97
ACKNOWLEDGMENTS
The author thanks Alyssa
Delagnes, Amanda Gulsrud, and
Kristen Gillespie-Lynch for their
proofreading and comments on
earlier drafts of this article and
thanks the editors and reviewers for
their constructive comments.
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DOI: 10.1542/peds.2016-4300N
2018;141;S362Pediatrics
Steven K. Kapp
Autism Spectrum
Social Support, Well-being, and Quality of Life Among Individuals on the
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Autism Spectrum
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