Experiencing a Sleep-Related Eating Disorder as Someone on the Autism Spectrum

When I was growing up, I learned that people typically have three square meals a day. Breakfast is supposed to be eaten when I first wake up. Lunch should be eaten sometime between 11 a.m. and 12:30 p.m. If I were to get hungry in the afternoon, I was allowed to have a small snack, but just to tide me over until dinner, which wasn’t until around 5 at the earliest. (Except on Thanksgiving, when it all depended on the size of the turkey.) I followed this meal schedule as much as I could.

However, I began to have issues in other areas of my life, such as difficulty focusing in school and just as much trouble falling asleep. My doctors decided to try different medications for me. There were also times I felt extremely depressed. I even began to have panic attacks. Finally, when I was about 15 years old, I was diagnosed as being on the autism spectrum.

I now take a lot of different medications for many different reasons, and have been on these medications for many years, with a few adjustments here and there. Many of these medications come with side effects; the main side effect I deal with is loss of appetite.

Which brings me back to my meal schedule. I no longer eat breakfast, lunch and dinner at the same times I did as a child. Because most of the medication I need to take during the day suppresses my appetite, I don’t often eat breakfast. I might have a very small snack (such as a handful of crackers) around 10 or 11 a.m., but usually I just cannot get myself to eat. Around 2 or 3 p.m., I have a bit more food (maybe half of a sandwich). I finally feel hungry and have the ability to eat by about 6 p.m. I typically eat a full meal, wait about an hour for it to digest, and then have another meal right before I need to take my nighttime medications and go to bed between 8 p.m. and 9 p.m.

But something else unusual happens after I go to bed. I’ve been diagnosed with something called a sleep-related eating disorder. Basically, I will get out of bed, not always fully awake, and I’ll eat even more. This isn’t a typical midnight snack, but happens several times a week, and often multiple times throughout the night. If I don’t eat something, I usually begin to wake up feeling very hungry and then have a difficult time falling back to sleep.

My doctors and I believe that the issue is caused by a combination of medication side effects and some struggles I have with my diet due to being on the autism spectrum. We also agree it’s not worth the stress it would cause to try to address the issue. As long as I am still safe (not leaving the house, not reaching for non-food items, not using the oven or stove etc.), we can simply keep an eye on it and focus on other aspects of my health.

I may have some unusual eating habits, but I feel it’s important to talk about them. Others should know about sleep-related eating disorders. Perhaps sharing my story will bring more awareness.