Autism and Eating Disorders: Navigating ED on the Spectrum
I was 20 years old when I found out I was Autistic. At that point, I was already four years into a battle with an eating disorder I didn’t know I had.
My food issues started early in my life. Like many Autistics, I had severe aversions to certain smells, textures, and flavors. My hunger signals didn’t work well, and I was also intolerant to the feeling of being hungry. To this day, I do not feel the gradual buildup of hunger; it is like an on/off switch for me. Once that switch is on, it is too late, and I lose the ability to focus. Growing up, I would experience Autistic meltdowns when I was hungry.
I had what you might know as “The Perfect Storm”. Autistic traits like black and white thinking, rigidity, and my ability to hyper focus on a special interest, combined with rapid weight gain as child and years of being bullied and excluded for my body size, all contributed to the development of eating disorders.
My Eating Disorder Begins
It started my Sophomore year in high school. I went off medication that was giving me horrible side effects; a medication that I should never have been prescribed in the first place had Autistic females been better understood. Within a month of going off the medication, I rapidly lost weight. This boosted my confidence and I started paying more attention to my food choices. While this sequence of events may have been harmless for some, my new Autistic special interest had become weight loss. If you are unfamiliar with Autistic special interests, it is a subject we devote most of our energy and free time towards. We can have one, or many, and they can last for weeks, years, or a lifetime. In females, these interests are often missed since they tend to be things that fit in to everyday life like dolls, animals, art, etc. as opposed to more obvious obsessions like the stereotypical trains or cars.
Now that I had my new special interest, I spent countless hours researching the “healthiest” ways of eating. I began dieting Junior year, and by Senior year had developed extreme body dysmorphia. My parents didn’t notice my new habits, as I had always been a “picky eater” and they assumed my new body size was from going off the medication. In my mind, I was living a “healthier” life. I never skipped a meal and was eating vegetables, so why would I think I had a problem?
If Only Someone Had Asked
In college I joined fitness classes, watched the food channel incessantly in an attempt to learn how to cook, and got a part time job at a grocery store. I was a chemistry major and even joined food chemistry clubs. My whole life revolved around food. I knew something wasn’t right when I started experiencing headaches, muscle weakness, and episodes of vision loss. Since my intent was being healthy, I was very proactive about these issues, and requested numerous doctor visits. My doctors chalked all my symptoms up to migraines, which was unrelated to my eating disorders. After one of my fainting spells, I even had to wear a heart rate monitor for a week; I don’t remember the exact results. It saddens me nobody ever considered I had an eating disorder, and not a single doctor asked more details about my diet. Once I told them I ate three healthy meals a day, the conversation would end. There I was seeking help; I knew something wasn’t right. I had no idea I was causing my own health problems. I wasn’t lying or hiding anything; if only someone had asked!
What do you mean I am Autistic?
Halfway through college, I found out I was Autistic. At first I didn’t understand what that meant, and I was angry for not knowing sooner. After the anger subsided, I started researching it, and it explained so much. No wonder I was so socially awkward! However, I was also in disbelief. I had just found out the world as I knew it was completely different, and that most people did not experience life or have the same struggles I did. I felt very alone.
I started drinking in excess multiple times a week, more than the typical college partying. As I noticed my body size begin to fluctuate, I would also manipulate food and alcohol consumption. However eventually, I drank in excess to the point where I no longer cared about my body. Periodically I would stop consuming alcohol for extended periods to prove to myself I didn’t have an alcohol problem, but we all know it was only a cover up for my eating disorder. I fell in love with a heavy drinker who was unaccepting of my Autistic diagnosis which only exacerbated the problem. The relationship completely destroyed what was left of my self-esteem.
A Fresh Start? Not quite
Finally, after 4 difficult years, I ended that relationship. I was newly single, in a larger body, and had zero self-esteem. You probably guessed it, but I did the only think I knew would help; I jumped back into what I thought was a healthy lifestyle. I started dieting and exercising and soon enough, I was back to a smaller body. At this point, my Autistic special interest transformed into cooking and overall health. I learned my habits could contribute to health conditions, so I became obsessed with eating perfectly. I was no longer concerned with my body size; it was about my overall health. I constantly researched how different foods worked in the body and what was required to reach optimum health levels. I was a chemist, so I had access to a surplus of scientific journals and resources. Little did I know, my eating disorder had taken on a new form.
My Aha Moment
At the age of 25, I sought out a therapist who specialized in Autism. We worked through the damage my college relationship had caused like my low self-esteem, and also what it meant for me to be Autistic. She taught me coping mechanisms and I finally felt understood. We developed an eating plan that would reduce the frequency of my Autistic meltdowns, and she helped me understand how to have a healthy relationship with food. Little did I know, I was also treating my eating disorder. In part of my quest to learn, I stumbled upon research on how common eating disorders were in Autistics. I discussed it with my therapist.
At the age of 26, almost ten years after my struggle started, everything clicked. I had an eating disorder. I of course, started reading everything there was about the long-term health effects of eating disorders. It became a new special interest. I decided I would not let that be a part of my life anymore. I had also been working with a doctor during that time to address food sensitivities. I learned the practice of mindfulness techniques, which I now know is a part of intuitive eating, a common technique used in treating eating disorders.
My Autistic mind rationalized myself to the path of recovery. To anyone unfamiliar with how the Autistic mind works, you might think my path to recovery doesn’t seem possible. I assure you it is, as my brain runs on a different operating system
I continued to work with that therapist on and off for years. However, as proud as I was of being Autistic, I was equally shameful I was in recovery of an eating disorder. I told everyone I was Autistic, and I never talked about my eating disorder again.
Too good to be true?
Fast forward 5 years, and I was truly happy. I had friends, a great boyfriend, a job as a chemist in a company where I was friends with many of my co-workers, and a great relationship with food. I had turned my issues with food into one of my greatest passions: cooking. I loved throwing dinner parties and cooking fancy six course meals for friends. You know, the kind with the cloth napkins. I loved experiencing food and how it was incorporated into cultural traditions. I started traveling the world.
Then we broke up… My world crumbled. I had lost my best friend, my travel partner, my fellow foodie. Then four days before Christmas, I was laid off from my job of six years due to a company restructure. My life had just been turned upside down. Unhealthy habits started creeping up. It only lasted a short time before I discovered a phone-in eating disorder support group. I started attending weekly meetings and was able to pull myself out of that rut. I caught my rational Autistic mind stopping me from regressing back into an eating disorder, when I remembered about all the health issues I had worked so hard to heal. I did a deep dive into genetics and eating disorders to keep me in recovery. I took a job in genetics.
And Then There is Now
A year later, I found The Alliance. You better believe I wish I had found them years before when I truly needed their support groups. They showed me I don’t have to feel ashamed I struggled with eating disorders. As much as my Autistic mind wants to reject it, the path to recovery is not black and white. I can be just as proud of being in recovery from an eating disorder as I am to be Autistic!