People often say that an eating disorder is about control and not about weight. They say it is about anxiety, not body image. I don’t know what my eating disorder is about. It’s about so many things and nothing at the same time. I do not have anorexia or bulimia, I have autism.
At the age of 35, I received my autism diagnosis. Finally, my life made sense and I was able to see why I had struggled so much with sensory issues, emotions, and relationships. However, there was one relationship that I had struggled with the most and knowing autism was the reason behind it made me feel relief. That relationship was with food.
Trigger warning: Mentions of eating disordered behavior, self-harm, and suicide.
How autism causes or affects eating disorders, I do not know. But for me, it is a way to cope with a world that scares me. It is a way to keep connected to my body when sensory issues make me want to tear my skin off. Autistic people can become fixated on certain facts, numbers, and patterns. I am fixated on a specific weight and every day begins either happy because I am below it, or miserable and full of anxiety because I am over it. Black-and-white thinking makes food good or bad and dress sizes acceptable or not acceptable.
I’ve always fought with food. As a toddler, I had extreme intolerance to any texture other than completely smooth and this continued throughout childhood. When I did get past my sensory issues with texture, I only tolerated a diet that was so restrictive that I went months eating the same food.
In addition to issues with food, I had, and still have, a tumultuous relationship with my body. I was fixated on my belly when I was seven years old and asked my mother what diet would make it go away. Due to a connective tissue disorder, I developed stretch marks and cellulite in my pre-teens despite being petite and slightly-built. I know now they were caused by my faulty collagen, but back then I was obsessed with getting rid of them. Developing acne at the age of 11 was the final straw that led me to completely despise myself and how I looked.
Being bullied throughout my entire school life was hard enough, but everything that I was bullied for was appearance-related. I was spotty, wore glasses, and had naturally-frizzy hair. So when the bullies started calling me “fat,” despite being tiny, I became fixated on doing anything I could to control my body and how it looked. I believed that people liked me or hated me based on how I looked in a pair of jeans because I was told so by my school bully. Nevertheless, sensory issues often left me unable to wear anything other than the one piece of clothing I disliked.
I was already hiding self-harm, so it was easy to keep my developing eating disorder secret. Calorie counting, hours of exercising, and eventual purging became part of my daily routine. At 18, I was so overwhelmed that I suffered a massive breakdown. I spent months in a psychiatric ward after attempting suicide, and my eating disorder was brought to light. However, treatment only focused on the depression and emotional symptoms. I received no help with my eating disorder, and so my complicated relationship with food continued.
Due to my connective tissue disorder, my digestive system has completely failed. This has led me to be dependent on feeding tubes, and I’m now being fed directly into my bloodstream via a method called TPN (total parenteral nutrition). I no longer have control over how many calories my body receives each day. Chronic pain and severe fatigue prevent me from exercising. I struggle daily with loss of control, but in a weird kind of way, losing my digestive system has been a blessing, because even though I still live with the eating disorder in my mind, I can’t physically act on it. My condition is life-limiting and complex and I’ve started therapy to help me cope with this. My therapist and I will be exploring my eating disorder and autism together and I’m hopeful that it will help me understand how they interact better.
I’m still learning what it means to be autistic and it will take time to understand why my autism causes the difficulties with body image and food. But one thing is for sure: knowing my eating disorder is part of my autism means I can take a step back when I am really struggling and know that it’s OK. My autism diagnosis allows me to take a breath and tell myself that my eating disorder is really my autistic brain obsessing about numbers, patterns, and sensations. Knowing this is helping me to develop a better relationship, not only with food, but with myself.
Carrie Beckwith-Fellows is a 36-year-old freelance writer and blogger from rural Northumberland, UK. She has struggled with an eating disorder since childhood due to autism. Her hobbies include stationery, creative Bible journaling, and playing computer games. She is currently writing two books, and vlogs about living with a life-limiting condition in the remotest village in England. You can watch Carrie’s vlog at RuralTeacake.com and follow her on Facebook.