Introducing the Eating Disorders and Autism Collaborative (EDAC)

The BJPsych Bulletin recently published an overview of the new EDAC project, partly funded by the Foundation, outlining the plans of a research team at the University of Edinburgh to bridge the gap between eating disorder and autism research.

What is EDAC’s purpose?

A 2021 report compiled by the eating disorder charity Beat highlighted a ‘vicious cycle of underfunding’ in eating disorder research.

Led by Dr Fiona Duffy and Dr Karri Gillespie-Smith, senior lecturers at the University of Edinburgh, EDAC aims to address this issue and to embed a neurodiversity-affirming culture within eating disorder research.

Dr Gillespie-Smith explains:

“We think there is a need for novel and innovative research to better understand eating disorders in Autistic people. Thanks to funding from the Foundation, we are developing a new network of researchers across the UK, specifically encouraging early career and peer researchers, who will carry out research prioritised and set by Autistic people with eating disorders.”

Fostering collaborative and lived experience-led research

To achieve its goals, EDAC will support collaborations between scientists in eating disorder research. Involving researchers in other fields is vital to enhance our understanding of the wide-ranging factors that can cause eating disorders, from biological to psychological and social causes, which can in turn improve treatments and prevention strategies. The team believes that new interdisciplinary partnerships are necessary to increase capacity in the field and raise its visibility.

The project will also focus on involving people with lived experience. In fact, EDAC aims for all its research activity to be led and co-produced by autistic people with living and lived experience of eating disorders. This unique approach will strengthen insights into what it’s like to be an autistic person with this life-threatening mental illness, what makes some autistic people more vulnerable to eating disorders than others, the mechanisms that underpin this, and potential targets for intervention.

Additionally, EDAC hopes to provide career development and employability skills to the autistic community. Despite the strengths and advantages that people with autism can bring to the workforce, they remain severely underemployed. The project will embed employable skills throughout its workstreams to address this – from peer research and website content creation opportunities, to videoing, interviewing and editing.

EDAC’s workstreams

EDAC comprises of four ‘workstreams’ over two years, all of which aim to provide a strong foundation for developing interdisciplinary research in this field.

Through these workstreams, the project will deliver workshops with researchers, clinicians and individuals with lived experience, use art-based methods to capture the experiences of being autistic with an eating disorder, carry out a series of small studies to test out innovative cross disciplinary approaches, and host think tank events to start integrating research directly into clinical practice and policy.

Including underrepresented communities in eating disorder research

It is vital to apply a neurodivergent lens to eating disorder research, to improve outcomes for the up to 30% of people with eating disorders who display autistic characteristics.

As well as the outputs outlined above, EDAC aims to provide best guidance for the ethical co-production of research in eating disorders and autism, as well as tailored clinical assessment toolkits for specialist eating disorder services.

By focusing on the priorities of autistic and other underrepresented communities, Dr Duffy and Dr Gillespie-Smith hope to drive meaningful change in research culture, promoting more inclusive and translatable work that can improve patient outcomes.

Read the full BJPsych Bulletin article to find out more >>