I didn’t know anything about autism outside of the memes and jokes. Maybe it says a lot about the corners of the internet I used to inhabit, but I used to see a lot of those – “haha autists b like” and I’d be like, that’s dumb, everyone’s like that. Well, apparently not everyone is like that, I’ve discovered. But that’s jumping ahead. I didn’t understand that until a decade or more later. Back then, I just laughed along, tho I was never quite sure why. I admit, I dipped into the /g/entoo memes a little, I frequented the Nixers IRC; I even got an autistici.org email address and this very blog you see before you. (It turns out the autistici folks are fucking awesome.)
And then, in 2015, I had a kid – my second – whose early childhood has been… complicated. In order to talk about his Autism, I’d like to briefly dip into Guild Wars 2.
In Guild Wars 2 (one of my autistic special interests) disabling or damaging spells that have a duration (aka dots or debuffs) are call conditions. When playing Player vs Player content, condis are crucial – and so, condi *cleanse* is crucial – and thus arises the concept of a “cover condi.” A cover condi is a condition to put onto an enemy whose primary function is just to add to the list of condis, so when the enemy uses a spell that cleanses, say, 3 conditions, you have a better chance of your important conditions remaining.
When my son was diagnosed with autism, it was a cover condi diagnosis. My son has Williams Syndrome – an extremely impactful genetic deletion that impacts learning and development, as well as causing heart, kidney, and lung issues, and a host of other crap. It’s extremely rare. As a result, because we are United States of Americans (hooray), we have had to repeatedly go back to our health insurance company and explain in detail why he needs X and Y, and get extensive doctor notes, despite the fact that his is actually a quite typical presentation of Williams Syndrome. They don’t know what the fuck it is, so when they go to make their list of “ok treatments” they just never really put anything on the list, because they can’t be bothered to actually look it up and find out what treatments WS requires.
(Side note: USA health insurance companies are so fucking evil.)
Autism, however, is not only more common, but heavily publicized. In recent years, there have been a number of laws passed that require health insurance companies to provide certain care for people with autism – specific treatments many of which benefit people with Williams Syndrome as well. So, when my son was diagnosed with autism, we didn’t think much of the actual autism – and we honestly still don’t – his main, day-to-day struggles are with WS. But the diagnosis made dealing with the health insurance company drastically easier.
One day, I decided to look into it. Well, YouTube may have noticed that I seem to fixate on specific topics and watch large quantities of videos on that one topic, only to suddenly abandon it and never watch another video on the topic. YouTube was like, hey, this person might like this video on whether you have autism.
I’ll link the one. It was like a smack in the face, but with something soft – it wasn’t gentle, but neither was it painful. It was like this guy was explaining all the things I had been experiencing my entire life. At first it was just the superficial stuff:
- I like information organized in lists
- I eat the same thing every day; I would wear the same thing every day if it were acceptable
- I’ve spent half my life staring at people who are talking and trying to figure out how I’m supposed to respond, and envious of those to whom it came naturally
- I’m extremely logical, with skills in logical reasoning that are vastly superior to all my other skills – though, to be fair, that particular skill kinda carries other skills up with it.
- I can say things like that without any intentional arrogance, merely an accurate (logical) evaluation of the information – and I never understood that it really, really sounds arrogant to other people when I say things like that
- I completely fall apart after too much time around other people – parties, work, even commuting – and that falling apart results in an inability to communicate, sometimes I can’t eat or drink until I’ve had hours to myself.
- Bright lights, overhead lights, and fluorescent lights are horrific. I can’t touch most jewelry. My feet need to be covered indoors, either slippers or shoes, never just socks. Outdoors is fine, I don’t know why, I can be barefoot without any issues if I’m outside. Too much sound or noise or activity overwhelms me and I get to a point where I can’t process any of it, even if someone is speaking directly to me during it.
- Any sound that happens more than once, I start to hear patterns, rhythms, and those rhythms can get stuck in my head for hours after the sound is gone. This happens with exterior noises, obviously, but it even happens with speech, if a person reuses a phrase with the same intonation. It’s weird. There are phrases and intonations whose rhythms still come to mind occasionally, years afterwards.
I could go on, but I’ll never be satisfied with the list. The point is, these are all exemplary of the diagnostic criteria for autism.
The thing is, though – I had no idea. My understanding of the difference between me and others was a mess: I’ve always felt so fundamentally different from everyone else that I’ve never felt like a part of any community or group of friends I’ve been “in” – but, at the same time, I also didn’t understand the depth of the difference between what seems normal to me and what’s normal to other people.
I had never seen all these idiosyncrasies assembled all together – it was only when I learned about autism that I discovered a connection between, for example, my weird thing about jewelry and the fact that I eat the same thing every day. I had no idea I was particularly different – I mean, I knew I had these eccentricities, but, until recently, they were scattered. I had no words for the things I experience, no framework or vocabulary to even start to think about describing any of this.
It was when I started understanding these fundamentals that the superficial opened to the deeper examples, historical, foundational aspects of who I am and the process of getting here.
I guess this is as good a place as any to put a break in here.