Reporting participatory methods and author positionality in autism

Added on 29/07/2024

Type de contenu

Journal article of the type Editorial ( ; english)

Reporting participatory methods and author positionality in autism published in the journal "Autism" Preprint, 3 pages , doi: 10.1177/13623613241266950

- 23% of authors cited in the bibliography of this resource have publicly identified as autistic (9 out of 39 authors).
- 44% of references cited in this resource contain at least one author who has publicly identified as autistic (4 out of 9 references).

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Summary/Presentation

In 2021, the journal Autism followed the lead of the British Medical Journal by introducing a mandatory Community Involvement Statement for all Research Reports. The Community Involvement statement was designed, as described in our manuscript submission guidelines, to encourage: ‘research that is actively carried out “with” or “by” members of the Autistic and autism communities (rather than “to”, “about”, or “for” them)’. A range of terms are used to describe this kind of work, including coproduction, participatory research and patient and public involvement and engagement (PPIE). Now, as the journal adjusts its author guidelines in relation to community involvement, we want to share the decision-making behind that change and reinforce our commitment to both doing and reporting participatory work.

For your information:

(1) References in blue are resources listed on our site.

(2) Authors listed in this bibliography whose names are in color have published other resources referenced on the site. Clicking on the name allows you to see the list of resources they have published and shared on the site.

(3) Authors whose names are followed by an asterisk have publicly disclosed being autistic.


  • H. Ellis, T. Nicholls (2024). "How the Moonshot Vision can unite autistic research and partnerships". Autism, 28. doi:10.1177/13623613231222733

  • L. Roche, D. Adams, M. Clark (2020). "Research priorities of the autism community: A systematic review of key stakeholder perspectives". Autism, 25. doi:10.1177/1362361320967790

  • S. Weschke, D. Franzen, A. Sierawska, L. Bonde, D. Strech, S. Schorr (2023). "Reporting of patient involvement: a mixed-methods analysis of current practice in health research publications using a targeted search strategy". BMJ Open, 13. doi:10.1136/bmjopen-2022-064170

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