Introducing the Eating Disorders and Autism Collaborative (EDAC)
A project working to bridge the gap between eating disorder and autism research.
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Eating disorders and autism - supporting a new era of collaborative research
Eating disorders often co-exist alongside other mental health conditions and neurodevelopmental considerations, including autism. For instance, 20-40% of people with anorexia nervosa have also been found to be Autistic [1] , and higher levels of autistic traits have similarly been reported in bulimia nervosa, binge eating disorder, and avoidant restrictive food intake disorder (ARFID) [2].
To address the need for new research focusing on eating disorders in Autistic people, Foundation-funded Dr Fiona Duffy and Dr Karri Gillespie-Smith are leading the ‘Eating Disorders and Autism Collaborative’ (EDAC) project.
To improve outcomes for Autistic people with eating disorders, it is imperative that we actively include Autistic people in studies. This will ensure the meaningful translation of research into practice.Dr Fiona Duffy and Dr Karri Gillespie-Smith
Published in Eating Disorders: The Journal of Treatment & Prevention, Dr Fiona Duffy and Dr Karri Gillespie-Smith’s recent paper reports on EDAC’s best practice guidelines for autism and eating disorder research. These have been co-produced across a series of workshops bringing together patients with lived experience, researchers, clinicians, and carers, to guide more impactful research in this field.
Dr Duffy and Dr Gillespie-Smith comment, “To improve outcomes for Autistic people with eating disorders, it is imperative that we actively include Autistic people in studies. This will ensure the meaningful translation of research into practice. EDAC’s best practice guidelines are intended to support this.”
Treating Autistic people with eating disorders
Previously, alongside a wider team, the researchers investigated the outcomes of eating disorder treatments through a systematic review. They found that Autistic individuals with eating disorders were at a higher risk of experiencing more frequent and prolonged inpatient admissions, and generally had poorer experiences with eating disorder services.
These findings highlight the need for tailored interventions adapted to neurodivergent needs. However, there remains a limited understanding of why Autistic people have such different outcomes, or how best to adapt treatments for people with high Autistic traits. One key reason for this could be the absence of lived experience perspectives in many eating disorder and autism studies to date.
Centring patients with lived experience
To strengthen clinicians’ understanding of how eating disorder treatments affect Autistic individuals, Dr Duffy and Dr Gillespie-Smith have been leading the EDAC project. This initiative seeks to bridge the gap between eating disorders and autism research, by promoting research collaborations and emphasising the need for co-produced studies.
In the eating disorder field, it is vital to place lived experience at the forefront of research – this is where co-produced studies play a key role. By incorporating these perspectives, co-produced research has the potential to produce more impactful findings that can inform clinical practice and drive tangible improvements in patient care.
Through EDAC, Dr Duffy and Dr Gillespie-Smith are prioritising interdisciplinary, co-produced research that is guided and led by Autistic individuals with eating disorders.
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Recently, the EDAC team facilitated five workshops with 30 Autistic people with lived or living experience of an eating disorder, researchers, clinicians and other key stakeholders. Ideas for the guidelines were generated iteratively and finalised by the last workshop.
Importantly, the sessions shed light on an overarching need for more accessible, autism-affirming research. In recent decades, autism research has undergone a socio-cultural shift towards advocating for Autistic identity. Similarly, eating disorder research must also prioritise studies that are supported and led by Autistic individuals, to ensure findings more accurately reflect the entire eating disorder community.
Dr Duffy and Dr Gillespie-Smith add, “We would hope that the eating disorder community will actively use these guidelines when conducting research with Autistic individuals to make sure lived experience voices are central to the research process - supporting meaningful research that can have an impact on people’s lives.”
By fostering a trusted, shared and ethical relationship with patients and other partners, the EDAC guidelines could mark a starting point for a new era of eating disorder and autism research.
These guidelines will pave the way for future studies that can be more effectively translated into real-life clinical scenarios, making eating disorder treatments more adaptable to neurodivergent needs.
Read the full paper here: https://doi.org/10.1080/10640266.2024.2441540
