The public resources for supporting my eating disorder recovery did not take into account my experiences and needs as an autistic and sensory sensitive person. This needs to change.
Content warning: this article contains content about eating disorders, diet culture, and ableism.
It is now widely known that autism and eating disorders, in particular anorexia nervosa, tend to overlap. But, as someone who has both, I find myself frustrated by the fact that it’s hard to learn more about this unless you delve into dense academic research. So, for this year’s Eating Disorder Awareness Week, I will lay out some of the factors that can make us autistic people vulnerable to eating disorders (ED) by drawing from my experience.
I developed an eating disorder when I was thirteen. I was visiting a friend who had moved far from home, and their life seemed perfect. Meanwhile, I was struggling with loneliness at school and the feeling that I could not get anything right. Everything my friend excelled at, I felt I had no chance of even trying. They didn’t actively do anything to worsen my state of mind, but some other close people in my life said things at the time that exacerbated these thoughts. After that visit to my friend, I decided to engage in certain behaviours that would prove very destructive.
Eating disorders are very misunderstood and associated with stereotypes that can make it very difficult for the people around you to realise that you need help. For example, some tend to think of anorexia as a diet gone wrong, or actually think about it in a positive light, since depriving yourself of certain foods, infuriatingly, can be seen as a good thing in our society. I was never interested in diets, but I wanted to blend in better with other people — I thought a different body would draw friends towards me. That sounds similar to masking, doesn’t it? It could be that some autistic people who develop eating disorders may worry about coming across ‘too different’ to other people and start engaging in restrictive diets as a way to connect with other people or camouflage other interests.
For me, though, it was never an issue of wanting to bond through weight loss or camouflaging my interests. It was more the fact that my environment was very oppressive and the ED became a way to communicate what I didn’t know how to say. I was scared of going to school, even more so that particular year as my only friend had gone on a year-long exchange. Which brings me to my next point: many autistic people don’t like changes to things that make navigating the world around us easier. I had just started secondary school when my friend moved away, which meant that I would be treated in a much more grown-up sort of way when in fact I wasn’t ready. It was around this time I developed an eating disorder.
Since then, through the course of my life, the eating disorder has relapsed whenever big, negative life changes have happened, like when I left university and my entire support system was suddenly unavailable to me. When I found myself unable to go back for a PhD, the life I’d always imagined was no longer possible, and I didn’t know how to cope with that sense of loss.
When I relapsed at this point, my GP suggested that I try day treatment at the local psychiatric hospital, as I didn’t get on with my therapist and my situation was getting worse. My experience of hospital treatment wasn’t good at all, partly because they wouldn’t honour my needs that differed from the norm. I was only allowed three foods on my dislike list (everyone in the treatment program could put a maximum of three foods on this list, unless they had allergies, and were thus exempt from eating them), which meant that I had to put up with whatever else that was not sensory-friendly. It may sound like I was simply being picky, but many autistic brains process sensory discomfort like pain—so day in and day out in treatment, I had to tolerate tortuous textures that were in no way related to the issues that triggered my ED. Whereas most people enjoyed the distraction provided by chatter at mealtimes, for me it was one element of a larger sensory hell that I had to experience everyday. As a day patient in a publicly funded UK hospital eating disorder program, I didn’t have my own quiet place to decompress when the communal rooms were taken and I wasn’t allowed to wear headphones to meals, so I simply had to sit with the discomfort with no support available. If that didn’t result in a shutdown, there would be a meltdown, and rather than coming from a place of compassion, staff would simply ask me why I was acting so angrily. There was a decided lack of understanding, support, and compassion for what my needs were, making the treatment itself almost unbearable.
When I left the hospital, I was lucky enough to start becoming involved in campaigning through an UK autism charity, which helped me finally get out of the post-university rut where I had become depressed due to feeling unstimulated and purposeless, which then triggered my eating disorder relapse. Neurodivergent people thrive on stimulation, but at the same time society rarely sees the good in us, meaning that we are a hugely underemployed demographic. The charity work breathed new life into me, because suddenly I was able to plan into the future and have a bit more certainty about the next few months of my life. I began to eat more intuitively, but not in the way typically peddled online; in my case, it meant more “I will be really busy today, so I have to sustain myself through food”. Many people with eating disorders lose their natural hunger cues, but this uniquely challenging if you weren’t able to identify your body’s needs to begin with, as can be the case for autistic people with interoception challenges that are unrelated to an eating disorder. Having things to do gave me the structure needed for regular mealtimes and meant I ate to sustain myself.
It should come as no surprise that ED services in the UK have become overwhelmed beyond imaginable because people, even neurotypicals, are finding the adjustments to change brought about by COVID-19 very hard. Navigating these changes, as well as the already limited systems meant to support people with eating disorders, is extremely difficult for many people, but are inaccessible and harmful in unique ways for autistic and sensory sensitive people. The systems put in place to support patients with EDs must be redesigned so that autistic people’s needs are integrated within their care plans.
I’m sure that by now you are worrying about how the changes brought about by the pandemic impacted my eating disorder, but in some ways I think external factors converged and things actually got better for me. I had to go back home where my mum would (quite strictly) provide the structure for meals. I found a job I could do from home, too, where my being autistic was an advantage. And while it is unfortunate that I had to resort to accessing private options, I ultimately did find a therapist and psychiatrist that honoured my autistic needs in relation to treating my eating disorder. I know that my progress hasn’t been the quickest, but I have made changes in my life that I never thought possible, and that is in part because therapy allows me to talk through more than just the eating disorder in and of itself, and get to some of the root causes. An eating disorder in an autistic person is built upon the foundation of many complex factors—insecurities, fears, ableist nonsense that has been drilled into us for years, but the services that saw me before never acknowledged that. The fact that this approach is missing from public and more accessible forms of treatment is detrimental, as this approach has allowed me to really get to the bottom of this ugly, pervasive disorder.
In my current care, being able to talk about my special interests and tie them into other areas of my life has been an enormous privilege, as someone who has been bullied because of them. They may not be ‘relevant’ to the eating disorder specifically, but sometimes being listened to with care and attention is all it takes to make us feel motivated to get better.
In summary, I wouldn’t say the connection between eating disorders and autism is merely coincidental nor a matter of sharing similar genes. There are many factors part of the autistic experience in our world that can trigger or worsen an eating disorder: loneliness, the need to mask, hopelessness, difficulty around change, sensory overwhelm, and burnout. Identifying these factors is a massive first step forward, but receiving the right support is rarely what happens next, not through fault of our own, but because society at large does not try to see things from our perspective. Although I’d love it if everyone received extensive expert-training in understanding the unique experiences of autistic people with eating disorders and ways to support us, all it takes to start is a little compassion. 🌟