Our new report, "Not Designed For Me: Transforming Eating Disorder Support For Autistic People” shares the experiences of hundreds of Autistic people with eating disorders, along with their families and friends.
Autistic people are twice as likely to have an eating disorder as people who are not Autistic. More people are now aware of the link between autism and eating disorders, but many Autistic people still aren’t being given the understanding and support they need.
We found that autism often isn’t recognised early enough in people with eating disorders. People's needs are misunderstood, and many aren’t getting the adjustments they need. Access to support is confusing and difficult. Some people already knew they were Autistic and this meant they struggled to have their eating disorder recognised and treated.
Many people told us it was hard to get help from different services, and that they were often passed from one service to another. More than half of the Autistic people who took part in our survey said their treatment was not changed to meet their needs.
When care doesn’t meet Autistic people's needs, it can cause serious harm and affect many parts of their lives - like relationships, education, work, and wellbeing. Recovery can take longer and people may become unwell again after treatment.
It can also lead to:
Carers told us that the healthcare system was often difficult to access and understand. Many neurodivergent families felt blamed for the challenges they were facing, and only 39% of carers said they received support for themselves.
The report also looks at research, new ideas, examples of good practice, and the laws and guidelines that affect autistic people with eating disorders and those who support them. It builds on existing work, including the PEACE pathway.
PEACE has led the way on providing information and resources on what autism-affirming care should look like for people with eating disorders, carers, and healthcare professionals. The report also includes contributions from the Eating Disorders and Autism Collaborative (EDAC), which works to bring together autism and eating disorder research.
A key message from our work is that eating disorder treatment works better when it is adapted to meet the needs of Autistic people. When people receive this kind of support, they’re more likely to feel understood, listened to, and respected.
The report shows that change is possible. There are already examples of policies and services that are helping to improve support. However, these changes need to be put into practice more widely. There is also an urgent need for better research, improved professional understanding, and more involvement from Autistic people and their families in designing services.
Based on this evidence, the report makes several recommendations. These focus on:
The report includes practical examples that services can use to improve support. Over the coming months, we’ll share our findings with the people and organisations who can help make these improvements happen. We’ll also focus on neurodivergence more broadly during Eating Disorders Awareness Week 2027.
We understand that reading some of the experiences in the report may be difficult for Autistic people, families, and friends. If you or someone you care about is struggling to get treatment, Appendix 7 of the report includes information about advocating for yourself. Find out more about autism and eating disorders.