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

journal contribution
posted on 2025-10-29, 14:28 authored by Emy Nimbley, Ellen Maloney, Karri Gillespie-Smith, Helen Sharpe, Kyle Buchan, Sarah Kettley, Jessica Bragg, Alison Shepherd, Becky Choat, Joseph Long, Isla Whateley, Ollie Booth, Julie-Anne Baker, Nix Renton, Emily Nuttal, Harriet Darley, Lin Fidgin, Laura Campbell, RSTasha SuratwalaRSTasha Suratwala, Casper Temple, Kayleigh MacDonald, Sammi Carden, Bryanna Lazich, Jess Kerr-Gaffney, Michelle Sader, Gordon Waiter, Kate Tchanturia, Fiona Duffy
<p dir="ltr">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.</p><h4><b>Clinical implications</b></h4><p><br></p><ul><li>There is increasing awareness of an overlap between autism and eating disorders and concerns around the effectiveness of eating disorder treatment for this population</li><li>There is a lack of research with autistic individuals with eating disorders and a pressing need to prioritise meaningful co-produced research</li><li>Clinical practice should be informed by autism-affirming eating disorder research</li></ul><p><br></p>

Funding

Enhancing Eating Disorder research networks: The Eating Disorders and Autism Collaborative (EDAC)

Medical Research Council

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History

School

  • Social Sciences and Humanities

Published in

Eating Disorders

Pages

1 - 11

Publisher

Informa UK Limited / Taylor & Francis Group, LLC

Version

  • AM (Accepted Manuscript)

Rights holder

© Taylor & Francis Group, LLC

Publisher statement

This is an Accepted Manuscript of an article published by Taylor & Francis in [JOURNAL TITLE] on [date of publication], available at: http://www.tandfonline.com/10.1080/10640266.2024.2441540

Publication date

2024-12-21

Copyright date

2024

ISSN

1064-0266

eISSN

1532-530X

Language

  • en

Depositor

Miss Tasha Suratwala. Deposit date: 27 October 2025

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