Community Member Views on Autism Intervention: Effects of Closeness to Autistic People with Intellectual Disabilities And Nonspeaking Autistic People.

Autism in adulthood : challenges and management Pub Date : 2024-09-16 eCollection Date: 2024-09-01 DOI:10.1089/aut.2023.0202
Lynnette Hersh, Patrick Dwyer, Steven K Kapp, Sergey Shevchuk-Hill, Ava N Gurba, Elizabeth Kilgallon, Ally Pax Arcari Mair, David S Chang, Susan M Rivera, Kristen Gillespie-Lynch
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Abstract

Background: 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.

Methods: 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.

Results: 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.

Conclusion: 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.

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社区成员对自闭症干预的看法:与智障自闭症患者和不说话的自闭症患者亲近的影响。
背景:有关神经多样性运动(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关系等方面的争议导致了自闭症和自闭症社区的分裂。本研究调查了自闭症和非自闭症自闭症社区成员对这些话题的看法。我们探讨了与智障自闭症患者(ID)和不说话自闭症患者(NSA)关系密切是否会影响这些观点:共有 504 名自闭症患者和自闭症社区成员(278 名自闭症患者,226 名非自闭症患者)完成了关于理论模型和干预目标的在线调查。参与者报告了他们是否与自闭症患者、患有智障的自闭症患者有一种或多种亲密关系,或两者都没有,或两者都有:总的来说,大家对期望的干预目标达成了相当大的共识:正常化目标普遍遭到反对,而参与者普遍支持幸福、社会改革、支持性环境和适应技能目标。自闭症参与者对正常化目标和适应技能目标的支持程度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患者。与非自闭症患者相比,自闭症患者更支持 "国家需求管理",而对医疗模式的支持较少。与智障自闭症患者关系密切的人对适应技能目标的评价较高。平均而言,与智障自闭症患者不亲近的参与者认为,与智障自闭症患者相比,非智障自闭症患者所面临的挑战更多是由环境/社会因素造成的;而与智障自闭症患者亲近的参与者则没有这种统计差异:结论:还需要进一步研究社区的观点,让更多的智障自闭症患者和非智障自闭症患者参与进来,但本研究的结果表明,更广泛的自闭症和自闭症社区认为,与 NDM 一致的干预目标适合所有自闭症患者,包括非智障自闭症患者和智障自闭症患者。由于自闭症干预往往追求不受欢迎的正常化目标,这为改革指明了方向。
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Community Member Views on Autism Intervention: Effects of Closeness to Autistic People with Intellectual Disabilities And Nonspeaking Autistic People. Call for Papers: Autism and Aging: A Lifespan Approach: Deadline for Manuscript Submission: January 15, 2024. A Qualitative Study of Autistic Adults' Quality of Life During the COVID-19 Pandemic and Lockdowns. Autistic People and Moving Home: A Systematic Review. Early-Career Autism Researchers Are Shifting Their Research Directions: Tragedy or Opportunity?
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