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Jackie Schuld Art Therapy Blog

I Want Answers for My Awry Autistic Digestive System

Autistics are significantly more likely to experience gastrointestinal disorders, as well as unexplained digestive pain, bloating, and diarrhea/constipation.


I am one of those autistics.


Illustration by Jackie Schuld

Throughout childhood, I had horrible, unexplained stomach aches. We could never figure out the cause. I did know that soda seemed to make it worse though, so I stopped drinking anything carbonated around the age of 8.


My 20s were a flurry of trying to heal myself. I went to doctors. I got tested for all sorts of allergies (all negative). I still tried elimination diets. I eliminated dairy. I eliminated gluten. I went to naturopathic doctors and got on a slew of herbs. I further eliminated refined sugar and even tried an anti-yeast diet. If you name a diet, I’ve probably tried it. Raw vegan. FODMAP. Anti-Inflammatory.


Nothing seemed to help. Furthermore, it’s like the more I focused on it, the worse it became.


Around age 30, I got on SSRI medication for help with anxiety and depression. An unexpected benefit was that my digestive system felt MASSIVELY better.


My digestive system has never again been as bad as it was in my childhood and 20s.


I also realized that I seem to do better when I stress less about my diet and just eat what I feel like, forgetting what is deemed “healthy” or “clean” or “good” for me. This approach is inspired by intuitive eating.


For the most part, this works for me. However, I occasionally get what I call “flare-ups.” This is when, for no discernable reason, my digestive system becomes painful again and I struggle with cramping, pain, gas, and diarrhea.


It is maddening.


Enter my autism diagnosis in my mid-30s. When I read about the connection between autism and gastrointestinal problems, it all made sense. In autism, the nervous system is on hyper-alert. This causes the digestive system to run amuck as the body prioritizes other systems.


In addition, the gut-brain axis comes into play in major ways. The gut-brain axis is based on the theory that the brain and gut directly communicate with each other. The gut can influence mood and even impact depression, anxiety, and more. The brain can also impact the gut, causing inflammation to rise due to stress and other factors.


This explains why SSRI medication improved my gastrointestinal health.


I am no longer on SSRI medication since I no longer struggle with depression. Furthermore, I think my autistic brain is the root of “anxious thoughts” and not actually an anxiety disorder. While I could take an SSRI just for my gut, I experienced other negative side effects (like feeling like a zombie and zero sex drive) that I don’t want to experience.


So enter me trying to figure out how I can return to a calm gut.


I’m not even asking for a happy gut. I would settle for a neutral gut. The kind where you don’t even think about your stomach because it’s just doing what it does.


Sometimes that actually happens for me.


And other times - I get a digestive flare-up. I am currently in one of these periods. It’s like my gut takes over my entire life. There is a constant ache in my pelvis, as well as an ever-present fear that cramps will suddenly hit me again and I’ll have to rush to the bathroom.


When I am in a flare-up, my digestive system is more sensitive to everything. It’s hard to put my finger on what though since I’m constantly feeling pretty crummy.


It truly feels like my gut is taking over my mind as I obsess about two things: what caused this and how can I make it stop?


When it comes to the cause, it's most likely stress. Unfortunately, as an autistic, my body often interprets life experiences as stress. For example, I recently got married. This was a very happy event - and my stomach was hurting the entire day. I was lucky I could keep excusing myself to use the bathroom.


I’m currently in the process of moving across the country and transitioning my in-person therapy practice to online. I’m guessing these changes may be the root of my gut flare-up.


It’s hard to accept this though, because there’s not much I can do about the triggers. I am excited to move. I want these changes in my business.


Enter my second obsession: figuring out how to heal my gut. My mind takes over, trying to find solutions for me. It becomes an incessant chatter in my mind:


I should do a clear liquid diet to give my gut a break for a few days.


Maybe I should eat less fiber.


Maybe I should try some new supplements.


Oh, what about a tea for gut inflammation?


I should definitely walk more. They always say exercise is good for the gut.


I need to reduce my stress. I can do more art to process all this change I’m going through.


Maybe I should see my therapist again to talk about all of this.


Why is it that hot baths are the only thing that soothes my pain? How much water am I wasting?


Maybe I need to find a new doctor that specializes in autism.


I should stop eating out.


Do I need to cut out all dairy and gluten again?


When I am in pain, there is almost anything I would do to get out of it. The trouble is, I don’t know what the clear answer is.


My sister experiences digestive problems as well. She commiserated with me on my health as I talked for almost an hour about it.


We came to the conclusion that is likely our lot in life, and that we likely need to have better gut hygiene (meaning doing daily things like exercise, drinking more water, avoiding high-fiber foods, etc.) and then be extra good to our gut when problems arise (reducing intake of food, increasing things that soothe pain, etc.).


I understand these conclusions are the logical ones, but my autistic brain doesn’t like it. It wants clear-cut answers and solutions. It wants to resolve the problem and have it never happen again.


Sadly, that’s not likely for my autistic digestive system.


If you’ve found anything that helps you, I’m all ears though.

 

Thank you for reading. If you’d like to read more, sign up for my FUNletter. If you would like to explore your autistic identity with an autistic therapist, you can learn more about my therapy services here.

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