Tag: autism

Brave New World

This essay is about autism, so bear with me through the roundabout introduction. Disclaimer: while I make a lot of general claims about people with ASD, I can really only speak about my own experiences, and then only in confused and broken sentences.

From my freshman to my senior year in high school I was on the Scholastic Bowl team. If you are unaware of what this is, because you spent your youth doing cool stuff like playing actual sports or making out in cars, I will explain. Scholastic Bowl is a varsity competition for nerds, where two teams of four players represent their schools by being the first to buzz in and correctly answer questions posed by a moderator, quiz-show-style. It’s basically “University Challenge” from that one episode of The Young Ones. It purports to be a measure of academic knowledge, but the questions are pretty much bar trivia about the humanities and STEM.

This was a game that was basically made for teenaged John, and it’s not hyperbole to say that I pretty much carried my team: I answered around 80% of the questions and usually buzzed in early—that is, before the moderator was done reading the question. It’s not that I was smarter than my teammates, it’s that I had weirdly eclectic interests and an ability to retrieve facts from my memory with speed and precision (I have lost this skill in middle age).

For an activity that took up so much of my teen years, I recall no specific matches, but there was one question, and my answer, that I remember lucidly. It was toward the end of a match that was nearly tied, and the score was making me tense and focused. The moderator asked the toss-up, “who wrote the New World Symphony?”

I buzzed in immediately and responded, “Dvořák.”

The moderator looked confused and peered down at his question card. “Could you repeat that?” he said.

“Dvořák,” I repeated.

He examined the card a few seconds more and then said, “I’m sorry, that’s incorrect. Would the other team like to respond—”

I loudly interrupted: “Is that spelled dee vee oh, ar-with-a-caron ay-with-an-accent, kay?”

Everyone in the room was taken aback; a student reprimanding a moderator was a completely out of order. “Because that’s pronounced duhVORzyahk. It sounds like it has a Z, but it doesn’t, so you must be reading it incorrectly.”

I suddenly realized that my coaches and teammates were staring at me like I had done something wrong, so I added in a softer voice, “because it’s a Czech name…”

Strangely, while this exchange is etched in my memory, I don’t actually remember whether we got the ten points for a toss-up or not.

I tell this anecdote neither to flex about what a precocious kid I was, nor to admit that I was an incorrigible smartass (both of these are true). My point here is to illustrate the way that autistic people’s minds work. We tend not to pay attention to authority. We are very committed to the idea of truth; we are also committed to the idea of justice—these two positions are intertwined. This insistence can (and does) lead to black and white thinking about things that aren’t black and white, but it also means a belief and fealty to objective truth and fairness.

I don’t mean to imply that autistic people can’t prevaricate. There’s a popular truism that ASD renders one incapable of lying; this is ridiculous and implies that we are a fantastical race of fairy children, magically bound to speak truth. It’s more accurate to say that we aren’t willing to lie for the sake of politeness or to make someone feel better. If someone asks me how I’m doing, or if I like their haircut, I’m going to tell them, even if they really weren’t looking for a straight answer. It would feel inauthentic to do otherwise.

Likewise, an autistic heightened concern for fairness—what psychologists call justice sensitivity—is also tied to our sense of integrity. Good faith and equal treatment matter a lot. At its best, justice sensitivity motivates care for others and the questioning of social conventions. However, it can also lead to a rigid and judgmental outlook, and when this is paired with an indifference towards hierarchy, the outcome is know-it-all punks like me ill-advisedly sassing the very people who give out the points.

But, to be fair, the New World Symphony really was written by Dvořák.

Yeah, it’s called a disability

I got my autism diagnosis at a weird time: about a month and a half before the Global Pandemic. One day I was learning why I isolate myself, the next day the whole world was isolating right along with me. During the following year of lockdown and social distancing, many housebound folks, mostly young adults, turned to inward reflection, mostly in the form of obsessively Googling psychological disorders (perhaps at the behest of whomever was trapped in the same apartment with them). This in turn resulted in a wave of self-diagnoses of Autism Spectrum Disorder, and of online communities promoting awareness and proclaiming the legitimacy and strength of autistic minds.

