New research from the University of Aberdeen has identified a promising strategy to support eating disorder recovery for Autistic people.
In the first study of its kind, researchers from the University of Aberdeen and the University of Edinburgh worked with Autistic adults who had received treatment for eating disorders. They reported that personalised, Autism‑affirming peer support, where people with shared lived experience support one another, would be a more effective part of recovery than currently used approaches which are primarily designed for neurotypical people.
Eating disorders affect Autistic people at significantly higher rates, with around 27% experiencing symptoms compared with 3% of women and 0.4% of men in the general population.
Autistic people often report poorer treatment experiences. The authors suggest that this could be because existing therapies rarely reflect the different ways eating disorders develop and are maintained in neurodivergent people, such as sensory differences around food, rigid routines, or using food and exercise to manage anxiety.
The study, conducted through the Eating Disorders and Autism Collaborative (EDAC), consulted 25 Autistic adults about the potential benefits and concerns of peer support. Those involved described peer support as highly valuable for validation, connection and building a positive Autistic identity.
One of the individuals involved in the study said peer support was helpful… “to feel a sense of solidarity amongst peers with similar experiences, to share and listen to others about my and their experience and feel heard and understood and to connect when much of life may have been isolating”.
Another added: “The main thing I want is to connect with people who can relate to the two most life-defining aspects of me - my eating disorder and my Autism. I often feel alone in my experiences and struggle to feel understood, so coming together with people who had a much greater chance of empathising with me would be life changing.”
Dr Michelle Sader, Open Research Officer at the University of Aberdeen and lead author, said: “Many Autistic individuals experience trauma and isolation stemming from being misunderstood and marginalised, as well as being labelled as resistant to care due to their Autistic characteristics.
“However, our study showed that peer support was considered essential, enabling a focus on the unique experiences associated with being Autistic and having an eating disorder. “With the help of those taking part in the research, we further found that use of peer support to reflect on these experiences with an autism-affirming framing has significant potential to improve individuals’ confidence and self-validation as well as positively shape the eating disorder recovery process.”
The research team are predominantly Autistic and have lived experience of peer support. They hope the findings will encourage the development of more Autism‑affirming approaches within clinical settings.
Co‑author and lived‑experience collaborator Nicola Llowarch said: “I hope the message comes across that peer support was something that Autistic people felt strongly had potential to be beneficial in supporting recovery from an eating disorder. I really hope that one day peer support may become a reality within clinical settings.”
This research was funded through the Eating Disorder and Autism Collaborative (EDAC), jointly supported by UK Research and Innovation (MRC, ESRC, AHRC), the National Institute for Health and Care Research (NIHR) and the Medical Research Foundation (MRF) as part of the New Collaborations to Support Eating Disorders Research programme
The study was published in the journal, Eating Disorders.