Autism Spectrum Disorder

 By: Chris Peverada

Ok, this is long. I’m sorry. But I got going and it just kind of spilled on out. Does that ever happen to any of you? Where something is so interesting or engaging that you can talk or think or write about it or do it for hours or days at a time? Obviously I have.

April is National Autism Awareness month. I always thought “awareness” of anything was a weird cause to get behind. In my head, awareness is knowing that something exists, or is a certain way. Or knowing that certain things have happened, or people have certain preferences. When we use it in the context of something like a minority condition, or a disease or disorder, it almost feels like it’s being highlighted as a problem we can all solve together. Let’s end world hunger, discover a cure for all the cancers, prevent domestic violence, and treat autism!

That sounds great, right?! To me, not quite. For I am indeed autistic. I’m what a lot of people might call high functioning, or low support needs, or they might say I have Asperger’s Syndrome or am neurodiverse. If I have enough energy, a lot of people won't ever notice, and some might strongly deny it. So why don’t I like the dialogue around Autism Spectrum Disorder that I so frequently see?

First, I will say that I have so, so much cognitive dissonance surrounding this. ASD has given me so much trouble and changed my life in ways I’d rather it didn’t. At times I desire more than anything to be “normal” (whatever that is). To not have completely reasonable (to most) levels of light and sound occasionally shut my brain down. To be able to come closer to understanding why friends, family, and other people do the things they do. To have had anything I could call a normal, adult dating or romantic life before this point. To not have the communication breakdowns I so often do. To be able to identify and describe my emotions, of which there are a lot, and very strong ones, despite the ASD stereotype. To not have executive dysfunction to the point I can’t do dishes, laundry, or vacuum for months at a time, let alone complete more important tasks that affect others. To have people understand that when I express a preference or ask a question, I really do mean it. Hell, even to have all of my friends and family believe me about what it’s been like would be a win.

Despite all that, there are aspects of ASD I could say I even enjoy. I get an inordinate satisfaction from intense tastes like the bhut jolokia, or deep pressure touch sensations like hugs. I’ve lucked out with a pretty good memory (you will probably not beat me at a general knowledge trivia competition). The emotional attachments I have are very, very strong, from what I understand. Certain animals or even inanimate objects for me can feel like they are a life partner. When it comes to quick, scientific thinking, well, just ask me about how I saved my phone from the bath (seriously, ask if you don't know. It's a good story). And when something earns the distinction of being a “special interest” of mine, such as Jeopardy!, karate, Star Wars, or LEGO, the mileage I get out of it is Voyager space probe level. Which with beer was a bit dangerous I suppose.

Speaking of mileage and special interests, though, and since this is the DTC blog, let’s talk about running. I’ve run a few miles in my lifetime. Currently, I would not put it in my special interest category, but it has been there before, and for quite a while. It has a lot going for it. Repetitive bilateral stimulation. The feeling after a long run or good VO2 track workout. Races where I could beat people, or make the people near me work for it. Getting away from the noise and light that can trouble me. Time to listen to audiobooks. Making my dog happy.

When I moved to Albuquerque, it gave me a default but amazing group of built-in friends with the Dukes Track Club. Honestly, with as long as I’ve lived here, some of them are the longest-lasting friends I’ve had in my life, in terms of actually staying in touch and doing things with them. And really, at each stage of life, middle school on, my best and closest friendships, and any friends from long ago who I’m still in contact with, have been found through running, directly or indirectly.

When I mention running as a special interest, it extends beyond just knowing about it. Sure, I could tell you off the top of my head who won gold in the mens’ 100m, 200m, and 400m in the 1924 Olympics, and even who got 6th in the steeplechase that year (thanks Chariots of Fire). But the special interest also involved the actual activity of running, and not just running as a sport with facts and figures I could memorize. Between starting cross country in 8th grade and running my last race in college, I went from a 28+ minute 5k to a sub 25 minute 8k.

Where did this improvement come from, you ask? Autism. Well, I guess not directly, but that’s a legitimate answer. With running as my special interest for so many years, I had absolutely zero problem sacrificing sleep and a social life by waking before sunrise for morning runs or running 12 miles in cold, dark, Chicago after a 4 hour physics lab. I logged more miles every week, month, year. But a lot of college runners do, don’t they? After college, without a coach to constrain my training log, my mileage climbed to a bit over 140 miles per week before my first marathon. But then I heard about a local 24 hour race. 24 hours around a one mile loop, going as far as you can in that time.

To me, that sounded like the perfect race setup. I’m someone who can do the same running route every day, even twice a day, and never get bored of it. I’d noticed that the more miles I did in training, the faster I got overall, and I also noticed that I never got injured. I signed up without even thinking about it, just knowing that the training would be no problem. And it really wasn’t. I was working on my MA thesis, running, and eating. My only local friends at the time were people I knew from running, of course. I still have no idea how to make friends outside of that. The ASD tendencies really took off, and I was running 200 mile weeks. 10 in a row, with a peak of 229, with tempo runs and VO2 work the whole time. That year I took 2 (entirely planned) days off, and logged over 7000 miles. 134 miles per week average, to save you the math. A slight bit more than the average post-collegiate.

Because running was so damn interesting to me, I could devote hours everyday to that and nothing else. My thesis sure as hell wasn’t as interesting at the time. I ran without music, for the most part without training partners. I’d play anime theme songs in my head, or imagine using the secret move someone had busted out in the latest episode of One Piece. Or I’d just not think at all. It didn’t matter. The running was enough, and I was content with just that.

I have other special interests at the moment. Watch an episode of Jeopardy! with me and you’ll see (I boycotted Dr. Oz’s episodes though, because fuck that guy). ASD doesn’t mean I can’t change, or I’m forever a child, or anything like that. It means my nervous system is wired a bit differently. "Neurodiverse" is a great term for this that has gained a lot of traction. It encompasses autism as well as other neurological differences from the norm.

