Disability

I haven't been writing very much lately. And I guess it's because I'm disabled, much as I don't want to admit it.

I'm actually disabled in multiple ways. Firstly, by a psych report when I was in grade 1, that suggested a high probability I had autism and ADHD. My parents did not choose to follow up on that at the time. They did follow up between middle and high school, where I landed myself a formal autism diagnosis. No ADHD diagnosis though. They didn't test for that.

A few months prior to my grade 8 autism test, my class watched a documentary about Temple Grandin. For the unfamiliar, she's known both for work in ethical treatment of livestock and for being an outspoken public figure with autism. The documentary was about her experiences with autism and I remember sitting in the room becoming increasingly panicked, because everything she said about how her brain worked was also how my brain worked. I knew I'd been tested in grade 1. Someone would've told me if I were autistic, right? Right?

I asked my dad about it a few weeks later and he told me that there was a high chance, but they didn't want to get me properly tested because they were worried about how a diagnosis would've affected my self image.

I recall the autism test well, and I recall it with a great deal more joy than most others I know who've suffered through similar. I suspect this is because I was too young to have to deal with bureaucracy. My diagnosis was likely significantly more frustrating for my parents than for me. From my point of view, one day they sat me down in a quiet room with a kind doctor who paid attention to me, asked me questions, and brought me puzzles and games. And every time I solved a puzzle, I got told I was doing well and then they'd bring me another one! It was great for a little challenge loving kid like myself.

I do have complicated feelings about the test itself. I was only able to take the test in the first place, I suspect, because I'm white and wealthy and have caring parents and was (at the time) male. And that brings with it feelings of guilt, as though I personally pushed someone more deserving out of the queue, rather than the system itself being flawed. And the guilt brings other guilts. It's not my place to complain about this! I was not the victim! Don't take sympathy on me!

The whole system needs to be changed and I know that. A diagnosis should be easier to obtain. Doctors should be kinder. Wait times lower. You shouldn't need parents who would take time off work to make appointments. Having a diagnosis shouldn't cause problems with other aspects of the medical system (during a HRT consult, a doctor once called me a liar for claiming to have no existing conditions when he found the autism diagnosis in my file). The system sucks. Looking back now, I could be a lot better in my activism on this. I will strive to be better.

My friends often take online autism tests and joke about being neurotypical in such a way that we know that none of us are. I always worry I handle this badly, because it's something I struggle to understand. For my adult life, I have never had to doubt that I was autistic. The tests are always tinged with a weird energy to me, as though my diagnosis could be revealed to be in error or if I score weirdly, I'll devalue the test and ruin it for everyone else.

But also, a diagnosis is a weird thing to burden a child with (I maintain that I was a child throughout high school). It is both revolutionary and horrifying to realize that the reason you're ostracized and bullied is not some grand miscommunication or cosmic accident. It is you. You are measurably different and clearly worse. Congratulations. Everyone hates you and they probably always will. You will never find another person similar to you. Get fucked.

I don't think my self esteem ever quite recovered from that. Guess I just am inferior and unlikeable, huh?

Oddly enough, by the time I was an adult, I barely even thought about being autistic. I didn't even really think of myself as autistic anymore. I was just a person. One level to that is the more control I had over my life, the more I could organize things to my satisfaction, carefully arranging events and so on to prevent problems. After two decades of living with myself, I have a very good idea of what my limits are and I'm very good at planning around them.

For example, I am an incredibly picky eater. I also cook a lot of fancy dishes and love to try new things at restaurants, to the point that no one thinks I'm a picky eater. I have a very good understanding of my own taste desires. And, from years of cooking, I have a very good understanding of how flavours collide. I can eyeball almost any recipe or menu item and immediately decide if I will like it or not, with a very high accuracy. People who I cook for only see the few recipes I was willing to try, not the dozens I rejected for using bad ingredients. Most restaurants have at least one dish I can stand, and as long as I never go the same place twice, no one notices my lack of range.

