Not A Puzzle Game, But Pretty Close | My Life As An Autistic Person
Zeke and I are going to take a trip to Las Vegas someday, just the two of us. No matter how badly I strike out at gambling, I rest assured knowing that I can’t get as unlucky as I did in my formative years, where I was cursed with several invisible demons that will follow me around for the rest of my life.
They are most commonly known as Autism Spectrum Disorder, Generalized Anxiety Disorder, and Obsessive Compulsive Disorder.
I’ve talked about the latter two in the past, but now is the time I want to specifically address how autism impacts my daily life. With the holiday season upon us once more, I figured now would be a good time to discuss all the things that make it difficult for me: how sensory issues make sitting at crowded tables almost impossible, how my difficulty reading social cues has caused me multiple problems with family members, and so on.
But first, some backstory.
I received my official diagnosis when I was six years old. It’s important to note that this was when Asperger’s Syndrome was still a medical term instead of being under the Autism Spectrum Disorder umbrella. Since I was not only capable of speech but had a large vocabulary for somebody my age (I had already read lots of books and watched plenty of educational television), I was considered “high-functioning”.
Oh, if they could only see me now, clunking out paragraphs in the dead of night while shoveling handfuls of Cheez-Its into my mouth.
First of all, here’s a useful tidbit for all you neurotypicals in the crowd: those in the autistic community who are more “in the know” generally reject “functioning” labels. They’re based in the idea of autism as a binary instead of a spectrum, and are used to either put people up on “model minority” pedestals or strip them of their humanity.
From my experiences, when somebody says an autistic person is “high-functioning”, they’re tacitly looking for permission to treat you as somebody who doesn’t need help, as somebody who “isn’t REALLY autistic”.
If somebody is “high-functioning”, they’re assumed to have reaped all the “positive” aspects of autism: they’re assumed to be smarter than the average person, as well as having some sort of savant skills. I just want to make it clear that I am nothing like that. If I was to be diagnosed now, after puberty, I would be considered moderate-functioning, at best. I don’t have particularly high intelligence, and I have debilitating motor skill and communication issues where my savant skills are supposed to be.
I feel like I got ripped off.
Here are some aspects of autism that impact my life the most (please note that everybody on the spectrum experiences their symptoms differently, and that these are just my experiences and perspectives):
Sensory issues
One of the most well-known traits of autism is sensory processing issues. Autistic people tend to experience the sights, sounds, etc., around them much differently than neurotypicals. Ordinary sounds, like car horns or rustling leaves, can quickly become overwhelming. Textures of clothes, right down to the tags and inseams, become causes for concern. Think of these sensitivities as allergies of sorts, rather than us consciously being picky or difficult. People with sensory issues often stim to block out negative input. Stimming, or self-stimulation, can take the form of hand-flapping, rocking back and forth, tapping fingers on tabletops, and more.
My sensory issues are mostly sound-related. Specifically, I often have a hard time with public spaces because with larger, more wide-open areas comes a sort of “background noise” that’s hard to explain but harder to deal with. Add on the layers of other sounds like multiple people talking at once, all of their words overlapping, and my brain just goes into static. My stimming is mostly me bouncing my right leg when I sit down. Like, I’ll just be sitting down and suddenly I’m bouncing my leg in place. I often get accused of being impatient and rude when I do so, but then I just explain why and most people understand. I also invested in a pair of noise-canceling headphones that I now wear almost all the time. While they let some sound in, they primarily help filter sound so I can actually hear what people are hearing, even in otherwise loud environments. It’s not perfect, but it helps.
Difficulty in social situations
I’ve previously mentioned that back in elementary and middle school I was bullied for being “weird”. The teachers told me that I should act more “normal”. A lot of neurodivergent kids can probably relate to this. The thing is, on paper it does seem like “our fault”. We endlessly talk about our special interests, don’t express emotions “appropriately”, tend to not sugarcoat our thoughts, and have trouble maintaining eye contact and other attention signifiers. If we just stopped doing those things and acted more like our peers, it would solve our problems, right?
Well, it’s not like we don’t try. It’s called masking, and it often goes on for our whole lives as we ignore our struggles in order to fit in. The thing is, it’s exhausting. We end up burning ourselves out, and sometimes never discover who we actually are. At the end of the day, we’re stuck without an innate sense of how to say the right thing.
That’s something I’m terrible at. I can’t pick up on sarcasm, so I often respond “too seriously” to jokes. I feel like I have… whatever the opposite of mind-reading is, so I often jump the gun in conversations and, in an effort to not be left behind, accidentally put words in people’s mouths. When my comments are poorly received (which often happens since I don’t know how to express the “correct” thoughts and feelings), I try to explain what I meant, but it usually gets interpreted as me backpedaling and making excuses. All of this tends to put people off. “Socially awkward” doesn’t begin to cover it.
Social interactions are like those coin-push machines: after your input, what happens next is entirely out of your control.
Unfortunately, my issues within social settings don’t stop with strangers. It leaks into my family life. My main problem with human interactions- besides being mistaken as “rude”- is that I have a very short social battery. After a while of attempting to talk to people and be around them, there comes a point where I just run out of gas.
