Hersh Lynnette, Dwyer Patrick, Kapp Steven K, Shevchuk-Hill Sergey, Gurba Ava N, Kilgallon Elizabeth, Mair Ally Pax Arcari, Chang David S, Rivera Susan M, Gillespie-Lynch Kristen
Department of Psychology, University of California, Davis, California, USA.
Center for Mind and Brain, University of California, Davis, California, USA.
Autism Adulthood. 2024 Sep 16;6(3):253-271. doi: 10.1089/aut.2023.0202. eCollection 2024 Sep.
Controversy regarding the neurodiversity movement (NDM), the social and medical models of disability, autism intervention goals, and causal attributions of disability contributes to divides in the autistic and autism communities. The present study investigates the views of autistic and non-autistic autistic and autism community members on these topics. We explored whether these views are shaped by having close relationships to autistic people with intellectual disabilities (ID) and nonspeaking autistic (NSA) people.
A total of 504 autistic and autism community members (278 autistic, 226 non-autistic) completed an online survey about theoretical models and intervention goals. Participants reported whether they had one or more close relationships with NSA people, autistic people with ID, neither, or both.
Overall, there was considerable consensus regarding desired intervention goals: normalization goals were generally opposed, while participants generally supported well-being, societal reform, supportive environment, and adaptive skill goals. While autistic participants reported less support for normalization and adaptive skills goals than non-autistic participants, they expressed somewhat more enthusiasm for societal reform and supportive environments than non-autistic people. Autistic people supported the NDM more and the medical model less than non-autistic people. Those close to autistic people with ID gave higher ratings to adaptive skill goals. On average, participants not close to autistic people with ID saw the challenges of those without ID as being slightly more due to environmental/social factors than the challenges of those with ID; there was no such statistical difference among those close to autistic people with ID.
Further research investigating community views, with the inclusion of more autistic people with ID and NSA people themselves, is needed, but the results of this study suggest that the broader autistic and autism communities see NDM-consistent intervention goals as appropriate for all autistic people, including NSA people and those with ID. As autism interventions have often pursued unpopular normalization goals, this suggests directions for reform.
关于神经多样性运动(NDM)、残疾的社会和医学模式、自闭症干预目标以及残疾的因果归因存在争议,这导致了自闭症患者群体和自闭症相关社群的分歧。本研究调查了自闭症患者群体和非自闭症患者群体中自闭症相关社群成员对这些主题的看法。我们探讨了这些观点是否受到与智障自闭症患者(ID)和无语言能力自闭症患者(NSA)有密切关系的影响。
共有504名自闭症患者群体和自闭症相关社群成员(278名自闭症患者,226名非自闭症患者)完成了一项关于理论模型和干预目标的在线调查。参与者报告他们是否与NSA患者、ID自闭症患者有一个或多个密切关系,或者两者都没有,或者两者都有。
总体而言,在期望的干预目标方面存在相当大的共识:正常化目标普遍遭到反对,而参与者普遍支持幸福感、社会改革、支持性环境和适应性技能目标。虽然自闭症参与者对正常化和适应性技能目标的支持低于非自闭症参与者,但他们对社会改革和支持性环境的热情略高于非自闭症参与者。与非自闭症患者相比,自闭症患者对NDM的支持更多,对医学模式的支持更少。与ID自闭症患者关系密切的人对适应性技能目标的评价更高。平均而言,与ID自闭症患者关系不密切的参与者认为,没有ID的自闭症患者所面临的挑战,相比有ID的自闭症患者,更多是由于环境/社会因素导致的;而与ID自闭症患者关系密切的参与者之间没有这种统计差异。
需要进一步开展研究,纳入更多ID自闭症患者和NSA患者本人,以调查社群观点,但本研究结果表明,更广泛的自闭症患者群体和自闭症相关社群认为,与NDM一致的干预目标适用于所有自闭症患者,包括NSA患者和ID自闭症患者。由于自闭症干预措施常常追求不受欢迎的正常化目标,这为改革指明了方向。