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自闭症自我倡导与神经多样性运动:对自闭症早期干预研究与实践的启示

Autistic Self-Advocacy and the Neurodiversity Movement: Implications for Autism Early Intervention Research and Practice.

作者信息

Leadbitter Kathy, Buckle Karen Leneh, Ellis Ceri, Dekker Martijn

机构信息

Division of Neuroscience and Experimental Psychology, University of Manchester, Manchester, United Kingdom.

The Autscape Organisation, Coventry, United Kingdom.

出版信息

Front Psychol. 2021 Apr 12;12:635690. doi: 10.3389/fpsyg.2021.635690. eCollection 2021.

Abstract

The growth of autistic self-advocacy and the neurodiversity movement has brought about new ethical, theoretical and ideological debates within autism theory, research and practice. These debates have had genuine impact within some areas of autism research but their influence is less evident within early intervention research. In this paper, we argue that all autism intervention stakeholders need to understand and actively engage with the views of autistic people and with neurodiversity as a concept and movement. In so doing, intervention researchers and practitioners are required to move away from a normative agenda and pay diligence to environmental goodness-of-fit, autistic developmental trajectories, internal drivers and experiences, and autistic prioritized intervention targets. Autism intervention researchers must respond to these debates by reframing effectiveness, developing tools to measure autistic prioritized outcomes, and forming partnerships with autistic people. There is a pressing need for increased reflection and articulation around how intervention practices align with a neurodiversity framework and greater emphasis within intervention programmes on natural developmental processes, coping strategies, autonomy, and well-being.

摘要

自闭症自我倡导及神经多样性运动的发展在自闭症理论、研究与实践领域引发了新的伦理、理论和思想辩论。这些辩论在自闭症研究的某些领域产生了切实影响,但在早期干预研究中的影响力尚不明显。在本文中,我们认为所有自闭症干预利益相关者都需要理解并积极参与自闭症患者的观点,以及将神经多样性作为一个概念和运动来对待。这样做时,干预研究人员和从业者需要摒弃规范性议程,关注环境适配性、自闭症发展轨迹、内在驱动因素和经历,以及自闭症患者优先考虑的干预目标。自闭症干预研究人员必须通过重新界定有效性、开发测量自闭症患者优先考虑结果的工具,以及与自闭症患者建立伙伴关系来回应这些辩论。迫切需要围绕干预实践如何与神经多样性框架相契合进行更多反思和阐述,并且在干预项目中更加强调自然发展过程、应对策略、自主性和幸福感。

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