When I first entered treatment for an eating disorder some 20+ years ago, autism wasn’t something anyone considered. This realisation only came in the last couple of years, when a diagnosis of a close relative forced our family, for the better, to educate ourselves and learn new ways of understanding our individual needs and differences.
As is common in people with anorexia, my eating habits were highly restrictive and repetitive. For example, going out for lunch with family or friends was incredibly difficult because I would have to eat something different (and often larger) than I would have eaten at home. If there was a change in my usual timings, such as a mid-afternoon lunch that bridged two of my usual mealtimes, last-minute changes to the venue, or, even worse, no confirmed plan at all, my anxiety would have spiraled. I would have declined the invitation and stayed at home.
At any one time, I had a limited capacity for change. Food, unfortunately, became one of the things I grew more obsessive about and less flexible with. The more anxious I felt, the less flexible, and more repetitive and restrictive I became. What I also didn’t appreciate at the time was how many other factors contributed to that overwhelming anxiety: bright lights, busy and noisy places, the constant effort of trying to fit in socially with peers, communication barriers, and the emotional exhaustion of hiding my confusion and discomfort. In hindsight, these seem so obvious. At the time, they felt inexplicable and shameful. I have also recognised that my need for restriction and routine showed up in more ways than just food — such as limiting how much time I spent with people, how much I spoke, how often I left the house, and maintaining small repetitive routines like the clothes I wore, the films I watched, and the music I listened to, to name just a few. My insistence on routine was about trying to lessen the overwhelm.
With this new understanding, I can now see why seeking treatment for my eating disorder and why certain parts of treatment felt impossible. If I’d known about autism, I might have been able to reframe my difficulty with change: not as evidence of failure (or believing I was inherently different and untreatable), but as something I find disruptive and upsetting. I also wish I’d known that not all recovery tools work for everyone (when the first few attempts at therapy failed), and that developing a trusting relationship with my therapist would take a long time. Perhaps the hardest part of therapy was learning to recognise, understand, and express my emotions to another person, all of which felt very alien. I needed a lot of support, guidance, time, and alternative practices before I began to make progress.
Autism has reframed how I understand almost everything about myself. The more I educated myself, the more I began to pull together a much bigger picture of what had been going on and, crucially, to understand what had contributed to relapses in my eating disorder. I was no longer looking at isolated behaviours, but at an entire pattern that had gone unnoticed for decades.
Whilst autism knowledge does not erase the reality of my eating disorder, it reshapes the story. For me, disordered eating emerged as a coping mechanism for emotional overload, a way to create predictability, and maintain a sense of control in an overwhelming world. Recovery, therefore, required more than challenging distorted thoughts about food and the body; it required understanding the underlying autistic needs and creating compassionate environments where those needs can be safely met.
If there is one thing I hope anyone reading this reflection, and others like mine, it is that awareness of autism is not an add-on, it is fundamental to equitable care. Recognising autism can change everything: the goals of treatment, the pace of progress, the language of therapy, and what recovery looks like long term.