Review Green Open Access 2022

A capabilities approach to understanding and supporting autistic adulthood

Nature Reviews Psychology
Journal · Vol. 1 · Issue 11 · pp. 624-639
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. © 2022, Springer Nature America, Inc.

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Author Affiliations
Macquarie University, Sydney, NSW, Australia, Educational and Health Psychology, University College London, London, United Kingdom
Macquarie University, Sydney, NSW, Australia
Macquarie University, Sydney, NSW, Australia, Reframing Autism, Sydney, NSW, Australia
University College London, London, United Kingdom
Funding & Acknowledgements
Simons Foundation, SF
Funding text 1: The authors thank L. Crane, J. Lowe and D. Tan for their extremely helpful comments on a previous version of this manuscript. This work has been funded through an Australian Research Council Future Fellowship awarded to E.P. (FT190100077). The views expressed are the views of the authors alone and do not necessarily represent the views of their organizations or funding sources.; Funding text 2: E.P. reports grants from the Australian Government Department of Education, Skills and Employment, the Australian Research Council, Australia’s National Disability and Insurance Agency’s Information, Linkages and Capacity Building Program, Australia’s National Health and Medical Research Council, Australia’s Cooperative Research Centre for Living with Autism (Autism CRC) and Simons Foundation Autism Research Initiative, and has received honoraria for invited talks from the International Society for Autism Research and Aspect Australia. G.H. reports grants from the Australian Government Department of Education, Skills and Employment, and sits on the Board of Directors for Amaze, the peak organization for autistic people and their families in Victoria, Australia, and the Disability Advisory Council for Australia’s Victorian State Government, for which she receives meeting attendance payments. M.H. is CEO of the not-for-profit organization Reframing Autism Ltd and co-chair of the Australasian Autism Research Council (unremunerated), and reports grants from the Australian Government Department of Education, Skills and Employment, and Australia’s National Disability and Insurance Agency’s Information, Linkages and Capacity Building Program. W.L. reports grants from the Australian Government Department of Education, Skills and Employment, and Autism CRC. He is a member of the Australasian Autism Research Council (unremunerated), a participant and advisor for Autism CRC and an ambassador for the I CAN Network, and receives royalties from books and occasional fees for workshop and invited addresses. R.L. reports grants from the Australian Government Department of Education, Skills and Employment, and Autism CRC. M.S. reports grants from the Paul Ramsay Foundation and from the University of Sydney, is an Associate Fellow at the Said Business School, Oxford and assists fundraising efforts with various philanthropic groups in his role as Director of the UCL Policy Lab. All other authors declare no competing interests.
Australian Research Council, ARC
Grant: FT190100077
Funding text 1: The authors thank L. Crane, J. Lowe and D. Tan for their extremely helpful comments on a previous version of this manuscript. This work has been funded through an Australian Research Council Future Fellowship awarded to E.P. (FT190100077). The views expressed are the views of the authors alone and do not necessarily represent the views of their organizations or funding sources.; Funding text 2: E.P. reports grants from the Australian Government Department of Education, Skills and Employment, the Australian Research Council, Australia’s National Disability and Insurance Agency’s Information, Linkages and Capacity Building Program, Australia’s National Health and Medical Research Council, Australia’s Cooperative Research Centre for Living with Autism (Autism CRC) and Simons Foundation Autism Research Initiative, and has received honoraria for invited talks from the International Society for Autism Research and Aspect Australia. G.H. reports grants from the Australian Government Department of Education, Skills and Employment, and sits on the Board of Directors for Amaze, the peak organization for autistic people and their families in Victoria, Australia, and the Disability Advisory Council for Australia’s Victorian State Government, for which she receives meeting attendance payments. M.H. is CEO of the not-for-profit organization Reframing Autism Ltd and co-chair of the Australasian Autism Research Council (unremunerated), and reports grants from the Australian Government Department of Education, Skills and Employment, and Australia’s National Disability and Insurance Agency’s Information, Linkages and Capacity Building Program. W.L. reports grants from the Australian Government Department of Education, Skills and Employment, and Autism CRC. He is a member of the Australasian Autism Research Council (unremunerated), a participant and advisor for Autism CRC and an ambassador for the I CAN Network, and receives royalties from books and occasional fees for workshop and invited addresses. R.L. reports grants from the Australian Government Department of Education, Skills and Employment, and Autism CRC. M.S. reports grants from the Paul Ramsay Foundation and from the University of Sydney, is an Associate Fellow at the Said Business School, Oxford and assists fundraising efforts with various philanthropic groups in his role as Director of the UCL Policy Lab. All other authors declare no competing interests.
