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

CHOWN, Nick, ROBINSON, Jackie, BEARDON, Luke, DOWNING, Jillian, HUGHES, Liz, LEATHERLAND, Julia, FOX, Katrina, HICKMAN, Laura and MACGREGOR, Duncan (2017). Improving research about us, with us: a draft framework for inclusive autism research. Disability and Society. (In Press)

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Beardon - Inclusive autism research manuscript with VoR statement.pdf - Accepted Version
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Link to published version:: 10.1080/09687599.2017.1320273


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. Ever since 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 day-to-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 truly inclusive 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
Research Institute, Centre or Group: Sheffield Institute of Education
Identification Number: 10.1080/09687599.2017.1320273
Depositing User: Carmel House
Date Deposited: 24 May 2017 09:37
Last Modified: 07 Aug 2017 12:00

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