If you’re thinking to yourself, “Well, you don’t have to talk to people if you don’t want to!”, please understand that my family, for the longest time, was not like that. If I wasn’t glued to every single word my relatives were saying, I was “obviously preoccupied with that damn cell phone”. The worst of it is when I accidentally said something “sassy” and got yelled at for it, but when I asked what I said wrong, they would say “You know what you did!”.
No, I didn’t know. Why couldn’t they just tell me?
Special Interests
First, a quick definition:
Probably the most known “special interest” among autistic individuals, specifically young boys, is trains, or other sorts of machinery. I wondered why this was the case for a long time, but then it hit me: if the world around you is full of people who act in seemingly mysterious ways, of course you’re going to gravitate towards something with very specific, easy-to-visualize functions and processes.
I have a couple of special interests that have stayed consistent since I discovered them. I’ve previously mentioned that I’m a magical girl enthusiast, which has been the case since I was ten and hasn’t waned since. I’m even working on pitching my own magical girl series someday! My other special interest, interestingly, is politics. As a kid, I was interested in books about the government and political parties, and over the years I’ve changed my political positions several times. Mostly, it’s just fun to keep up with what’s going on… depending on the people I associate with at the time.
The problem with special interests is that they usually change. It’s hard for neurodivergent people to pick career paths based on the things we’re interested in, because we’re not sure we’ll still be interested in them tomorrow. It’s not that we suddenly hate them, it’s that we move on, often while still holding these interests near and dear to us as a part of who we turn out to be.
A note to anybody who says “It’s just a phase” in a dismissive sense: to be temporary is not to be insignificant. But it’s hard to make a career out of something temporary, so neurodivergent people often end up in safe yet unfulfilling jobs that, by the way, do a terrible job accommodating us, but that’s for another time.
Another thing with special interests is that sometimes they amount to hyper-fixations. This isn’t self-evidently bad, but people often judge you for “obsessing” over things they consider “stupid” or “mindless”. I have a huge problem with critiques of nerd culture that amount to “these people need to stop building their personalities around shows/movies/games/etc. they’re fans of!” because that’s a thing that… just happens.
Especially because it’s not hard to picture that a large portion of fandoms are probably made up of neurodivergent people. I could go into detail on the link between anti-fandom rhetoric and ableism, but not right now. I’ve been around the block with, and observing, fan communities of all sorts, and I know what it’s like to be maligned just for having these interests. Which brings me to…
Hyper-empathy
Look, I can deal with too many people talking at once, with the right coping mechanisms. I can occasionally work my way around a conversation without saying the wrong thing. But if there was one- ONE- aspect of autism I wish didn’t impact me, this is it.
My article “Campfire Stories” was based around the general idea of not judging groups based on the actions of a few. Some people mistook me for a butthurt fandom-dweller, but actually, I’m not in most of the fandoms I came to the defense of in that article. I’ve had some experience with them based on where my special interests lead me (ex. Steven Universe and Undertale), and those particular fandoms have been forced into the center of the “toxic fandom” discourse for things that most people had no control over. The reason I’m quick to defend people in groups I’m not even in who I feel are being unfairly maligned is that… I know how it feels.
(By the way, why does it seem like the “worst” fandoms are ALWAYS the ones I happen to be in?! I swear, it feels like a personal attack on me.)
It’s not just in the case of fandoms, of course. I’m always that person saying stuff like “I think what he meant was…”, even in cases where the original statement was arguably reprehensible. I get called a “Devil’s Advocate”, even though I’m not excusing the statement I’m trying to decode. I just know how it feels to have people misunderstand you. But, trust me, if I could turn off these urges, I would.
While autistic people are often stereotyped as not having empathy, the opposite is often true. We just express it in ways that are sometimes found… unusual.
“But Your Disability Is A Superpower!”
Really? Is my staggering lack of fine motor skills (making things like tying shoes, pressing buttons, and writing, extremely difficult) a superpower? Is my ability to alienate swaths of people with a single slip of the tongue a superpower? Are my irregular and actively detrimental sleeping patterns a superpower?
The things I mentioned previously, like special interests, are qualities that are neutral at the best of times. But some aspects of autism just suck. And I’m tired of being told that it could be worse.
People who tell me to be glad that I’m not “low-functioning” don’t know what it’s like for me to suddenly go nonverbal when overwhelmed. People who tell me to be glad I wasn’t part of “Special Ed” classes have no idea what it’s like for teachers to ignore my requests for academic accommodations (even if they were listed in my IEP). I’m nowhere near the “high-functioning” archetype that lives in people’s minds.
But… while I wrote this piece to get some things off my chest, and to educate people on autism from one person’s perspective, I didn’t do it so people would feel sorry for me. That’s not how I roll.
In truth, my life, while made difficult by my developmental issues, isn’t a total nightmare. I’ll talk later about the subtle ways my idiosyncrasies have led to the best aspects of my life, even in little things that make my everyday routine comfortable, even entertaining.
And that’s just it: while I may wish I was different, the ability to use my voice to convey ideas, to make people understand, makes it all manageable.
I may not have everything under control, but I’m trying my best.
If you have any questions for me about what having autism is like, feel free to ask. I’m always open to the idea of educating people.
Thanks so much for reading. Until next time, stay on the hook!
