Conducting ethical, co-produced research with autistic individuals with an eating disorder: best practice guidelines

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Nimbley, E., Maloney, E., Gillespie‐Smith, K., Sharpe, H., Buchan, K., Kettley, S., Bragg, J., Shepherd, A., Choat, B., Long, J., Whateley, I., Booth, O., Baker, J. A., Renton, N., Nuttal, E., Darley, H., Fidgin, L., Campbell, L., Suratwala, T.,..., & (EDAC), T. E. D. a. A. C. N. (2024). Conducting ethical, co-produced research with autistic individuals with an eating disorder: best practice guidelines. Eating Disorders, 34(1), 90-100. https://doi.org/10.1080/10640266.2024.2441540

Publication date: 21 Dec 2024 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
29
Publication authors identified as autistic
1 / 29 (3.4%)
  1. Emy Nimbley
  2. Ellen Maloney *
  3. Karri Gillespie‐Smith
  4. Helen Sharpe
  5. Kyle Buchan
  6. Sarah Kettley
  7. Jessica Bragg
  8. Alison Shepherd
  9. Becky Choat
  10. Joseph Long
  1. Isla Whateley
  2. Ollie Booth
  3. Julie-Anne Baker
  4. Nix Renton
  5. Emily Nuttal
  6. Harriet Darley
  7. Lin Fidgin
  8. Laura Campbell
  9. Tasha Suratwala
  10. Casper Temple
  1. Kayleigh MacDonald
  2. Sammi Carden
  3. Bryanna Lazich
  4. Jess Kerr‐Gaffney
  5. Michelle Sader
  6. Gordon D. Waiter
  7. Kate Tchanturia
  8. Fiona Duffy
  9. The Eating Disorder and Autism Collaborative Network (EDAC)

Abstract

There is a notable overlap between autism and eating disorders (EDs), and autistic individuals may experience poorer ED treatment outcomes than non-autistic peers. To make meaningful change in this field, it is imperative that we actively engage in co-production of research, however there are currently no guidelines to support co-production with autistic people with eating disorders. This paper reports on best practice guidelines that were co-produced across a series of workshops bringing together autistic people with EDs, researchers, clinicians, third-sector organisations, and parents/carers. The guidelines are intended to be used as a foundation for future co-produced autism and ED research. By creating a trusted, ethical co-production relationship, we hope to generate more clinically meaningful and translatable research.

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 11:31.

Cited references
30
Total cited references integrated for this publication.
Cited references with an identified autistic author
7 / 30 (23.3%)
Cited author occurrences identified as autistic
11 / 192 (5.7%)
Among occurrences linked to AutiHub author records: 11 / 71 (15.5%). Distinct cited authors identified as autistic: 10 / 171 (5.8%).
Cited author occurrences linked to AutiHub author records
71 / 192 (37.0%)
Distinct linked cited authors: 54 / 171 (31.6%)
Linked cited-author occurrences not identified as autistic
60 / 71 (84.5%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 60 / 192 (31.2%). Distinct linked cited authors not identified as autistic: 44 / 54 (81.5%).
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