Around the same time there was a host of television shows starring autistic people: Love on the Spectrum, As We See It, Everything’s Gonna Be Okay, Extraordinary Attorney Woo, Patience. There have been novels like Everyone in This Room Will Someday Be Dead, which doesn’t explicitly say that its protagonist is on the spectrum, but it’s pretty obvious. Autistic creators exploded on YouTube. The sheer variety of new representation stood in contrast to the dominant stereotypes of Rain Man and The Big Bang Theory.

Like I said, it was a weird time to get a diagnosis. I found it strangely comforting that my disorder landed me at the cool kids’ table. I’m not really a joiner, and I had never been part of a zeitgeist before. But with the movement came a backlash from skeptics who questioned whether all this generational tism was real, or just a validating bandwagon for the chronically “quirky.” This was mixed in with class and race issues, as many saw the trend as a white, middle-class thing. A whole genre of you’re-not-really-autistic videos emerged on TikTok, and there’s even a SubReddit called FakeDisorderCringe in which users accuse and mock people allegedly feigning neurodivergence to get attention.

Along with all criticism from outside the autistic community there has been a major divide within. On one side there exists an autistic cohort believes that their neurology should be recognized by society-at-large as legitimate and even beneficial. These have maxims like “autism is a super power.” On the other side, caregivers for those whose autistic presentation that renders them non-verbal, shut off, and otherwise incapable of self-support feel that “autism chic” belittles their painful experience. The discourse can get pretty heavy, and communities who would seem like natural allies are instead entrenched combatants.

I have some sympathy for both groups. For those us with “high-functioning” ASD (like me), we may be happy with ourselves as we are, we also deal daily with the stress of a world not made for us. It makes sense to look for not only accommodation but also for appreciation. It’s only been very recently that the clinical definition of autism has been broadly enough applied that most of us could even understand who we are. And that’s liberating, and worth celebrating. But when autism comes with extreme care needs—what many people still label as “real” autism—that is a real burden and a real loss, and beyond deserving empathy and systemic support, caregivers should not be faulted for mourning. (This doesn’t excuse those who credulously believe pseudoscientific claims about vaccines or Tylenol.)

As for me, I was labeled a “gifted” child in grade school and got put ahead in math and art. Also teachers let me get away with a lot of nonsense. I have had more intense and rewarding interests than would fill many lifetimes. I am a quick learner and eager to learn. I notice small things that others miss or making connections that others find insightful. But also: I have trouble staying close to friends and even to family. I can be oblivious to the most obvious social cues. If something doesn’t interest me, I can’t make myself remember it. And I can be rude or hurtful to people and only realize later. So is autism on the whole a plus or a minus? Is it an alternative way of thinking, or is it a disorder, like the DSM-5 names it?

Since my diagnosis I’ve read quite a few books on autism and they can be broken down into three categories: memoirs of autistic people, particularly those who got a surprise diagnosis (you’re reading one of these right now); therapeutic or self-help guides, some written by psychologists and some not (these can be full of dicey advice); and the rare book that examines what Autism with a capital A means, socially, aesthetically, or even teleologically.

One book I found engaging, but also frustrating, is the academic monograph Authoring Autism: On Rhetoric and Neurological Queerness, by M. Remi Yergeau, who teaches at Carleton University. This is a dense book, not for the fainthearted. Yergeau’s subject, as given in the title, is what they call the “rhetoric” of autism. And here I have to be very careful in what I write, because “rhetoric” is a complex subject with specific and varied meanings in philosophy and linguistics, and because my wife literally wrote a book on the subject. (I myself am not a philosopher and have a tendency to use a word to mean “just what I choose it to mean.“)

Yergeau uses “rhetoric” in the sense of “the manners of communication used by a cultural group,” and their contention is that while autism has traditionally been seen as a barrier to interpersonal connection, autistic behavior (even when non-intentional) is in fact its own set of social rules that challenge assumptions of what is effective, or even permissible, expression. This makes autism analogous to queerness, which likewise stands as a counter to mainstream assumptions of the borders of gender and sexuality. And if this paragraph makes your head hurt, then I’ve successfully duplicated the experience of reading Yergeau.

