What It’s Like to Have Anorexia and Autism

Even though Sharon DaVanport was so underweight at 17 that she was diagnosed with anorexia, the label never made sense to her. She wasn’t obsessed with staying skinny or dieting — rather, she found that many types of food caused nausea or other forms of sensory discomfort. But when she tried to explain this to her doctor, she was told she was “in denial” about her real problems. Only years later, when she received another diagnosis, did she begin to make sense of her experience. DaVanport, now 50, a mother of four, and president of the Autism Women’s Network, has the type of autism formerly known as Asperger Syndrome.

Researchers have discovered a number of surprising connections between autism and anorexia, which run in the same families and share many similar symptoms. Some experts even suspect that autism is sometimes misdiagnosed as anorexia in girls. Girls with autistic traits may restrict their eating because of a desire for order or routine, or because of sensory discomfort with food, rather than because of fears over weight gain. But a doctor faced with an underweight adolescent patient who doesn’t eat enough will be more likely to diagnose anorexia, which is stereotypically female, than autism, which has a higher incidence in males.

DaVanport suspects that this may have happened in her case. Science of Us spoke with her about her conditions and how gender expectations may have influenced her diagnoses.

How did you get diagnosed with anorexia?
I was in the hospital for a surgical procedure. My doctor referred a specialist and nutritionist to speak with me about anorexia. I was shocked, as everything I understood at that time about anorexia had to do with people who were making purposeful attempts to not eat in order to control their weight.

I knew this was not how I fit into the equation, as I had sensory issues that caused me to be underweight like sensitivity to food textures and odors. It didn’t seem to help when I shared my reasons with the specialist, as they considered my explanation to be a denial of my real reasons for not eating enough. 

How did you find out you had autism?
I was diagnosed eight years ago, at age 42, when my son’s family therapist asked me if I had ever considered the possibility I might be on the spectrum.

I didn’t take it too seriously at first. After a few months of serious contemplation — looking back on my life and beginning to make sense of my sensory challenges, as well as the way I communicate — I scheduled an assessment and I was diagnosed.

Why do you think your anorexia is related to your autism?
I’ve never talked to anyone — until now — about being told I was anorexic when I was 17, because I had a hard time believing I fit the standard profile. Now that I am diagnosed on the autistic spectrum, I can see why. Looking back, it’s easy to see that my diet restrictions were not about weight control.

When I was a kid, I was expected to eat what was served during mealtimes, no questions asked, and if I didn’t eat the food that was prepared, then I didn’t eat. This had an impact on my weight. 

How did sensory issues affect your eating?
I am highly reactive to food textures as well as odors. What comes off as a mild smell to someone else will be so overwhelming to me that I gag. I have the same response and gag reflex to various textures of food. I recall a time when I was 10 years old and I tried explaining to my mother that certain foods made me gag, or that the smell was so overwhelming it made me sick, but I was unsuccessful at communicating how serious my sensory issues were.

I also recall making an attempt to explain the pain I felt from specific textures: I commented to my mother that peas tickled my teeth to the point it caused pain. My mother chuckled and replied that it was impossible for my teeth to tickle. The sensation I was trying to describe was the same feeling I had previously experienced when someone tickled me to the point it hurt. That was the last time I remember trying to explain my sensory challenges with food. 

How did these challenges affect your self-image?
I was extremely thin during my youth, especially as a teen, and people constantly asked me if I was anorexic. I was sensitive to how thin I was and I developed a lot of shame connected to my physical appearance. I believe if I had been properly diagnosed as autistic, then the food aversions due to sensory challenges would have been recognized.

We know that autism is underdiagnosed in girls. Why do you think this is and what can you say about this based on your own experience?
I believe that much of it has to do with societal expectations of gender and how those expectations mold perception and the diagnostic criteria. When I was a child, autism was not understood as it is today. 

Why else might autistic girls be prone to anorexia or to becoming really thin?
Sensory challenges involving taste, smell, and texture of food can impact swallowing. Also, special interests [with obsessional components] might be centered on exercise. 

How are you with food now?
I’ve come a long way in understanding my sensory challenges and how these issues impact my appetite. Having this knowledge has enabled me to better accommodate my needs surrounding food. I finally enjoy going out to eat, grocery shopping, and cooking, whereas these were activities I used to dread.

This interview has been lightly edited.