I was 11 when I was officially diagnosed as on the autistic spectrum. I’d been assuming I had Asperger’s syndrome since I was 7 because my mom told me I had it, even though I found out years later that the psychiatrist said I didn’t have it, though he said I was “somewhere on the spectrum”. I had always known I was different and it was good to think I was not the only one like me, even if I didn’t know any others. Anyway, somewhere around the time I was 11 my parents checked out a book from the library called “Freaks, Geeks, and Asperger Syndrome” by Luke Jackson. He wrote the book when he was 13. I had a memory from childhood where my dad went to another church parish to visit while traveling for work, and told us about it when he came home. He mentioned there were several autistic kids, and at first I was confused and thought he said “artistic” and he explained what autistic meant. I said “that sounds like me” and gave evidence to support my claim. My mom said “you are not autistic, believe me”. I know the kids at the other church were older and more severely disabled, and my parents didn’t know how diverse autistic people could be. Anyhow, I only mention that because the book I read when I was 11 (and kept checking out from the library myself for years afterward) was the first time I learned that Asperger’s syndrome was a type of autism. I don’t use that label anymore because it is an outdated diagnosis and insistence on using that word instead of autism is tied to some problematic ableist stuff.
Anyway, the reason I bring up that book is because the person who wrote it said his life was changed by the gluten free casein free (GFCF) diet. There’s a theory that autistic people have a leaky gut and the protein in wheat and milk products is not digested and turns into opiates in a person with a leaky gut, and that is responsible for some autistic symptoms. I now know that there was someone who found opiates in the urine of people with autism and schizophrenia several decades ago, but no other scientist has been able to replicate his research. So for a while my mom was trying to convince me to try the GFCF diet, and it might help me, but I didn’t want to because all my favorite foods had cheese in them. Then, months later, when she had given up on trying to persuade me, I decided to try it myself. I thought maybe the fact that my head felt fuzzy sometimes was from gluten and casein. Looking back, it was probably the medication I was on for anxiety that made me feel that way. Also, I do not consume gluten or cow’s milk now because gluten gives me stomach pain and I am allergic to milk and it makes my asthma much worse. But I am still autistic.
Anyway, the first weekend I was off gluten and dairy my mom pointed out that I was being more social and not hiding in the corner at church. Usually after church there is a potluck meal, and since it could get noisy I would usually hide under a table and listen to Mozart with headphones and a portable CD player I brought with me in my bag, and rock back and forth. Probably the real reason I was being more social is because there is another woman at the church who has to eat gluten free and is allergic to milk, and I have always enjoyed her company, and I was talking to her about gluten free food because that was something I was interested in talking about. But the “you’re being more social” comment wound up turning into an obsession for me. Over the weeks I noticed that I always felt more social before eating and got tired and introverted after eating. This made me think, maybe something else in my diet was causing a problem and if I just figured out what it was and stopped eating that particular food then I would be able to eat a meal without getting tired and introverted. It took me years to realize that it is normal to have less mental energy after eating because blood is going to your digestive system instead of to your brain. I was already pathologizing myself and blaming everything different about my brain on food.
I became uncomfortable with my weight and started trying to eat less. I thought I was a glutton. Really, I was on a medication notorious for causing weight gain. My doctor just assumed I was not getting that side effect because I was still technically in a healthy weight range. Then I was taken off the medication, and since in my own head I believed I couldn’t eat the amount of food I naturally wanted to eat, I lost a lot of weight after getting off the medication. I became underweight and went to see a nutritionist. She told me how much food I needed to eat, and something clicked in my brain. Oh, I need to eat more. I can do that. I just have to stop trying to eat less. I thought everything was going to be okay now. Little did I know it wasn’t.
Around that time I had the habit of eating little else than bread rolls I made myself that were little more than flour and water, refried beans, almond butter, rice milk and fruit. I would also nibble on salad and alfalfa sprouts. I would eat meat if it were served for dinner, but never chose to eat it if I was on my own for a meal. I was also taking enzymes which were meant to help autistic people digest problem foods better. I remember looking at the product brochure that came with the enzymes I was taking and there was another kind of enzyme meant for autistic people on a different diet called the Specific Carbohydrate Diet (SCD). One night I felt really awful and I was crying and I told my mom there was another diet for autism but they “couldn’t have anything good” but there were enzymes and maybe I should try those. My mom hugged me and promised she would look into the SCD diet. I was able to sleep peacefully with the hope that maybe I would feel better soon.
My mom turned out to be really interested in the SCD diet and was reading about how it was better than the GFCF diet. She convinced me to try it. This meant eating no grains or starches at all. At first I was only supposed to eat a few foods, like chicken soup with carrots, and bananas, and I was supposed to introduce one new food a time after a week or so to make sure I didn’t react badly to it. The one good thing that came out of doing this was it got me trying new foods. I started eating cooked carrots, and green beans and avocado, which I never would have tried before. After all, it wouldn’t work if I didn’t eat those foods and I wanted to get better. I was also supposed to have yogurt made from goat’s milk to get probiotics. The whole idea behind the SCD diet is that autistic people have the wrong gut microbes and the diet fixes that problem. There’s also a belief that you will initially feel worse on the diet before you feel better due to bad microbes dying off and releasing toxins. Of course this put the idea in my head that everything different about my brain was caused by toxins from bad microbes. Not just the self harm but the stimming and being introverted. If you have the autism acceptance viewpoint (which I do now) think about how devastating that idea is. I thought I was broken.
I felt really good on the SCD diet for a few months. I’m not sure why. I know it is nearly impossible for me to get enough calories on grain-free diets, and some people think they feel better on a restricted diet when it is actually an anorexic high. But after a few months my mental health started going seriously downhill. I was convinced I had to stop eating bananas because I thought I had a yeast overgrowth. I was having paranoid delusions about food. I was barely eating anything and was seriously underweight. I thought I would be better if I ate nothing but yogurt. Instead I became catatonic and had to go the emergency room I was in the hospital for 10 days. They said I had a major psychotic break. I got put on several different medications (and still am on some, just different ones). It took me years before I stopped having hallucinations, and even though I am much better now I still don’t feel like the same person I was before the psychotic break.
For many years after that happened, I went back and forth between different diets, and just eating whatever. I tried grain free diets again several times, but had to stop after a while because my mental health would start going downhill. It took me years to stop pathologizing myself. Now I know it’s okay to be autistic, and to rock back and forth and flap my hands. I still have a lot of trouble eating due to sensory problems, and my brain stops functioning properly if I go to long without eating. I’m not on any special diet, except not eating foods I am allergic to or that give me migraines. Ironically I am not eating gluten or dairy. But I am still autistic, so I know diets are not a “cure” for autism. I think the autistic people you hear about being cured from diets aren’t really cured of autism, but they happened to be allergic to the foods they are now avoiding, so they are physically healthier and are not having constant meltdowns from being in pain anymore. I wish their parents wouldn’t say they are cured, because that will make them not have supports anymore, and they might need those supports later.