Autism is the Rosetta Stone for my life

Autism is an important part of my story. But how do I tell it?

I left my job in August after having a meltdown.

What got me there? Even though I was still on a wait list for an adult autism diagnosis (a process that ultimately took over a year), I was starting to become aware of how it manifested for me. I was talking with my employer about it, not really knowing what kind of guidance to give them really. But something was feeling really uncomfortable, and increasingly so. Everyone was being very professional, so what was my problem?

The meltdown was really intense. I was punching a pillow and screaming into it at the same time. It was a much amplified version of something I’d experienced before, and so much so that the dynamics of what made me feel that way became much clearer to me.

Up to that point autism was ringing a bell for me, a pretty big bell. But at that moment I realized I’d read about a specific autism subtype that lined up exactly with my life experience. It was called PDA, described as an anxiety-driven need for control.

Within days I was deep in the literature on PDA. I joined online groups, and realized all of a sudden that I was basically a textbook case. I had never been textbook anything before. It’s hard to describe what this was like for me. Suddenly so many experiences in my life made sense. It was like finding a Rosetta stone for my life.

The mental model I took away from my research was that PDA is basically ASD plus ADHD. ASD + ADHD = PDA. I was born with it, but in 1978 it hadn’t even been discovered yet, so it was never recognized in me. I experienced hellish levels of anxiety, sometimes straight up panic, but I had no idea that wasn’t normal.

In retrospect, there were always signs. One of my earliest memories is of having a meltdown at kindergarden when they tried to move me to a different classroom. It was a way way over the top reaction, where two teachers had to restrain me and drag me into the next room. Change was always hard for me.

I held it together at school for the most part. That’s very common for PDA kids, who will recognize the import of academic success in society and focus like hell to make it work. Most PDA kids seem to be diagnosed based on having meltdowns as soon as they get home from school. They have a physical need to release the monumental tension building in them all day, and as soon as there’s a safe environment to do so, they let it rip. In my case, my mom ran a therapy practice out of her home, and usually was with a client when I got back from school. She had a strict rule that I not be seen or heard by her clients, because she didn’t want them thinking a kid was listening to their sessions. Me having a meltdown at that moment would jeopardize our livelihood. So I had to hold it together at home too.

So I guess it’s no surprise that I got really fucking good at holding it together.

By the time I was 14, I was suicidal. I luckily found a family member — a great-aunt — who was willing to talk to me about …. absolutely everything. It was life-saving for me to have someone who could give me straight feedback on whatever I was dealing with.

But for all the conversations I had with my aunt, I was missing the Rosetta Stone of PDA to make sense of everything. My autism stayed in the background, and I constantly redoubled my efforts to “work on” countless behavior patterns. I’ve “worked on myself” my whole life.

But it’s hard to work on interesting stuff when I’m spending so much energy working on … myself.

My favorite examples of moms with PDA kids are Sandra McConnell and Kristy Forbes, both of whom recognize that PDA people require customized social contracts. Their environment needs to see them, needs to understand what they’re experiencing, and needs to co-regulate with them.

But it’s up to me to define what that social and professional contract needs to be. There’s no template for it. God I wish there was a template! But I’m working on it from first principles.

Good thing I found my Rosetta Stone.