Pellicano Elizabeth, Fatima Unsa, Hall Gabrielle, Heyworth Melanie, Lawson Wenn, Lilley Rozanna, Mahony Joanne, Stears Marc
Macquarie School of Education, Macquarie University, Sydney, New South Wales Australia.
Department of Clinical, Educational and Health Psychology, University College London, London, UK.
Nat Rev Psychol. 2022;1(11):624-639. doi: 10.1038/s44159-022-00099-z. Epub 2022 Sep 5.
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.
针对自闭症成年人的全面研究较少,而对最有可能促进自闭症成年人过上充实生活的服务与支持的研究更少。这种有限的研究部分是因为自闭症在很大程度上被视为一种儿童疾病,但这种研究重点也是源于对自闭症的正统科学研究方法,该方法几乎完全将自闭症体验概念化为一系列生物学衍生的功能缺陷。以这种方式研究自闭症严重限制了我们对这种神经发育差异的了解、研究的开展方式以及现有的服务与支持。在本综述中,我们采用了一种替代研究策略:我们将玛莎·努斯鲍姆的能力方法应用于自闭症成年人的研究,该方法关注人类美好生活的十个核心要素。通过这样做,我们确定了自闭症成年人茁壮成长的领域以及他们经常面临困难的领域,并强调了研究人员、临床医生和政策制定者应予以回应的问题。由此呈现的情况远比关于自闭症的传统描述所暗示的要复杂得多。它还揭示了让自闭症成年人直接参与研究过程对于真正了解自闭症并支持自闭症患者过上充实生活取得进展的重要性。