Posted October 19th 2026
My experience of shaping eating disorder policy: John’s story
About me
Hi, my name is John Duddy, and I am part of the ARFID Connect panel here at the National Centre for Mental Health (NCMH).
John is a member of the Avoidant Restrictive Food Intake Disorder (ARFID) study lived experience panel, called ARFID Connect.
About the report
I was involved in a recent report by Beat Eating Disorders charity, launched in Westminster Palace. The report highlights the experiences of autistic people with eating disorders and how current services often fail to meet their needs.
“Not Designed for Me – Transforming eating disorder support for Autistic people” was written by Eleanor Speakman and Umairah Malik from Beat. Clinicians, researchers, policy experts and people with lived experience also contributed to the report – including me and other experts from the ARFID study here at the National Centre for Mental Health.
How I got involved
I have to thank my partner who recommended that I sign up to Beat’s mailing list. Since then, I have been involved in many opportunities where I have been able to serve as an expert by experience on a variety of eating disorder projects – including the ARFID study at NCMH!
When I heard about the opportunity to contribute to Beat’s new report on eating disorders and autism, I felt that I had some experience that could be useful.
Contributing to the report
First, we were asked to review the main research findings and recommendations on the experiences of autistic people with eating disorders and their families.
This involved:
- discussing how these findings related to our experiences
- whether we thought anything needed changing
- what we felt the impact of the recommendations might be
“It was very fulfilling to help shape guidance on how treatment should be provided, and there’s a sense of satisfaction in the idea that it could help people have a better experience when seeking help.”
After this, we reviewed the draft of the report.
This involved:
- reviewing the structure
- assisting in selection of quotes to use
- helping define the title of the report
The second phase was definitely more work than the first, but I don’t think I needed to spend more than a few hours total on the whole process!
What were the main findings of the report?
Many people described experiences of being misunderstood, misdiagnosed, or labelled as “difficult” when autism-related needs were not recognised. Around 56% of autistic respondents reported that their eating disorder treatment was not adapted because of their autism.
Examples of autism-affirming care, such as sensory adaptations, communication adjustments, and personalised treatment approaches, were associated with better treatment experiences and outcomes.
From a carer’s perspective, only 39% reported receiving support for themselves.
Recommendations include earlier identification, autism-affirming care, joined-up services, staff training, and investment in research and data collection.
However, as someone with lived experience of an eating disorder, I’d say that even if the recommendations are implemented, we’ll still have issues to tackle related to access to care that go beyond the recommendations made.
“Until knowledge and understanding of autism and eating disorders becomes common place, we’ll still see folks hesitant to seek care based on attitudes they have experienced or fear they will experience.”
My key takeaways
If I would want the public to take anything away from this report, I think it is something that can apply more widely than just the scope of the report itself.
Being neurodivergent is hard, and that is a difficulty which is applied on top of whatever other challenges that an individual or society faces.
Things that help accommodate for neurodivergence are about restoring equality by changing equity, which is to say: giving these folks a fairer chance when the world and the systems it uses are so often “Not Designed for Me”.
Dr Sam Chawner, ARFID study lead and report author and reviewer, said:
“This report highlights that autistic people with eating disorders are too often navigating services that were not designed with their needs in mind, even though the evidence is clear that autism and eating disorders frequently overlap, yet recognition and support remain inconsistent.
“It provides a strong evidence base and practical examples of good practice that show meaningful change is achievable. The challenge is ensuring these approaches become standard across services, rather than depending on their postcode or clinician.”
Thank you to John for sharing his experiences and his continued worth with the ARFID Connect group.
Find out more
- Read the report
- Get updates on ARFID research here at NCMH
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