All of these things matter, but for many Autistic people, there's another challenge that receives far less attention: accessing treatment that works for them.
Today, we're publishing a new report exploring the experiences of Autistic people affected by eating disorders. The findings are clear: too many Autistic people face barriers to getting the support they need, and are expected to fit into services that weren't designed with them in mind. This is despite the fact that Autistic people are around twice as likely to experience an eating disorder.
"It's complex is all we ever heard, but both the eating disorder and the autism are intrinsically linked. However, no one knows how to deal with it."
Our report found that more than half of Autistic people with eating disorders felt treatment hadn’t been adapted to meet their needs. The consequences of this can be devastating: people might wait longer for a diagnosis, their behaviours can be misunderstood, or their treatment might not take their sensory, behavioural or communication needs into account.
Too often, Autistic people are expected to change their behaviour to fit the service, but we need a different approach. People shouldn’t have to hide who they are, cope with overwhelming environments or struggle with communication styles that don’t work for them to access treatment. This isn't about creating separate eating disorder services for Autistic people, it’s about making practical changes that help people feel safe, understood and able to take part in treatment.
This isn't about creating entirely separate eating disorder services. It’s about making practical, achievable changes to help people engage with treatment and recovery.
In our report, Autistic people told us about simple adjustments that can make a big difference. Some services are already putting these ideas into practice, including:
These changes might seem small, but for some Autistic people, they’re the difference between treatment being intolerable and it being a success. When autism-affirming care is given, recovery becomes possible.
One person who shared their experience with us is Bec:
For years, Bec struggled with anorexia. Things only started to change when she received treatment that was adapted to meet her needs. Staff explained clearly what would happen throughout the day, and her therapist changed the way sessions were run to make communication easier. Small environmental changes, such as dimmed lighting, helped reduce feelings of overwhelm. Most importantly, her clinicians took time to understand which behaviours were linked to anorexia, and which were related to autism. Those changes helped Bec engage with treatment and build a lasting recovery.
Bec’s experience raises an important question: if these adjustments can make such a difference, why aren’t they available consistently? If we’re serious about improving eating disorder care, we must recognise that we can’t achieve equality by treating everyone the same way. We need to make sure everyone can access support that’s right for them.
The findings in this report are challenging, but they’re also hopeful.
We know better support is possible because many clinicians and services are already showing what good practice looks like. Across the UK, there are examples of teams changing their approach, listening to autistic people and making practical changes that help treatment feel safer, more accessible and more effective.
We know that change is possible across the wider healthcare system. In Scotland, the National Specification for Eating Disorders recognises the importance of personalised care for people with additional needs, including autism. It makes clear that services should adapt to the person, rather than expecting the person to adapt to the service.
We also know eating disorder services are working under enormous pressure, often with growing demand and limited resources. The vast majority of healthcare professionals come to work every day wanting to provide the very best care possible. The adjustments Autistic people tell us they need are often practical and achievable: clearer communication, more predictable routines, consideration of sensory needs, and environments that feel less overwhelming. These small changes can make a big difference.
When autistic people feel understood, they’re more able to engage with treatment. This means that recovery can be faster and less distressing, which is good for Autistic people, clinicians and services.
Now, we need good practice to become the norm, not the exception.
We should all be asking ourselves a simple question: are we asking Autistic people to adapt to our services, or are we adapting our services to support them?
- Beat's CEO, Vanessa Longley