Autism and eating disorders: bridging the gap between research, lived experience and clinical care

How can eating disorder research and care better meet the needs of Autistic people? And what changes when Autistic people with lived experience help shape the research from the very beginning?

In our August National Scientific Seminar, we shared insights from the Eating Disorders and Autism Collaborative (EDAC), an interdisciplinary research network bringing together expertise across autism and eating disorders.

Central to EDAC’s work is a commitment to meaningful co-production, with Autistic people with lived experience of eating disorders actively helping to lead and direct the research. The aim is to ensure the research being produced is meaningful and has real-world impact.

Looking beyond traditional eating disorder outcomes

One of the key messages from the presentation was that traditional clinical outcomes may not capture the full experience of eating disorder treatment for Autistic people.

Research discussed by EDAC found that while Autistic and non-Autistic people may experience similar improvements in eating disorder symptoms and BMI at the end of treatment, Autistic people and those with higher Autistic traits consistently report poorer experiences of eating disorder treatment. They may also experience longer periods of treatment, be more likely to experience inpatient or prolonged inpatient admission, and have higher levels of psychosocial difficulties.

These findings highlight the importance of looking beyond traditional measures of treatment success and considering the broader experiences of Autistic people receiving eating disorder care.

Setting research priorities with Autistic people

Through an inclusive Photovoice priority-setting project, EDAC worked with Autistic people with lived experience of eating disorders to explore their experiences and identify the questions they wanted future research to address.

Their priorities highlighted the complex relationship between autism, eating disorders and recovery, including sensory and cognitive overwhelm, early experiences, the function an eating disorder may serve, co-occurring conditions and intersectionality, and the importance of community and non-clinical support.

Importantly, Autistic traits were not considered solely as barriers to recovery. Participants identified ways in which they could both present challenges and facilitate recovery. For example, a preference for routine could contribute to eating disorder cycles in some circumstances, while an established and supportive eating routine could also play an important role in recovery.

Translating research into autism-affirming eating disorder care

EDAC is also translating this research into practical changes within eating disorder services.

Examples discussed during the seminar included sensory audits of clinical environments, extending eating disorder assessments to consider Autistic traits and individual needs, introducing appropriate adaptations earlier in treatment, and developing autism-affirming adaptations to eating disorder-focused family therapy.

A key clinical message was that support, and appropriate adaptations do not necessarily require a formal autism diagnosis. The presenters discussed the value of identifying individual needs and introducing adaptations earlier, rather than waiting until traditional approaches have been unsuccessful.

Changing systems as well as treatment

Supporting Autistic people with eating disorders involves more than adapting individual treatment approaches.

The presentation highlighted the need to consider the broader culture of eating disorder services, address silos between autism and eating disorder knowledge and training, support communication across different neurotypes, and move towards individualised, person-centred care.

The presenters also challenged deficit-based approaches to autism in clinical services, highlighting the value of strengths-based approaches and lived-experience expertise in supporting autism-affirming care.

EDAC’s work demonstrates how co-production can extend throughout the research process, from establishing ethical approaches and setting research priorities to developing clinical resources and informing adaptations to care.

Together, this work points towards eating disorder research and care that better recognises Autistic experiences, individual needs and lived experience expertise, while translating research into meaningful changes in clinical practice.

For more information, please visit: https://www.edacresearch.co.uk/