Two years after my autism diagnosis

posted by Jeff | Friday, November 17, 2023, 11:44 PM | comments: 0

It was two years ago yesterday that I walked out of a grueling evaluation with a psychiatrist with an official diagnosis of autism spectrum disorder, as well as ADHD. I wrote a ton about it at the time, and generally everything there still tracks. Again, it was not surprising, but something about having it on paper vastly changed the way that I look at myself and my life to that point. It's as if I somehow had permission and justification to reframe my past life, and be free to define it as I wish going forward.

I'll start with the basics. I'm happy to talk about it, and it frequently comes up in conversation, often by extension of talking about Simon. Usually this goes one of two ways. The first is that the other person talks about someone they know with autism, and they either immediately acknowledge that it has little in common with my story, or they need to be reminded that if you know one person with autism, you know one person with autism. The second scenario is that it just makes them uncomfortable, and they want to change the subject. I was already in a place where I wanted to talk about it, going back to Simon's diagnosis when he was 3. Now I just happen to advocate for him and myself, and greater awareness of what it all means. To the best of my ability, at least.

I still have a hard time associating neurodiversity with identity, and avoid any online groups of people who have strong opinions about it. Someone once told me that "we" self-identify as "autistic," and I was like, really? I don't recall taking a vote or delegating that to anyone. There are sentiments that I have some feelings about, and in the classic autism sense, I can't reconcile some of those. For example, I hate that it's referred to as a "disorder," or worse, a "disability," because I don't think I'm broken or less-than. But I have to acknowledge that there are people across the spectrum who can't function autonomously, or even speak. It's really hard for me to even distill ASD down to things that people have in common.

What I've noticed more than ever is my weird physical... things. Some of them have always been around, but now I understand them. The picky eating thing is front and center, because Simon is the same. Only we're not traumatizing him for life and making it worse by forcing him to eat things he doesn't like. (He's still better off than me, because he does eat more fruits and vegetables.) Now, I accept that I like certain things, and I don't hate myself for it.

But there are so many tactile, sensory things that I'm acutely aware of. I can tolerate noisy environments, but I realize now how hard it is for me to do so, and how it causes fatigue. Crowded places are the same. I relentlessly thumb the corner of my phone case, and in the car I find myself trying to rub the cuticles of my fingers on the outside of the steering wheel. That's some weird shit. I find myself stretching weird muscles in my face when I'm trying to sleep. My aversion to body hair is stronger than ever, but I'm selective in its removal (I deal with the chest hair since I'm generally wearing a shirt). I've managed to stop picking my toenails by getting a pedicure now and then. How weird that I put a minor financial incentive, paying for toenail care, between me and the bad habit. At least I don't end up with bloody toes anymore.

I find that I'm constantly weighing my past interpersonal experiences against the awareness of current interactions. Looking back at my teen and college years, it was crazy how I especially approached romantic endeavors with the maturity of a middle schooler. I was just so oblivious to social cues, unable to take inventory of all the reasons I ended up in so many friend zones, but also the now-obvious times I could have engaged in fairly meaningless sexual encounters. But I've developed the ability to look at myself in those days and understand why I may have been perceived as weird to some. I'm not justifying any bullying or cruelty, and I'm not apologizing for who I was, but I get it. These days, especially at work, I'm hyper-vigilant about looking for missed cues. I can't always read the room. In social situations, this is less of an issue, because I just am who I am, and if I'm not offending or harming others, I don't feel like I should have to edit.

Then there's the parenting angle. Having autism in common with Simon means that I am deeply empathetic to what he's going through. As I've said, I've seen this movie before, and it's going to include a lot of heartbreak. But despite that empathy, I struggle to connect with him. His obnoxious teen behaviors in particular, the loud and boisterous stuff, is like nails on a chalkboard to me. It triggers the fight or flight instinct, and I don't want that. But I also project a lot of things on to him, which isn't fair, because he's not me. His indifference toward school is coming a few years earlier than mine did, and that's not helping him. So I'm always laying into him, and it's for everything from his inability to keep thoughts internal (he's impossible to watch TV with), to constant questions about everything and automatic protest of anything we ask him to do. Fortunately, we have some pretty chill nights on the weekend when Diana is working, and we at least have video games and limited music in common.

The hardest thing is the bits I talked about two years ago, about getting over all of the things that I didn't like about myself. That tends to be more about the ADHD, and how difficult it is to focus on a thing, develop good habits, start and finish things. I'm not a shitty procrastinator or devoid of responsibility. It's just the way that my brain is wired. I know a lot of people think that it has "super power" aspects, but triggering that sort of thing requires a deep self-awareness of when you're not focused, or too focused. It's funny how I find myself realizing that hours have passed and I either didn't do the thing, or I haven't done anything but the thing.

It feels complete bizarre to be navigating this sort of thing at my age, but here I am.


No comments yet.

Post your comment: