Fifty years. That's how long I went without anybody, me included, saying the word autistic out loud. Not a teacher, not a doctor, not a boss, not one of the people I worked with in three countries.
I used to think that meant they'd all missed something obvious. Now I think it's more that nobody was looking, and I was very busy making sure there was nothing to see.
So why do some autistic adults never get diagnosed as kids? Mostly four things. The criteria didn't exist yet in their current form. The picture of autism back then was narrow. We learned to hide it. And something else, usually louder, got the attention instead.
The criteria were younger than me
This surprised me. The guide on adult diagnosis hosted by the Fédération québécoise de l'autisme points out that the criteria used today were developed in the early 1990s. That's why, it says, so many adults "passed under the radar" in childhood and for a good part of their adult lives.
Do the math on me. By the early 90s I was out of school and on my way. Nobody was going back to reassess a guy in his twenties who seemed to be doing fine, more or less.
Nobody was looking for a guy like me
When I was a kid, if people pictured autism at all, they pictured a child who didn't speak, rocking in a corner. That was the image. A noisy kid with too many opinions and a hundred obsessions didn't fit it. I could talk. I could talk your ear off.
The same Québec guide says some clinicians still rule people out for looking them in the eye, being articulate, or seeming independent. If that's still happening now, imagine 1980.
And later, when I was running things, it got even less likely. People don't look for autism in a guy who co-founded a web agency and can work a room. They see "intense." They see "difficult." Some days they see a jerk. Nobody sees a pattern.
I was hiding it, and didn't know I was hiding it
This is masking. It's the work autistic people do, often without realising, to pass as everybody else. You watch, you copy, you rehearse, you suppress the stuff that gets you laughed at. You get good at it. Some of us get so good at it we fool ourselves.
The FQA guide describes adults who developed coping strategies over the years that hide what's going on inside, so it escapes "the untrained eye." That was me. The tics I couldn't hide, I explained away. The obsessions became a career. The social stuff I did by brute force, then disappeared for days to recover.
Masking works. That's the problem with it. It works right up until it costs you everything. I go into that in what masking is.
The louder problems got the attention
This is the big one, I think.
Depression has been part of my life. So has substance use. And the robplosions, the blow-ups a friend named nearly 20 years ago, when I'd lose it on people at work. Those things are loud. They hurt people. They get noticed, and when you get help, that's what gets treated. I was in therapy at eight and had a social worker at fourteen, and nobody saw it then either.
Nobody asks what's underneath the anger when the anger is right there in front of them.
Research backs up that this isn't just me. An Autism CRC study of autistic adults found that autistic burnout often gets misdiagnosed as depression, anxiety, bipolar disorder or borderline personality disorder. The NHS notes that autism is sometimes picked up when a mental health professional is treating something else. Which means a lot of people get treated for the symptom for years before anyone sees the cause.
I've wondered, more than once, whether some of my drug use was me trying to turn the volume down on a world that was too loud. I don't know. I'm not going to pretend I've got a neat answer. I wrote about that question in was it self-medication for undiagnosed autism?
So was it anyone's fault?
I've gone back and forth on this.
Part of me wants to be angry. At school, at doctors, at the whole system that let me spend half a century thinking I was just broken. Some days I am angry.
But mostly nobody had the tools. The criteria were new, the picture was wrong, and I was working overtime to throw everyone off. Nobody conspired. That's just how it went for a lot of people my age.
What I can do now is say it out loud so the next guy figures it out at 35 instead of 50.
If you think yours was missed too
Start with the pattern, not a single trait. Lifelong, showing up everywhere: work, home, friendships. Write down examples from as far back as you can remember. Then look at how I figured out I was autistic and getting an adult autism assessment in Québec.
And if you're living with depression or substance use right now, don't wait for an autism assessment to get help with that. Both can be true at once. Treat what's on fire.