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Improving research about us, with us: a draft framework for inclusive autism research

Chown, N, Robinson, J, Beardon, L, Downing, JJ ORCID: 0000-0003-3600-0400, Hughes, L, Leatherland, J, Fox, K, Hickman, L and MacGregor, D 2017 , 'Improving research about us, with us: a draft framework for inclusive autism research' , Disability and Society, vol. 32, no. 5 , pp. 720-734 , doi: 10.1080/09687599.2017.1320273.

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Abstract

It is both epistemologically as well as ethically problematic if the autistic voice is not heard in relation to social scientific research seeking to further develop knowledge of autism. Eversince autism first emerged, it has remained medicalised and almost exclusively the preserve of non-autistic researchers. More recently, autistic individuals have begun to contribute to autism research. However, the vast majority of research in autism is still undertaken on autistic people, rather than with them, and is often not concerned with improving the dayto-day lives of people with autism. We discuss the concepts of participatory research and emancipatory research before presenting a draft framework for what we regard as trulyinclusive research in autism. Our proposals are firmly based on ideas developed by the members of a university-based group of autistic adults (the Asperger’s Consultation Group) as well as the knowledge and experience of the other contributors.

Item Type: Article
Authors/Creators:Chown, N and Robinson, J and Beardon, L and Downing, JJ and Hughes, L and Leatherland, J and Fox, K and Hickman, L and MacGregor, D
Keywords: autism, research methods, disability
Journal or Publication Title: Disability and Society
Publisher: Carfax Publishing
ISSN: 0968-7599
DOI / ID Number: 10.1080/09687599.2017.1320273
Copyright Information:

Copyright 2017 Informa UK Limited, trading as Taylor & Francis Group

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