A capabilities approach to understanding and supporting autistic adulthood

Abstract

There is little comprehensive research into autistic adulthood, and even less into the services and supports that are most likely to foster flourishing adult autistic lives. This limited research is partly because autism is largely conceived as a condition of childhood, but this focus of research has also resulted from the orthodox scientific approach to autism, which conceptualizes autistic experience almost entirely as a series of biologically derived functional deficits. Approaching autism in this way severely limits what is known about this neurodevelopmental difference, how research is conducted and the services and supports available. In this Review, we adopt an alternative research strategy: we apply Martha Nussbaum’s capabilities approach, which focuses on ten core elements of a thriving human life, to research on autistic adulthood. In doing so, we identify areas where autistic adults thrive and where they often struggle, and highlight issues to which researchers, clinicians and policymakers should respond. The resulting picture is far more complex than conventional accounts of autism imply. It also reveals the importance of engaging autistic adults directly in the research process to make progress towards genuinely knowing autism and supporting flourishing autistic lives.

A more holistic approach to autism using the International Classification of Functioning: The why, what, and how of functioning

“…There are multiple ways in which this framework is ideal for application to holistic autism research and practice. It applies a biopsychosocial model of functioning, embracing the fact that these domains are interactive and all relevant to living a good life (Pellicano et al, 2022). It also uses accessible language, bridging disciplines and enabling communication with stakeholders.…”

Impact of the COVID-19 Pandemic on Autistic Adults: a Scoping Review

“…This latter finding might provide one explanation for the apparent stability in psychological wellbeing reported by several prospective, quantitative studies [ 47 •, 48 , 49 ]. Another possibility is that such stability is driven more by the consistently deeply unsatisfactory quality of life and poor mental health experienced by many Autistic adults pre-pandemic (see [ 14 ], for review) than the impact of the pandemic itself.…”

“…The current scoping review sought to synthesise evidence of the impact of the COVID-19 pandemic on the lives of Autistic adults. We focus on Autistic adults specifically given that they are an under-represented group in current autism research [ 11 , 12 ]; are more likely to have co-occurring physical and mental health conditions [ 10 , 13 •], which place them at risk of health complications following COVID-19 infection; and have poorer life outcomes across many domains, often due to systemic and social failures to provide the requisite support [ 14 ].…”

Integrating autistic perspectives into autism science: A role for autistic autobiographies

“…Participatory research is bringing autistic perspectives to autism science in a very direct and necessary way to address these issues. Both (non-autistic and autistic) researchers (den Houting et al, 2020) and autistic research participants (Pellicano et al, 2021) have generally favorable attitudes towards it, while acknowledging its challenges (Pickard et al, 2021). It seems likely that interacting with autistic researchers and community members on research teams plays an important role in challenging non-autistic researchers' perceptions of autism.…”