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

Journal article

Chown, N., Robinson, J., Beardon, L., Downing, J., 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 & Society. 32 (5), pp. 720-734. https://doi.org/10.1080/09687599.2017.1320273
AuthorsChown, N., Robinson, J., Beardon, L., Downing, J., Hughes, L., Leatherland, J., Fox, K., Hickman, L. and MacGregor, D.
Abstract

t 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.

KeywordsAsperger syndrome; autism; emancipatory research; participatory research; social model of disability
Year2017
JournalDisability & Society
Journal citation32 (5), pp. 720-734
PublisherTaylor & Francis
Digital Object Identifier (DOI)https://doi.org/10.1080/09687599.2017.1320273
Web address (URL)https://www.tandfonline.com/doi/abs/10.1080/09687599.2017.1320273
Publication dates
Print05 May 2017
Publication process dates
Accepted13 Apr 2017
Deposited20 Oct 2021
Accepted author manuscript
License
File Access Level
Open
Additional information

his is an Accepted Manuscript of an article published by Taylor & Francis in Disability and Society on 05/05/2017, available online: http://www.tandfonline.com/10.1080/09687599.2017.1320273

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D&S inclusive autism research article with VoR statement.docx
License: CC BY-NC 4.0
File access level: Open

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