How understanding I’m autistic changed my eating disorder recovery

Topics mentioned: autism, eating problems, OCD, anorexia

About: Rachel shares her experience of OCD, anorexia and autism, and how understanding she's autistic changed her eating disorder recovery journey.

I was age six when I first remember obsessively washing my hands due to obsessive compulsive disorder (OCD). I was prescribed hand cream for my chapped and bleeding hands, but things only got worse. Because my OCD behaviours were only the symptom, never the cause. 

I grew up knowing I was different and believing I was inherently broken because of it. Despite being in and out of mental health services for as long as I can remember, the approach to my treatment was always surface level. I began to internalise my feelings, masking more and more, all while silently crying out for help yet not truly being heard. Finally, my body and brain could not go on. 

You shouldn’t have to get to crisis point to be heard. 

At 15 I was diagnosed with Anorexia Nervosa. My eating disorder (ED) was a way of coping with life in a world not designed for me. I was masking every day in school, not because I wanted to be the same as everyone else and fit in – but because I wanted to be loved. 

I just thought that was the only way I could be. 

One day I had 100% attendance, and the next day there was an empty seat and I never returned – I never said goodbye. 

When I was 15, I found myself in an unfamiliar ward – bright lights, relentless beeping, new people, no certainty. I was terrified.

At first treatment didn’t work for me. I became situational mute and felt imprisoned within my own body and brain – unable to speak.

When I felt there was no way I could survive, in just ten minutes, a stranger – who then became my incredible nurse – saved my life. Through giving me hope, not giving up on me and giving me a reason to stay. 

One reason, that’s all it takes. 

We adapted treatment and did things differently. Through a person-centred, individualised approach I began to build trust and a spark of hope was lit inside of me. 

Then I found out I am autistic! Autism was never the ‘cause’ – it was an explanation: I was living in an environment as an autistic individual that was not designed for me to flourish in. Or even survive. 

Finding out I’m autistic was the turning point for me in my recovery. Not because something changed about me, because I’ve always been autistic. But something changed within me and my attitude towards myself. No longer did I have to recover to get my old life back, I could create a new one. That set me free.

Writing became my lifeline to communicate my internal world - a way of inviting people into the complete and utter darkness I was experiencing and how that truly felt. No longer did I feel synonymous with my eating disorder - like I was a walking talking life-size representation of anorexia (this is how I felt in early treatment). But someone who is autistic and HAS an eating disorder, who one day may even recover from it. 

Creating a new life that met my autistic needs was key to setting myself free from a neurotypical life that was destroying me. It meant I no longer had to be so reliant on anorexia as a coping mechanism for survival - which was in turn destroying me. You will never recover if you return to the very environments that make you sick. 

The work I did with my nurse genuinely changed the whole trajectory of my life – not only did it save me when I was hopeless and saw no future, but it also allowed me to save my own life and continue saving it. 

So that’s why at 17, I wrote my own book: “How to save your own life: a guide to recovering from an eating disorder as an autistic person” – so you can save your own life too! 

There’s so much literature on eating disorder presentation – often through a neurotypical lens – but how does it feel to experience an ED and also be autistic? So often the recovery route is not built for us, and we believe we’re broken because of it. I wanted to change that. 

Now I’ve found my voice I want to use it as a catalyst for change.