Australian Research Council, ARC
Funding text 1: The authors thank L. Crane, J. Lowe and D. Tan for their extremely helpful comments on a previous version of this manuscript. This work has been funded through an Australian Research Council Future Fellowship awarded to E.P. (FT190100077). The views expressed are the views of the authors alone and do not necessarily represent the views of their organizations or funding sources.; Funding text 2: E.P. reports grants from the Australian Government Department of Education, Skills and Employment, the Australian Research Council, Australia’s National Disability and Insurance Agency’s Information, Linkages and Capacity Building Program, Australia’s National Health and Medical Research Council, Australia’s Cooperative Research Centre for Living with Autism (Autism CRC) and Simons Foundation Autism Research Initiative, and has received honoraria for invited talks from the International Society for Autism Research and Aspect Australia. G.H. reports grants from the Australian Government Department of Education, Skills and Employment, and sits on the Board of Directors for Amaze, the peak organization for autistic people and their families in Victoria, Australia, and the Disability Advisory Council for Australia’s Victorian State Government, for which she receives meeting attendance payments. M.H. is CEO of the not-for-profit organization Reframing Autism Ltd and co-chair of the Australasian Autism Research Council (unremunerated), and reports grants from the Australian Government Department of Education, Skills and Employment, and Australia’s National Disability and Insurance Agency’s Information, Linkages and Capacity Building Program. W.L. reports grants from the Australian Government Department of Education, Skills and Employment, and Autism CRC. He is a member of the Australasian Autism Research Council (unremunerated), a participant and advisor for Autism CRC and an ambassador for the I CAN Network, and receives royalties from books and occasional fees for workshop and invited addresses. R.L. reports grants from the Australian Government Department of Education, Skills and Employment, and Autism CRC. M.S. reports grants from the Paul Ramsay Foundation and from the University of Sydney, is an Associate Fellow at the Said Business School, Oxford and assists fundraising efforts with various philanthropic groups in his role as Director of the UCL Policy Lab. All other authors declare no competing interests.
National Health and Medical Research Council, NHMRC
Funding text 1: The authors thank L. Crane, J. Lowe and D. Tan for their extremely helpful comments on a previous version of this manuscript. This work has been funded through an Australian Research Council Future Fellowship awarded to E.P. (FT190100077). The views expressed are the views of the authors alone and do not necessarily represent the views of their organizations or funding sources.; Funding text 2: E.P. reports grants from the Australian Government Department of Education, Skills and Employment, the Australian Research Council, Australia’s National Disability and Insurance Agency’s Information, Linkages and Capacity Building Program, Australia’s National Health and Medical Research Council, Australia’s Cooperative Research Centre for Living with Autism (Autism CRC) and Simons Foundation Autism Research Initiative, and has received honoraria for invited talks from the International Society for Autism Research and Aspect Australia. G.H. reports grants from the Australian Government Department of Education, Skills and Employment, and sits on the Board of Directors for Amaze, the peak organization for autistic people and their families in Victoria, Australia, and the Disability Advisory Council for Australia’s Victorian State Government, for which she receives meeting attendance payments. M.H. is CEO of the not-for-profit organization Reframing Autism Ltd and co-chair of the Australasian Autism Research Council (unremunerated), and reports grants from the Australian Government Department of Education, Skills and Employment, and Australia’s National Disability and Insurance Agency’s Information, Linkages and Capacity Building Program. W.L. reports grants from the Australian Government Department of Education, Skills and Employment, and Autism CRC. He is a member of the Australasian Autism Research Council (unremunerated), a participant and advisor for Autism CRC and an ambassador for the I CAN Network, and receives royalties from books and occasional fees for workshop and invited addresses. R.L. reports grants from the Australian Government Department of Education, Skills and Employment, and Autism CRC. M.S. reports grants from the Paul Ramsay Foundation and from the University of Sydney, is an Associate Fellow at the Said Business School, Oxford and assists fundraising efforts with various philanthropic groups in his role as Director of the UCL Policy Lab. All other authors declare no competing interests.
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