Autism isn't a kind of person. It isn't really a descriptor, either. The way I see it, it's a recurring pattern of similar traits that often occur together. That was important to me, because at several points when I was young, people have used their own mental health as excuses to be cruel to me. And it was important to me that autism was never an excuse for me to sink to such levels, so I always tried to hold myself to the standard of a neurotypical person. And besides, I didn't really qualify for a diagnosis anyway, because they're so hard to get and I was so privileged. If I didn't deserve to have it, then I couldn't allow myself to use it for anything advantageous.

When I wasn't paying attention to myself, I felt like I was neurotypical. I didn't have any limits! I got so used to carefully balancing my social energy and maintaining the sensory levels in my environment and accounting for cool down times and planning ahead and so on, that I stopped noticing I was doing it. Because of all this, I decided I was not actually disabled. I refused to take funding or scholarships based on disability, which I did qualify for under a literal interpretation. I wasn't disabled, I was pretty sure.

But that's not actually true. Autism does limit me in many ways. It's in how I have to pretend to like other people's cooking, how I often leave events early or bail at the last minute, how I cannot tell what anyone else is thinking or feeling by looking at them, how I can't shut up sometimes, how meticulous I am about conditions I can work in, how I can't wear a lot of clothing for sensory reasons, how sometimes my brain just turns off when there's a background noise, how sometimes the event is bad because the sun is too hot so I leave after 5 minutes and everyone thinks I'm weird and hates them. I am functionally less capable than a neurotypical person in many ways, and that fucking sucks. And not letting myself admit it sucks even more.

My mom doesn't really get autism. She seemed convinced for most of my childhood that if I just tried a little harder, I could be less autistic. Perhaps she was right. When I told her I was transgender she told me that it was just "your autism confusing you". I still haven't forgiven her for that. I often conceptualize that as "my mom being weird" and not just "ableism", as though my autism hasn't been used many times to devalue my opinion about myself or my life.

I've been thinking about these things lately because I recently found my old psych reports, by which I mean that after years of asking, my dad quietly slipped them to me when my mom wasn't looking. My favourite part is in the grade 1 report, where after giving me relatively high numbers across the board for developmental targets, I get a terrible grade for writing. The comments section has the psychologist protesting the test design, trying desperately to argue that my theoretical understanding of writing is actually fine, my child hand muscles are just too weak to do it very neatly or for very long. The numerical grade remained unchanged. To be fair, I do still have the messiest scrawl you'll ever come across and I'm proud of it.

There's a lot in the reports. The parts where they called me a good kid made me smile. The bit where they describe me becoming withdrawn and sad when asked about social relationships is a gut punch to bitter and dark times. I wince when reading about my inability to not talk over the assessor. Someday, when I'm more ready, I'd like to write a detailed deep dive into the reports, if I ever feel up to it.

I bring all this up because I went biking today and that's why I can write. I only write effectively when I get time to myself without distraction and traditionally I only do that by walking, jogging, or biking. I hate walking and jogging, so I prefer biking. There's something magical about gliding along at high speed that jogging and walking just don't capture. The ability to travel distance quickly lets me find the scattered forests that struggle against the weight of the city. That has complicated itself in recent years. I can't get onto my favourite trail easily anymore because they took a bridge out. A lot of people don't really get that, wondering why I can't just go around, adding 15 minutes, a long staircase, and having to bike next to traffic to the route. The point of the route is that it is easy and effortless, hop on my bike and go, a product of the aforementioned autism.

Many of the most productive (and also happiest and mentally stablest) times of my life pair to when I go biking regularly. The most fit I've ever been was when I had a girlfriend across the city, who I would bike for an hour each way to go see. On previous summers, I've tried to go biking down my favourite trail often. Last summer, I would do an hour a day, right after waking up. Three years ago, I sorted out my gender while on a bike.

