Conducting ethical, co-produced research with Autistic individuals with an eating disorder: Best practice guidelines

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 Nuttall; 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; Eating Disorder and Autism Collaborative Network (EDAC)

doi:10.1080/10640266.2024.2441540

Conducting ethical, co-produced research with Autistic individuals with an eating disorder: Best practice guidelines

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 Nuttall, Harriet Darling, Lin Fidgin, Laura Campbell, Tasha Suratwala, Casper TempleKayleigh MacDonald, Sammi Carden, Bryanna Lazich, Jess Kerr-Gaffney, Michelle Sader, Gordon Waiter, Kate Tchanturia, Fiona Duffy, Eating Disorder and Autism Collaborative Network (EDAC)

Research output: Contribution to journal › Article › peer-review

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.

Original language	English
Pages (from-to)	1-11
Number of pages	11
Journal	Eating Disorders: The Journal of Treatment & Prevention (EDJTP)
Early online date	21 Dec 2024
DOIs	https://doi.org/10.1080/10640266.2024.2441540
Publication status	E-pub ahead of print - 21 Dec 2024

Keywords / Materials (for Non-textual outputs)

eating disorders
Autism
co-production

Access to Document

10.1080/10640266.2024.2441540

NimbleyEtal2024EDConductingEthicalCoProducedResearchAccepted author manuscript, 366 KBLicence: Creative Commons: Attribution (CC-BY)

1 Active

Scottish Autism and Eating Disorders Research Collaborations
Gillespie-Smith, K. (Principal Investigator), Duffy, F. (Co-investigator), Kettley, S. (Co-investigator) & Sharpe, H. (Co-investigator)
Medical Research Council
1/08/23 → 31/07/26
Project: Research

1 Chapter
1 Exhibition

Conceptualisations of the body/person in psychology: paradigmatic implications for designing and design research
Kettley, S., 2026, (Accepted/In press) Designing for Bodies: The Somatic Expertise of Design Practice. Kaygan, H. & Nygaard Folkmann, M. (eds.). Bloomsbury
Research output: Chapter in Book/Report/Conference proceeding › Chapter
You're Not Alone
The Eating Disorder and Autism Collaborative (EDAC), 1 Mar 2025
Research output: Non-textual form › Exhibition

Open Access

1 Participation in workshop, seminar, course

Designing for Ecologies of Care
Rahman, S. (Organiser) & Kettley, S. (Organiser)
22 Aug 2025
Activity: Participating in or organising an event types › Participation in workshop, seminar, course

Cite this

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., Nuttall, E., Darling, H., Fidgin, L., Campbell, L., Suratwala, T., ... Eating Disorder and Autism Collaborative Network (EDAC) (2024). Conducting ethical, co-produced research with Autistic individuals with an eating disorder: Best practice guidelines. Eating Disorders: The Journal of Treatment & Prevention (EDJTP), 1-11. Advance online publication. https://doi.org/10.1080/10640266.2024.2441540

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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.",

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author = "Emy Nimbley and Ellen Maloney and Karri Gillespie-Smith and Helen Sharpe and Kyle Buchan and Sarah Kettley and Jessica Bragg and Alison Shepherd and Becky Choat and Joseph Long and Isla Whateley and Ollie Booth and Julie-Anne Baker and Nix Renton and Emily Nuttall and Harriet Darling and Lin Fidgin and Laura Campbell and Tasha Suratwala and Casper Temple and Kayleigh MacDonald and Sammi Carden and Bryanna Lazich and Jess Kerr-Gaffney and Michelle Sader and Gordon Waiter and Kate Tchanturia and Fiona Duffy and \{Eating Disorder and Autism Collaborative Network (EDAC)\}",

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doi = "10.1080/10640266.2024.2441540",

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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, Nuttall, E, Darling, H, Fidgin, L, Campbell, L, Suratwala, T, Temple, C, MacDonald, K, Carden, S, Lazich, B, Kerr-Gaffney, J, Sader, M, Waiter, G, Tchanturia, K, Duffy, F & Eating Disorder and Autism Collaborative Network (EDAC) 2024, 'Conducting ethical, co-produced research with Autistic individuals with an eating disorder: Best practice guidelines', Eating Disorders: The Journal of Treatment & Prevention (EDJTP), pp. 1-11. https://doi.org/10.1080/10640266.2024.2441540

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AU - Maloney, Ellen

AU - Gillespie-Smith, Karri

AU - Sharpe, Helen

AU - Buchan, Kyle

AU - Kettley, Sarah

AU - Bragg, Jessica

AU - Shepherd, Alison

AU - Choat, Becky

AU - Long, Joseph

AU - Whateley, Isla

AU - Booth, Ollie

AU - Baker, Julie-Anne

AU - Renton, Nix

AU - Nuttall, Emily

AU - Darling, Harriet

AU - Fidgin, Lin

AU - Campbell, Laura

AU - Suratwala, Tasha

AU - Temple, Casper

AU - MacDonald, Kayleigh

AU - Carden, Sammi

AU - Lazich, Bryanna

AU - Kerr-Gaffney, Jess

AU - Sader, Michelle

AU - Waiter, Gordon

AU - Tchanturia, Kate

AU - Duffy, Fiona

AU - Eating Disorder and Autism Collaborative Network (EDAC)

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AB - 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.

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KW - co-production

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SN - 1532-530X

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JO - Eating Disorders: The Journal of Treatment & Prevention (EDJTP)

JF - Eating Disorders: The Journal of Treatment & Prevention (EDJTP)

ER -

Conducting ethical, co-produced research with Autistic individuals with an eating disorder: Best practice guidelines

Abstract

Keywords / Materials (for Non-textual outputs)

Access to Document

Fingerprint

Projects

Scottish Autism and Eating Disorders Research Collaborations

Research output

Conceptualisations of the body/person in psychology: paradigmatic implications for designing and design research

You're Not Alone

Activities

Designing for Ecologies of Care

Cite this