Social Support, Well-being, and Quality of Life Among Autistic People

Great piece from the American Academy of Pediatrics on how inclusion, acceptance, agency, self-advocacy, and responsive parenting/teaching support adaptive functioning, language acquisition, subjective well-being, and transition to adulthood. The findings align nicely with social model self-advocacy.

Selected passages:

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 skills and high within-person variability, with performance contingent on the quality of social experiences and support well-suited for individual abilities or potential and needs.

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”) 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. 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.

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, particularly among those who need it most: those with lower levels of expression. Although the same principle applies in typical development, responsive caregiving and input may especially benefit language learning for autistic children, particularly for those who have more difficulty responding to others’ attention. 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 engagement through encouraging the child to initiate interactions, which may especially benefit the children who have the most difficulty producing their own goal-directed actions in reaction to others’ movements. This aligns well with the advice of autism rights movement founder Sinclair, 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.

Instead, higher autism severity, as assessed by the parents’ questionnaire-based report, sometimes inversely relates to their acceptance of their child’s autism, 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, likely because of a lowered perception of the possibility for the child to outgrow his or her challenges.

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. In addition, higher levels of educational inclusion relate to better functioning for autistic adolescents and adults, beyond the effects of demographic and individual characteristics. Furthermore, autistic adolescents with intellectual disability had better academic performance in inclusive versus segregated classrooms, likely in significant part because they received more structured instruction time and their educational plan had greater focus on applied skill development (as contrasted with rote procedural goals). These benefits of inclusion appear driven in part by higher expectations based in confident understanding of needs, more naturalistic and responsive teaching methods as opposed to behavioral management, and access to typically developing peers.

An autism-typical pattern of poor adaptive functioning relative to IQ tends to rise with greater age and IQ, and autistic young adults as a group tend to have lower employment rates than their peers with intellectual disabilities.

Source: Social Support, Well-being, and Quality of Life Among Individuals on the Autism Spectrum | SUPPLEMENT ARTICLES | Pediatrics

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