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

This publication is included in the Autistic Autism Scholarship Project. six authors of this publication are identified as autistic in the project.

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Chown, N., Robinson, J., Beardon, L., Downing, J., Hughes, E., Leatherland, J., Fox, K., Hickman, L., & MacGregor, D. (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
Publisher source (DOI) OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
9
Publication authors identified as autistic
6 / 9 (66.7%)
  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. Duncan 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.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 17:07.

Cited references
45
With a DOI
26
Without a DOI, from raw bibliography text
14
9 / 45 (20.0%) cited references include at least one author identified as autistic.
References with data to complete
11 / 45 (24.4%)
References with detected author names
42 / 45 (93.3%)
Without detected author names
3
Without a structured title
11
Without a stable identifier
14
References with raw author names still to review
2
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
68
From DOI or external metadata
67
From validated raw bibliography text
1
Raw names already validated
1
Raw names still to review
2
35 / 68 (51.5%) names are linked to an author already present in AutiHub. 33 / 68 (48.5%) names are not yet linked.
Names linked to a person identified as autistic
11 / 68 (16.2%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 11 / 35 (31.4%). Distinct people identified as autistic: 8 / 61 (13.1%).
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