A Carer’s Perspective on Advocacy, Autism, and Eating Disorder Care

We have recently published two studies exploring how Autistic and ADHD adults with binge- or purge-type eating disorders understand the ways their Neurodivergence influences their eating difficulties. You can read these papers here (bulimia-focused) and here (binge-eating focused). We have also written a separate blog post focusing on the support needs of this group.

Together with existing research on the links between Autism and anorexia nervosa (see review here), these studies help us better understand how Autism and ADHD can influence how eating disorders develop and present.

In our two studies, we interviewed 26 adults with living or lived experience of bulimia nervosa, binge eating disorder, or other similar eating disorders, or who self-reported binge eating.

Many participants told us that they found it difficult to fully understand how their Neurodivergence might be affecting their eating disorder. Despite this, they shared valuable insights into how aspects of their Autism or ADHD influenced their eating behaviours.

From these lived experiences, we identified several ways that Neurodivergent traits may exacerbate or shape eating disorder behaviours. We hope these findings can help improve understanding among Neurodivergent people with eating disorders, as well as those supporting them.

Participants described how ADHD traits such as emotional overwhelm, boredom or under-stimulation, sensation-seeking and impulsivity could contribute to eating disorder behaviours, particularly binge eating. ADHD participants also described avoiding certain food textures or flavours, missing hunger or thirst cues when hyper-focused, and skipping meals as a result.

Autistic participants, both in our studies and in previous research, described similar experiences. These included avoiding certain textures or flavours, difficulty noticing hunger or fullness, and a tendency to develop strict rules and routines around food. These traits could contribute to restrictive or under-eating. Some Autistic participants also described difficulties identifying or communicating emotions, which could lead to restrictive eating to numb feelings, bingeing for comfort, or both as a form of distraction.

Both ADHD and Autistic participants highlighted how discrimination, lack of social acceptance, and insufficient accommodations can negatively affect self-esteem and sense of identity — especially when individuals are unaware of their own Neurodivergence or did not yet have a diagnosis. For some, eating disorder behaviours developed as a way of coping, seeking belonging, or creating a sense of identity.

If you would like to try foods you have avoided, take some time to plan first. Think about:

• What help you would like, and who can help.
• Your personal reasons for wanting to eat a wider range of foods. For most people it is a mixture, and it can help focus your efforts if you can be clear.
• Which foods you want to try first, which you might try later, and which you don't want to try for now.

We hope this overview has been helpful if you are, or care for, a Neurodivergent person with an eating disorder. Our two studies explore these topics in more detail and include quotes from participants, which you can read here (bulimia-focused) and here (binge-eating focused). The papers also discuss the support needs of this group, which are summarised in our other blog post here. For more information and resources, please visit the PEACE Pathway website.

Neurodivergence is one part of the picture. By listening to lived experience, working alongside carers, and adapting the way we communicate, we can help more people feel understood in eating disorder care — and supported towards recovery in a way that works for them.