The solitude and boredom of exercise are vital to my writing process. I draft most of my posts and stories while biking. For example, the entirety of The Fastest Revolution came to me in a sudden flash while walking to a grocery store.

Today, I biked to the grocery store, 10 minutes each way. This was the first time I'd gone biking for a few months. Upon arriving, I realized a brother of mine had borrowed my bike lock and failed to return it. Unwilling to leave my bike unattended while I shopped, but desperately in need of groceries, I opted to bike home, recover my lock from my brother's bike, and then bike back, turning a 20 minute easy ride into a 40 minute ride, still done pretty slowly compared to my usual pace. I came home and cooked dinner.

I've spent the last half an hour writing this and also hacking my lungs up through painful coughs.

I had covid almost 2 months ago. Ever since, my body has been painfully weak. I get tired after standing for about 15 minutes. If I do more than about half an hour of walking, my body feels akin to times when I've pushed it past its limit, a state normally reserved for recovering from multiple hour biking sessions or lengthy fencing tournaments. My lungs are pathetically weak. When I overdo exercise, I start coughing painfully. Breathing in smoke reduces me to awful hacking coughs and makes breathing hurt for days. Laughing too hard also sometimes triggers painful coughs.

It sucks. I'm adapting slowly and learning where the limits are, and I hate them. I have to carefully budget and allocate my energy over the day. I can only do one thing in a day and usually it's not what anyone else wants me to. I was already bad at this thanks to the autism and it's even worse now. I can't do spontaneous evening jaunts anymore, usually having already spent myself to the maximum. I have to carefully strategize sex because sex is physically demanding, so if I have sex I can't really do anything else that day. I'm the weird person who has to leave the picnic early because you're smoking weed like right there and I promise I don't have any philosophical issues with weed, I just can't breath. I feel like I'm not pulling my weight in the apartment chores because standing up for too long hurts. I can't go on long walks anymore. 40 minutes of slow biking ruins me. I'm not adaptable. It sucks.

It doesn't help that I've been pretty consistent on pretending I don't have any limits. That hasn't helped at all. I moved apartments at the start of August and I pushed myself way too hard then, packing and carrying and building furniture and unpacking. Really, it took me until around now to recover and feel at all normal again. I don't really remember what I spent August doing. It kind just passed by in a fog of lying around and waiting for things to stop hurting. I didn't go biking. I didn't write or code or do game design. I just struggled to keep it together.

The people around me have been better at my own limits than I have been. The few people I've let in on this are often the first people to tell me to stop and sit and rest. But I feel like I have to catch up. Much like with autism, I still hold myself to the standard of a "healthy" person. I don't really know how to stop doing that. I hate being a burden and I hate when people are nice to me and I don't get to immediately reciprocate. I'm ungracious and terrible at dealing with presents or kindness.

People tell me that I should recover within a few months. But if anything, I've gotten worse. A lot of the evidence suggests long covid could take years or even forever to heal, with seemingly random factors determining which. Most of the studies conclude we just don't know. It hadn't been that long yet. And sadly, I cannot trust the anecdotal evidence that easily, forcing me to consider that I might be like this forever.

Besides, I don't have months to recover. I start grad school in a couple weeks, and I was so excited to do field work. So excited.

I'm anxiously awaiting the day that like with autism, maneuvering around my limitations becomes automatic. I don't know if I'll ever get there and I don't know if doing so would be good for me. The limitations would still exist. Their invisibility just causes me to hold myself to an impossible standard.

I wanted to end on a hopeful note, something about having caring friends who help me and how "coming out" will only result in things getting better, but I'm not sure I actually have that in me. I'm sad and worried and this is both vulnerable and personal and that makes posting it hard and scary. I'm sorry.

Today's link of the day is Trimps, my current idle game of choice, replacing Antimatter Dimensions, which I beat a few months ago after 180 days of work. I like to have one idle game on the go. Numbers going up satisfies me and it gives me a decent default activity.