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

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Chown, N., Robinson, J., Beardon, L., Downing, J., Hughes, E., Leatherland, J., Fox, K., Hickman, L., & Macgregor, D. H. (2017). Improving research about us, with us: a draft framework for inclusive autism research. Disability & Society, 32(5), 720-734. https://doi.org/10.1080/09687599.2017.1320273

Publication date: 5 May 2017 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
9
Publication authors identified as autistic
1 / 9 (11.1%)
  1. Nicholas Chown *
  2. Jackie Robinson
  3. Luke Beardon
  4. Jillian Downing
  5. Elizabeth Hughes
  1. Julia Leatherland
  2. Katrina Fox
  3. Laura Hickman
  4. D. H. Macgregor

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. 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.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Bibliography inclusion overview

These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.

Cited references
45
Total cited references integrated for this publication.
Cited references with an identified autistic author
9 / 45 (20.0%)
Cited author occurrences identified as autistic
11 / 67 (16.4%)
Among occurrences linked to AutiHub author records: 11 / 31 (35.5%). Distinct cited authors identified as autistic: 8 / 62 (12.9%).
Cited author occurrences linked to AutiHub author records
31 / 67 (46.3%)
Distinct linked cited authors: 26 / 62 (41.9%)
Linked cited-author occurrences not identified as autistic
20 / 31 (64.5%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 20 / 67 (29.9%). Distinct linked cited authors not identified as autistic: 18 / 26 (69.2%).
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