Where I discover I am autistic at the age of 47

Note: this was originally posted to my Substack on Dec 9, 2021. I deleted my Substack a couple years ago and I’m posting these here so they won’t get lost.

When he was 11 years old we bought my son Z (I’ll call him that) a bowler hat. I think we originally got it for his Halloween costume. He loved it and started wearing it all the time. No matter where he went, at home or in public, rain or shine, he kept that bowler hat on his beautiful round head.

I thought it was a charming eccentricity, thinking to myself “he really loves that hat!” feeling pleased about it as you do when your child finds something in this merciless world that makes them contented. But he kept wearing it and I started to feel embarrassed. My wife and I knew that our role in Z’s life as Good Parents was to calibrate our children to the expectations of Society, so strangers aren’t confused or upset by how the children look or speak or act. Society can’t allow for exceptions because where that would lead? Rich people get to be eccentric because everybody around them only cares about their money. We’re not rich so we have to fall in line.

However: Z has a sibling who is four years older. We had learned what might be the most important thing I have ever learned: children don’t learn through discipline, they learn through example. I know how corny this sounds -- and I’m breaking my own rule against never, ever giving parenting advice to anyone, but -- you must do it. If you want your child to be a good person you have to be a good person. It’s so easy to be petty and mean and mocking and that becomes their mental script. Sometimes it’s exhausting to be as kind and generous as possible. Not perfect! If you try to raise perfect children no one will come to your funeral.

That’s enough of the Advice Column. We learned to love Z’s hat because he loved it, and we love Z very much – much, much more than we desire Society’s approval – so it was a simple equation. It gave Z an aura of dignity and poise. It also helped that he was a charming young man who happened to adore puns. And we learned about the history of bowler hats, how they were designed to be sturdy and stylish, a combination hard hat and working class men’s apparel. Our daily existence is more interesting and better-looking because of Z’s hat.

We wanted to understand Z better. We suspected that he might be on the autism spectrum and we wanted to make sure that we could help Z however he needed us to. So when he was 13 years old we brought him to a neuropsychologist for testing. He charmed the testers, of course. He took a few different tests and sure enough landed on the autism spectrum. On the one hand he scored in the top 99.7 percentile for verbal ability, which explained all the puns. The tester told Z that in a theoretical room with 1000 people, only 3 would score higher than him. We were in the actual room with Z when we heard this, so we were definitely humbled. On the other hand the tests confirmed that Z has a hard time processing information in groups, especially with audio. He can also get flustered when he wants to talk and it comes out too fast, so he has to back up and try again. And he has other autistic patterns and habits. One thing we’ve noticed is his meticulous attention to detail, especially in two areas: preparing food and painting wargaming miniatures. I’m always impressed by his patience and jealous of his lunch.

When Z first learned he was autistic he took it in stride with a swoop of his hat. Having it all confirmed by an authority figure meant that other people would take us seriously. And the clarity was liberating. Z learned a great deal about autism and autistic people over the next few months. Before long he was openly proud to be an autistic person.

Very late in 2019 I started to hear about a "Chinese virus outbreak" from, of all things, a podcast that both explains and makes fun of Alex Jones. I mostly forgot about it until early 2020. My workplace shut down in mid-March 2020 and we all started working from home. We mostly had each other for company for weeks, then months. Z could relax and be as autistic as he wanted because Society was paused.

That's when I noticed it.

Z would do something and I would think: well I do that too. He would tap his fingers on things. I tap my fingers all the time, sometimes to tunes that loop in my head. Z would stick closely to regular routines, which I like to do. I realized that I have a kind of politeness that's almost an exaggerated performance, which Z sometimes does. For as long as I can remember, I've had a fast, complex pattern of pen or pencil-flipping that I do with one hand; it used to drive people crazy because it was so distracting. My wife pointed out that Z was doing it while he was working on a math problem. There were other things, small things, but they began to add up.

One summer day I decided to go online and look at some common aspects of autism in adults. I could imagine that one or two could apply to me and I was curious to see what they were. Then I started to tick them off. "Prone to monologue on a particular subject," sadly yes. "Exhibiting strong, special interests," absolutely. "Tendency to engage in repetitive or routine behaviors" -- I have patterns that repeat like programming subroutines that are coded to loop over and over again. "You're the 'absent minded professor' of the family," "you often invent your own words for things," "you prefer individual games and sports," "you stick to regular routines and get upset when they are changed." Yes to all.

I also realized that some of the things I've always done I assumed everyone else did too. I love foreign languages -- I've studied Russian, Italian, French, and Ancient Greek -- to the point that I like listening to songs in languages I don't understand. Apparently that's not normal? I've always had facial tics that would show up for weeks, sometimes months at a time and then disappear. My mother used to call them "nervous habits." Not everybody had those? Not everyone gets self-hypnotized by random, minor details they notice in visual or audial patterns, so that they tune everything out? Gets physically upset by loud noises that everyone else things is fine? Is ridiculously early for everything? Doesn't like eye contact and absolutely can't stand most social interactions with other people? Is totally adverse to conflict? Was it just me?

I had always been told I was shy, or anti-social, or just eccentric. Things that were normal to everyone else, like being with friends or being with crowds, exhausted me. I went through regular bouts of self-loathing and physical lassitude, which led me to think I had bipolar depression. I confessed this to my old boss and she declared I was "moody" and should get over it. After several years, those waves of depression stopped. Now I began to think that all along I had been constantly fighting myself.

As such things go I was the last to realize that I was almost definitely on the autism spectrum, just like Z. I don't have a neuropsych test to go off of, so I can't prove it. But the circumstantial evidence is compelling. Suddenly the previous 40 years of my existence make sense. Z had begun to point out to me directly times when, without realizing it, I was doing things that autistic people commonly did. Once during dinner I confessed that I had a kind of false persona who could be gregarious and friendly in order for me to get through most social interactions. Z slapped his hand on the table. "Dad, that's an autistic thing. It's literally called masking."

Z is fiercely proud to be an autistic person and it outspoken about all the condescending, misguided, harmful attitudes towards autistic people. My own experience tells me that a lot of self-destructive behavior by people with autism might come from living in a world that refuses to let them fully exist. Thriving as a human being, experiencing respect and socially-recognized agency, can be an effective treatment. Experiencing social death is not.

For my part I'm not remotely ashamed but I'm still trying to understand myself. When I was Z's age everything I knew about autism came from the movie Rain Man. The word "neurodiversity" was coined by Judy Singer in 1998, the same year I graduated from college. I only had a real frame of reference after Z was categorized as autistic. Just a week ago, the US Centers for Disease Control reported that, based on their data, 1 out of every forty-four 8-year-olds in the US were categorized as autistic. I have some catching up to do.

I recently asked Z to tell me something which made him proud to be autistic. He told me it was his love of delving deep into subjects that fascinate him -- superorganisms, Warhammer 40K lore, indigenous technologies, all kinds of topics. One of these is the Mycorrhizal network, also known as the "wood wide web." A person walking through a forest is interfacing with an immense organic communication network underneath the soil without knowing it. All along I was strolling through the Amazon colliding with trees, not realizing the real forest knew I was there, was sensing and thinking around me. Halfway through my life I am stopping to put my hands into the soil and find those roots. They've been supporting my weight but I couldn't sense them. I need to reach into the earth, touch them, and listen, and meet them where they grow. If I can commune with them maybe I can stand strong, and rise up, and touch the sky.