I came across an interesting discussion on Twitter, this morning, talking about connections between autism and stomach/intestine conditions.
Since I’m autistic, and I’ve got a lifelong history of gastrointestinal (GI) issues, I’ve got a few things to say about that. I understand that there are connections drawn between autism and microbiome stuff — where the bacteria in our guts are part and parcel of our problems. Some say that autism is a direct result of GI issues.
To this, I say, The Map is Not the Territory — And Symptoms Are Not the Same as Autism.
Autism, I firmly believe, is a different neurotype which makes us extraordinarily sensitive to sensory input, and the symptoms that most mainstream folks associate with autism (communication issues, lack of interactivity, lack of eye contact, perseverative activities, stereotyped behaviors, meltdowns, and yes — GI Issues — etc) are the direct result of our sensitive systems getting overwhelmed by external inputs.
We have a different way of processing the world, full-stop. And our experiences are intense. So, whereas someone else who’s non-autistic might feel nervous, might feel some discomfort, or might have an upset stomach… we autistic folks go into full-blown panic attacks, double up in pain (or feel nothing at all), or develop intense GI issues, such as colitis or some other GI trouble.
My own GI issues were intense, when I was a kid. This, I believe, was for a variety of reasons:
- My mother cooked food that was extremely difficult for me to digest. She’s hyposensitive, herself, and she apparently has a cast-iron stomach. She could eat all the food cooked in re-used grease she saves off her various meals. She could stomach the mixture of over-cooked (burned) food, together with under-cooked (nearly raw) foods she serves up. She could handle the combination of proteins and starches and sugars that sent me to the toilet, doubled over in excruciating pain, so many times in my childhood. She apparently never got constipated. Not that she talked about, anyway. So, she never had the GI trauma experiences that I had, growing up. My mom has major sensory overload, and she’s always had a lot of trouble managing her time, but she just “bombs through it”, as she calls it. She just does what she pleases, and the rest of us are on our own. If your stomach can’t handle the food she cooks, too bad.
- I could not communicate my issues to my family. First off, I was ashamed. I felt so self-conscious about my bowel troubles, and I didn’t know how to describe them. I also couldn’t figure out any cause-and-effect relationship between the food I ate and the experience I had afterwards. I would sit on the toilet, doubled over, kneading at my gut, trying to move the gas from one side of my intestines to the other… or just trying to move my bowels. Nothing ever worked, and I was too embarrassed to mention it to anyone. Developing hemorrhoids in childhood because your bowels won’t work right is no fun. But I had no way to talk about it. And that meant there was no way to explore different food choices or a different approach to eating.
- I had no choice — I had to eat what was put in front of me. All of it, in fact. We grew most of what we ate (including the meat), so people had put a lot of work into putting that food on the table. It was not permissible to leave any food on your plate. We composted, so it wouldn’t have been completely wasted, but the very thought of not finishing what was there, was unthinkable. So, I had to eat all the under-/over-cooked food and combinations of foods that produced tons of gas and also constipated me.
- I was a nervous wreck. I was always afraid, always on edge, always confused and uncertain when other people were around. I was overwhelmed by school — especially in the early 1970s when integration was happening, and schools were in a state of overcrowded social turmoil. My household was also in a state of constant chaos — my mother loved it that way. It was creative for her, and she thrived (still does) on the pandemonium. There was no escape, other than leaving the house, getting out in the woods, or “losing myself” in a book. I did a lot of that, but still, all roads led back to my mother’s house. My father (let’s talk about him, shall we?) was an extremely anxious guy (still is), who would snap at us over the smallest thing. Call us names. Laugh at us. Deride us if we disagreed with us. Ignore us, and then suddenly emerge from his distant fog with an extended monologue about something only he cared about. Aspie? Oh, you bet! And he didn’t manage his issues at all. Because he didn’t have to. He was the “man of the house”. The patriarch. He could say and do anything he pleased, because he was Father. Needless to say, my own Aspie-fied disregard for default authority figures didn’t go over well with my Dad. He and I clashed for years and years — but he apparently barely noticed. He’s one of those folks on the autism spectrum whose empathy is spikey — either he has it, or he doesn’t. And when he was at home, he didn’t.
- I was drinking milk. Milk always made me feel terrible. Mucus. Headaches. Feeling “gunked up”. This is in addition to all that under-/over-cooked food. I call it out specifically, because it was the one thing I told my mother that I didn’t like — that it made me feel bad. She dismissed me and insisted I keep drinking it. I have cousins who are all allergic to cow’s milk (even though they lived on a dairy farm), so that might have been a “red flag”. But no. And it messed me up. It really did. It wasn’t until I cut it out of my diet, about 10 years ago, that I got some relief. I’d been continuing to drink it, not realizing how much it was bothering me… but then I put a bunch of stuff together (trying to figure out the causes of my meltdowns), and I cut out all dairy. Oh, magic!
Unfortunately, as a kid, I had very little control over these things. But guess what — I’m all grown up now! And making changes to my diet has done wonders for my autistic issues. I don’t have the kinds of nuclear-grade meltdowns I used to have, to as frequently as I used to have them. Nor do I have the same problems with crippling gas, constipation, and feeling “gunked up”.
Is my autism caused by GI issues? Impossible. But, my behavior and cognitive challenges are certainly closely tied to what I eat… along with the other aspects of my life. If I eat wrong, it stresses my sensitive system. And my system intensifies the GI symptoms, which in turns intensifies my autistic challenges. Eating wrong (oops, I succumbed to the allures of an Italian sub, last week, having both the big sub roll and some Provalone cheese) undermines me.
When I look at particularly challenging times for me, I can see how they’re prefaced by poor diet choices, insufficient sleep, and not enough exercise. They all individually add stress to my life, but in combination — Woo hoo! Buckle your proverbial seat belts, ’cause we’re going for a cognitive-behavioral un-amusement park ride!
So, that’s my little spiel on autism and GI issues. When I eat right and manage the stressors in my life, my autistic expression is a lovely, beatific thing — truly inspiring. And when I eat wrong (and don’t get enough sleep and get off my routine and otherwise manage my life poorly), the way I am is little more than a source of vexation for everyone around me.
No judgment. Just observation. I’m secure enough to call it like I see it — and know that being impaired at certain points doesn’t make me impaired at all points. It’s also important to accept those low spots as motivation for doing better.
Autism and gastrointestinal issues — so closely related. But my gut isn’t what makes me autistic. It just makes being autistic more … “eventful”.