Conducting ethical, co-produced research with autistic individuals with an eating disorder: best practice guidelines
Date published: 21/12/24
Authors: 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 Darling, Lin Fidgin, Laura Campbell, Tasha Suratwala, Casper Temple, Kayleigh MacDonald, Sammi Carden, Bryanna Lazich, Jess Kerr-Gaffney, Michelle Sader, Gordon Waiter, Kate Tchanturia, Fiona Duffy & The Eating Disorder and Autism Collaborative Network (EDAC)
Published in: Eating Disorders
Objective
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.
Conclusions
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.
Clinical Implications
- There is increasing awareness of an overlap between autism and eating disorders and concerns around the effectiveness of eating disorder treatment for this population
- There is a lack of research with autistic individuals with eating disorders and a pressing need to prioritise meaningful co-produced research
- Clinical practice should be informed by autism-affirming eating disorder research
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