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Social Support, Well-Being, and Quality of Life Among Individuals on the Autism Spectrum Steven K

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Social Support, Well-Being, and Quality of Life Among Individuals on the Autism Spectrum Steven K Social Support, Well-being, and QualitySteven K. Kapp, PhD of Life Among Individuals on the Autism Spectrum – 1 3 4, 5 Diverse theoretical perspectives and empirical findings 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,6, 7 as in the case of the author, rather than person-first language such as person with autism ) 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 neutral8 10 or positive ways, although other people may misunderstand or stigmatize atypical behaviors. 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. 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. Downloaded from www.aappublications.org/news by guest on October 2, 2021 SUPPLEMENT ARTICLE PEDIATRICS Volume 141, number s4, April 2018:e20164300 ADAPTIVE FUNCTIONING ’ ’ Parental Support their children s autism across the school, particularly for those with ’ – Language Acquisition spectrum. Parents 32acceptance35 of initially greater social and41 adaptive their child s autism and36 positive behavior impairments. In addition, emotions toward their child do not higher levels of educational inclusion Actively responsive rather than relate to child characteristics such relate to better functioning for directive or less involved parenting as developmental level or autism autistic adolescents and adults, severity as assessed by experimental beyond the effects of demographic helps to promote positive– social ’ 42 measures. Instead, higher autism and individual characteristics. engagement, especially11 in13 infants susceptible to autism. Responsive severity, as assessed by the parents Furthermore, autistic adolescents ’ questionnaire-based report, with intellectual disability had better parenting (eg, parenting that follows ’ children s focus of attention and labels sometimes inversely relates to their academic performance in inclusive43 objects of interest while allowing the 37acceptance of their child s autism, versus segregated classrooms, ’ which suggests that subjective likely in significant part because they child to take the– lead) contributes to perception rather than empirically received44 more structured instruction young autistic14 children17 s language demonstrated factors may drive time and their educational plan development, particularly – acceptance. An increase in autism had greater focus on applied skill among those who need it most: those18 21 ’ symptoms over time also relates to development (as contrasted with rote with lower levels of expression. 45 more parental38 acceptance of a child s procedural goals ). These benefits Although the same principle22 applies in typical development, responsive autism, likely because of a lowered of inclusion appear driven in part by caregiving and input may especially perception of the possibility for the higher expectations based46 in confident child to outgrow his or 32,her35 challenges. understanding of needs, more benefit language23, 24 learning for autistic children, particularly for those Parent-child reciprocit39 y naturalistic and– responsive teaching ’ ’ and relationships have often methods as opposed47 50 to behavioral who have more difficulty25 responding ’ to others attention. Parents revealed independence from autism management, and access51 to severity, whereas the parents typicallySocial Inclusion developing peers. strategies to synchronize their ’ ’ acceptance of autism strengthens the behavior in response to their autistic ’ 32, 34, 35 ’ child s, such as matching his or her child s functioning in these areas. Mothers understanding of their Beyond classroom inclusion, peers pace, may drive language gains26, from autistic child also may34 not relate to ineffective attitudes rather than 27joint parent-child engagement child characteristics, but acceptance severe autism symptoms pose through encouraging28 the child to initiate interactions, which may of their child's autism drives better a substantial barrier to social especially benefit the children who recognition of and responsiveness to integration in and outside school. have the most difficulty producing their child's communication, which40 in In educationally inclusive school ’ turn improves the relationship, environments, peers may more their own goal-directed actions 29,in likely in part through37 improving often reject autistic children who 3reaction0 to others movements. This aligns well with the advice maternal well-being. These findings make more prosocial approaches of autism rights movement founder challenge diagnostic criteria that but may52 not reject those who act 31 “ Sinclair, in a foundational essay largely implicate difficulties with shy. Similarly, among autistic primarily for parents, to let your reciprocity and relationships as youth, those with attention-deficit/ ” “ ” child teach you a little of her language, problems of the labeled individual, hyperactivity disorder more at least in the parent-child context, guide you a little way into his world ’ often have an active53 but odd and demonstrate the need for as a means of helping the child adapt ’ interaction style and54 suffer from to the dominant culture and for the further efforts to increase parents peer victimization. Highly verbal “ ’ well-being of the family. Fortunately, acceptance of their child s autism. autistic adolescents or young adults ” School Inclusion learning to speak their child s with greater55 teacher-reported social Academic Inclusion language as a parenting strategy competence and lower self- and ’ has had near-universal support, parent-reported autism symptoms56 regardless of people s relationship experience57 more victimization and ’ Similarly, data reveal the benefits stigma, in addition to having more to autism or support for the 7 neurodiversity movement s beliefs. of classroom inclusion for autistic anxiety, depression,56 and suicidal Autism Acceptance children with diverse intellectual and ideation. Altogether, studies academic needs. Early intervention reveal that students or individuals delivered in inclusive as opposed with less severe autism may more ’ There is evidence to support the to segregated preschool settings frequently suffer from bullying, benefits of parents acceptance of predicts higher IQ in elementary perhaps because peers interpret their Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 141, number s4, April 2018 S363 SUBJECTIVE WELL-BEING behavior as indicating oddness– rather than driven by individual deficits. than disability and thus as more58 60 There is much evidence to support intentional or irresponsible. A severe behavioral manifestation dissociations between symptoms (Transition to) Adulthood of autism or a high need for support and functioning, as well as the not only does not preclude a high benefits of accepting autism and full quality of life from a subjective societal inclusion for development Appropriate support rather than perspective but also usually relates and well-being. Indeed, in this severity of disability plays a to higher well-being within the – review, I challenge the
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