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

      , , ,
      Frontiers in Psychology
      Frontiers Media SA

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          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.

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          The Politics of Disablement

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            Which terms should be used to describe autism? Perspectives from the UK autism community.

            Recent public discussions suggest that there is much disagreement about the way autism is and should be described. This study sought to elicit the views and preferences of UK autism community members - autistic people, parents and their broader support network - about the terms they use to describe autism. In all, 3470 UK residents responded to an online survey on their preferred ways of describing autism and their rationale for such preferences. The results clearly show that people use many terms to describe autism. The most highly endorsed terms were 'autism' and 'on the autism spectrum', and to a lesser extent, 'autism spectrum disorder', for which there was consensus across community groups. The groups disagreed, however, on the use of several terms. The term 'autistic' was endorsed by a large percentage of autistic adults, family members/friends and parents but by considerably fewer professionals; 'person with autism' was endorsed by almost half of professionals but by fewer autistic adults and parents. Qualitative analysis of an open-ended question revealed the reasons underlying respondents' preferences. These findings demonstrate that there is no single way of describing autism that is universally accepted and preferred by the UK's autism community and that some disagreements appear deeply entrenched.
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              On the ontological status of autism: the ‘double empathy problem’

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                Author and article information

                Journal
                Frontiers in Psychology
                Front. Psychol.
                Frontiers Media SA
                1664-1078
                April 12 2021
                April 12 2021
                : 12
                Article
                10.3389/fpsyg.2021.635690
                a26c2277-999c-408f-becf-208845cb2830
                © 2021

                Free to read

                https://creativecommons.org/licenses/by/4.0/

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