Note: This article contains discussion of disordered eating.
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[image: Motel sign advertising "Gluten Free Wifi"]
I was one of those autistic children who got put on a special diet, by parents who thought they were doing what was best for me. Though parents like mine may believe such a controlled diet is for the benefit of their child, my own experience on an autism diet was that it led to permanent harm.
Growing up, I was not allowed to eat a laundry list of seemingly random foods: dairy, sesame seeds, mangoes, peanuts, whole wheat. In order to avoid explaining my autism diagnosis to me, my parents simply told me I was “allergic” to these foods. Because I grew up in a time before dairy-free substitutes were readily available, I vividly remember feeling like I was missing out: While my friends got to enjoy pizza and cake at birthday parties, I got stuck with a turkey sandwich.
Eventually, I realized that when I did eat the foods I was supposedly “allergic” to, nothing happened. Eating pizza and ice cream didn’t make me sick, or change how I acted or felt. And when I realized the only thing stopping me from eating pizza and ice cream was my parents, I began to distrust them. No child should have to experience that. This was also when my unhealthy relationship with food began.
When realized I wasn’t allergic to any foods, I wanted to eat them all. I began to binge-eat at any events where my parents weren’t monitoring me. I would eat a whole pizza at birthday parties, or use my school lunch money to buy as many chocolate chip cookies as I could. As I got older, I would buy food and sneak it back into my room, where I would eat when my parents were sleeping. I felt like I had to keep what I ate a secret. I felt ashamed for eating.
As an adult, I now have full freedom over what I eat, and when. But I still worry that I could lose that control of what food I am allowed, at any time. This leads to periods where I’ll binge-eat for days, then feel ashamed for doing so, then heavily restrict what I eat for the following days. I know that this is unhealthy. I also think a lot of theses negative feelings and behaviors around food could have been avoided had I not been put on an autism diet.
Another tactic often used as a part of “evidence-based” autism treatments and behavioral therapies, and one I also experienced, is encouraging parents to restrict a child’s favorite or staple foods. For example, if an autistic child loves chicken nuggets and will refuse to eat anything else for dinner, a parent may be encouraged to stop feeding their child chicken nuggets altogether and force them to eat something else, or to save chicken nuggets to only be used as a reward for good behavior.
Even if these food restriction methods lead to better behavior from a child, they are still harmful to that child’s relationship with food. Like a certain stim behavior or comfort object, specific foods can be a source of security for autistic people. In addition, difficulties with certain textures or other sensations can make certain foods inedible or even disgusting to us. By forcing children to give up their favorite foods in exchange for foods they may not even be able to stomach, children may develop a love-hate relationship with eating.
My “positive reinforcer” was ice cream. Every time I did something I hated, I was taken for ice cream afterwards, which means I associated pain with ice cream. And now, as an adult, when something goes wrong in my life my first instinct is still to eat something to feel better. This isn’t a healthy way to think about food, and isn’t what we should be teaching autistic children.
Emerging research indicates that many people in the autistic community struggle with eating disorders. The news was saddening, but not surprising. When food restriction is such a common “treatment” for autism, it is almost inevitable that some of us develop disordered eating as adults. There has been no research to explore the link between autism diets and the high rate of co-occurring eating disorders in the autistic community. I think it’s a topic worthy of further investigation.
I am not encouraging parents to take a hands-off approach to what their children eat. Parents should have open conversations with their autistic children about food: The importance of trying new foods (at the child’s own pace), eating unhealthy foods in moderation, and focusing on how your body feels when eating different foods. Parents should also actively involve their kids in choices about what foods to eat, as well as shopping for and cooking the food, to teach them that they have autonomy while also learning the skills for independent living.
Food is an important part of life. Instead of using food as a “positive reinforcer,” or as part of a cure attempt, parents can use food and conversations about food to connect with their autistic children. Maybe my relationship with ice cream, and food in general, could have been different.
A version of this article was previously published at NOS Magazine.