In some, I realize neurodiversity can be debilitating. In me, it’s hit or miss. The “miss” can be small-ish and something anyone would experience at some point, like getting overly annoyed at a lack of communication from a friend or significant other. Or at someone being late, or canceling last minute. It can be large, like not even being able to talk if an environment is too loud or bright, or if I'm made the center of attention. It can be weird, like having to use “stimming”, basically a repetitive, stimulating behavior, like flapping hands, running, or chewing my shirt, to self-sooth. “Masking” is a term some use to describe the efforts neurodiverse people make to try to fit into the world, and hide these misses.

I kind of think of masking as a form of integral calculus: I can calculate a whole bunch of tiny rectangles to approximate the area under a curve. Depending on my mind state, the rectangles can be really thin and I can get extremely accurate, or maybe I only get one or two rectangles, am way off, and have a shutdown in public or private. There are proven links between frequent masking and increased rates of depression, anxiety, and suicide. Neurodiverse people are 3-15 times more likely than the general population to die by suicide, depending which study you read. Masking for basically my whole life so far has been tough at times. I won't give specifics, but you can put it together based on what I just mentioned. And masking is not something I’m ever going to be able to completely stop.

If you’ve read this, these are all things you’re now aware of. Yay awareness. You know about these things. But there’s one more step I and a lot of people in the neurodivergent community see as more important. It could apply to so many other communities too. Is it to help look for a cure? To donate money or time? No. It’s not. And there are some organizations out there pushing such things quite a bit. As I wrote earlier, I have a lot of cognitive dissonance when it comes to my neurodiversity. But without it, who would I be? I really have no idea, and the thought that I would have been a completely different person if there was a cure or treatment is scary.

Instead of simple awareness, or certain well-intentioned, but to me, misguided, efforts, I’d ask anyone who reads this to practice acceptance. Basically, don’t judge me, bro. Yeah I am a bit weird, or different. If you get me talking about Final Jeopardy! wagering theory, I’m sorry. I hope you don’t have anywhere to be. And if you’re someone I keep sending pictures of “that guy” to, sorry again. Don't open links from me at work. But with so many of the typical neurodiverse tendencies, I’d say, so what? I’m chewing my shirt, not yours. And I’m sure lots of others, neurodiverse or otherwise, and probably almost everyone actually reading this, would feel the same.

Things that are different can be unsettling. For neurodivergents, most everyone they run into is different than they themselves are. For some, the difference is debilitating. In those cases, I’m not sure what I’d propose. It’s not like this is an easy question. But for those of us who are "just" at a higher suicide risk but can otherwise mostly-kinda-sorta mask it, widespread acceptance would turn the world into a more friendly place. Remember that the effort you put in to understand and accept a neurodiverse person is the effort they have to put in for almost everyone they meet. If the effort is too much, I get overloaded. Then, a few things can happen. I might get grumpy, distracted, or frustrated. I might stop talking for a while. I might go hide in a quiet, dark room or find the nearest dog to hand out with.

So how can you, personally, be an accepting ally? Don’t just accept me when I’m carrying your Geeks Who Drink team, basically. Accept me when I’m having a shutdown. Accept me when I don’t understand something or your thought process confuses me. Accept that when I describe my how I feel that it really is like that, and my feelings really are that intense. Accept that noises or combinations of noises can be troubling to me in a way that you’ve likely not had to deal with. Accept that if you cancel an appointment last minute, it will bother me a lot. Accept that I’m not getting upset or triggered randomly. Accept that I’ve always been this way even if you’ve known me my entire life and didn’t think it was possible. Accept that things like judging someone by their handshake or how they match their clothing to the situation will never make sense to me. Also, accept that just like there are so many different types of personalities in neurotypical people, not all of us with autism are cut from the same cloth. We don’t all have trouble with the same things. We don’t all like the same things.

I’m not one to regulate language. Call it neurodiversity, autism, whatever. The DSM-V calls it ASD. I personally don’t care that much. As a linguist, grammar Nazis aggravate me. Really, Nazis in general piss me off. But still, for my own personal reasons, built from my own personal experience, I’m not celebrating or shouting out about Autism Awareness Month. Acknowledging, sure, but I hate shouting and raising my voice. And attention I'm not mentally prepared for. I really hate that. Also, awareness movements, to me, have a connotation of curing a disease, ending an injustice, or similar. And yes, something is different about me. And I sometimes really, really, wish it wasn’t. But if that difference isn’t there, I don’t run 200 mile weeks. I don’t meet the Dukes. Bedford Falls becomes Pottersville. And there really isn’t a me at all.

Finally, my ASD is professionally diagnosed. Not every neurodiverse person has that luxury. To me, this is a hugely pressing reason for as many people as possible to be accepting of neurodiversity. Lower-support-needs forms of ASD weren't widely known or diagnosed until the mid '90s, and by then, a lot of now-adults were too old to be spotted via the traditional, child-centric diagnostic criteria and had learned to mask. Even if they were diagnosed, most resources are directed towards children with autism or parents of those children. But that's another issue. Anyway, I'm not saying every socially awkward cross country runner is neurodivergent. Just that we should try our best to be accepting of the neurological differences we encounter during our lives, even if we don't have an official label for someone. But for real, don't travel. COVID-19 is still a thing.

 

The most useful locally-centered site I’ve found has been https://nmautismsociety.org/, the New Mexico Autism Society, for anyone wanting resources beyond my rambling. I guess my final note would be to remind everyone that people with ASD don’t grow out of it. There is very little out there in terms of resources for adults with ASD, at least in comparison to what’s there regarding children or families of children. It does exist, though, and that site is a good starting point if you search around.