Autism is everywhere and in everythingJuly 13, 2022 -
I've been thinking recently about being on the Autistic spectrum.
But first, some trigger warnings: topics include some talk of sex and gender, emotional pain, burnout.
I thought it was about sexuality, or gender, or...
I've wanted to talk about this for a long time. Before coming out as non-binary, I was diagnosed in 2020 as being on the autistic spectrum. It hadn't even crossed my mind until a close friend recommended I look into it.
As I sat reading my diagnosis I just kinda started to unzip the first outer coat of many coats I'd learned to wear for the first 40 years of my life. I listened to podcasts, read articles, listened to other folks, and just tried to understand anything. Even more fundamental than sexuality, or understanding gender, was this idea that I had be fighting extremely hard to look and appear normal to the world.
I was exhausted.
Exhausted of opening up to people only to have them leave when they couldn't handle the intensity that comes naturally when I let my guard down. Instead of punishing myself, though, I had a key to understand something fundamental about myself. The way I viewed the world and how the world interacted with me as an experience was profoundly different than it was for most other people.
With each thought, I felt like I stripped off another outer coat and set it aside, until I could no longer understand how to communicate with people anymore. I still knew the tricks I'd learned. I still know how to "mask", to use patterns I'd seen other people use to appear more normal. But what I wanted to know was "what was I like when I didn't do that?". In essence, who was I?
When I told my ex, who I'd recently separated from, that I had been diagnosed she laughed at me. Rather than getting angry, it confirmed for me what I'd already known - there's just a deep-seated difference in the needs I have and the needs she had. In hindsight, it also confirmed another sad aspect of being on the spectrum: you can have a very large tolerance for people having bad expectations of you because you learn at an early age that you must accommodate others in order to survive. You have no basis for what a good boundary is. Perhaps just as bad, in my case I've found it exceedingly difficult to feel when the other person loves me, respects me, or otherwise. So I kept working harder in the hopes that at some point in the future something will feel right and things would click.
For months after my diagnosis, I worked backwards. I wanted to reach an earlier version of myself to see how long I'd been this way. You'll probably be unsurprised to learn I've always been this way. I remembered countless events that now made so much more sense. Times of overstimulation, panic, being unable to understand why my parents were punishing me, feeling completely lost as to why the kids at the new school did things and why they singled me out.
In time, as I worked backward, I began to ask questions like "how does sexuality relate to autism?" and "how does gender relate to autism?". Though the research here is fairly new, I came across terms like "neuroqueer" that talked about how autism can "queer" your own perception of your gender and sexuality.
I tested it on myself. Was that what was happening? The more I let myself just experience my inner world and not require myself to use images and concepts that I learned from outside, the more I saw sexuality and gender as basically formless goo. A kind nothing concept that carried value for others, but didn't seem to hold much importance to me.
When I say I'm non-binary, I mean...
...gender doesn't make sense to me as an internal experience. I wear the clothes I wear because I own them and they fit. I'm not thinking about what I'm wearing or how I'm presenting myself outside of the house unless my clothes are stained and dirty.
Gender, to me, feels like those clothes.
What it is like
Sex is nice, but it has nothing on the bliss of a hyperfocus. Losing track of time, where hours are there merely to serve as a dimensional tube to channel more of your topic into you. People are lovely and should be a part of life, but it's sad that many folks will never understand what it's like.
But this coin is so easily two-sided. In the computer industry, many a company has noticed that as long as they keep people like me "entertained with hard problems" we're happy. That is, until we burnout because no one reminded us to take care of ourselves.
What it's like for me:
- Imagine not knowing if your partner likes you or if they're just tolerating you. Imagine this going on for years.
- Imagine being in a tumble dry cycle of ups and downs and feeling like you come out of every social situation worse than you started.
- Imagine letting yourself enjoy a topic you find fascinating and the joy feels nearly limitless as you dig deeper. Imagine this lasting for days, weeks, months, or even years.
- Imagine being told you're weird most of your life and finding the only way to feel "not weird" is to completely ignore yourself.
- Imagine not having the ability to socially read the person in front of you until you've spent many hours with them, or they remind you of someone you knew 10 years ago and you hope that they're similar enough they'll react to the same things.
If this sounds like you, perhaps you're like me. If so, welcome to the club.
In autism club, we embrace what we are and who we are. There are snacks, heavy blankets, endless libraries, friends to do projects with, calm lighting, soft sounds, and a universal welcome to any and all parts of you. You don't have to mask, and we won't ask you to. Autism club is welcome to all ages. It is our hope that young and old from all walks of life will join this club and bring who they are to it.
We make this club for ourselves.
Here you can feel your feelings in the way they come out, as intense as they are or even the mildest whisper. You don't have to cut them off. You don't have to ignore the urge to self-stimulate to help direct the energies you feel.
Carrying the club with you
I've been trying to learn how to carry autism club with me, wherever I go. Not only so I can be welcoming to others, but I can also be welcoming to myself. The term self-care feels like it almost gets overused these days, but it's still just as important. Checking in and understanding your needs -- even the ones you were taught to ignore -- opens the door to giving yourself space.
I, for one, need that space. And I hope as I grow older, perhaps I'll also grow more capable of being a better support to myself and others. Perhaps I'll also find the right people who can be that to me in return.
As I write this, I don't have the perfect thought to end on. Just this idea that everything is ever changing, and that's us too. There isn't an endpoint to this journey because what it means to think and feel and experience the world through the way we process information is so central. I carried it with me into the start of this post. And, as I finish, I'll carry it with me from here.