This book is helpful to me, if only for a feeling of validation. I have often felt that my inability often to convey the state of my head or my heart was more a matter of a lack of understanding on the part of whomever I’m talking to than a defect on my part. There are times when there is no good way to describe the feelings I’m having because allistic society never made the right words. But I don’t know that I’m fully on board with Yergeau. I remain unconvinced that my stims are an expression of my culture, or that my inability to look someone in the eye is simply an alternative mode of discourse. Some things are simply flaws.

Everything is relative. From an autistic standpoint, “normal” comes with its own pathologies. To play autistic devil’s advocate: normies don’t know how to plainly say what they mean, but they get offended when you don’t take their opaque hints. They lack the ability to passionately engage with an interest and instead of being authentic they follow trends. They are needy and their feelings are easily hurt. They can’t handle being alone for long. I could go on.

Would I change myself to be not autistic if I could? No, of course not. It’s built so deeply into how my mind works that in its absence I would be a completely different person. I like many things about being autistic. But autism’s not all trains and dinosaurs. It’s also anxiety, and isolation, and an inability to choose what to watch next on Netflix.

Speaking of which: the original Love on the Spectrum was an Australian production and was only later given a U.S. version. (Netflix retroactively calls the original series Love on the Spectrum: Australia, which, first of all, rude.) While I have mixed emotions about the show, there is one scene from the Australian version that has been stuck in my mind since I first saw it. There was a participant, Olivia, who was a member of a theatrical company for people with disabilities. During one break in a rehearsal of A Midsummer Night’s Dream her director called her out for joyfully jumping around on stage, and she defensively replied “Yeah, it’s called a disability.”

And that’s the thing. ASD brings joy and shame, jumping and hiding. It’s a blessing and a curse. In that way, it’s just like being human.

Out of touch

Getting a psychiatric diagnosis affects everyone differently. For many, it’s a catharsis, a key to self-discovery and self-acceptance. For others, it can be a troubling albatross, a confirmation that in some basic, inescapable way you will never quite fit in, not matter how hard you try. But one experience almost every newly diagnosed person shares is searching their memory for the clues to their condition that were missed, but now seem obvious: for all the past embarrassments, conflicts, deviations, and social failures that now have an explanation.

My first few weeks after being diagnosed with Autism Spectrum Disorder were full of denial. I told myself that I couldn’t be autistic because 1.) I was highly verbal; 2.) I didn’t have any sensitivities to the textures of fabrics or the sounds of chewing; 3.) I thought of myself as empathic to a fault, feeling shame for people who didn’t feel it for themselves; et cetera. But slowly I realized that none of this was cut-and-dry.

For example, I definitely have a lot to say (too much sometimes) when I get going on a topic that interests me, but I am super hesitant to talk with people I don’t know—and often even people I do know. I can talk too loud, I can mumble, I can stutter. I have to remind myself constantly to take turns with my interlocutors. And while for the most part I don’t have sensory issues, such as an aversion to anything but my favorite foods1, but often when I am wearing layers in winter I have a sudden claustrophobic reaction and need to tear everything off at once. And while I may feel empathetic, I have a very hard time expressing it, to the point that a lot of people assume I am blowing them off.

Then there are some dead giveaways that should have tipped me off much sooner: my many stims, the oddest and most off-putting of which is my constant desire to rub my feet together; my ability to develop any number of special interests and to flit from one to another; and my tendency towards living entirely inside my head. I learned from my mother that when I was a little boy I would sometimes drift off into an unresponsive reverie and she had to shake me by the shoulder to get me to focus.

So long story short, I eventually accepted (though didn’t embrace) my disorder. It has become painfully obvious to me that if ASD had been viewed with the more expansive eye of contemporary psychological practice, I would have been diagnosed much sooner, which might have given me tools to fake that eye contact that neurotypicals seem so keen on for some inexplicable reason2. This broader classification has led to more late-in-life diagnoses such as mine, as well as significantly more childhood ones, and is the obvious reason that reported ASD cases have greatly increased over the last decade, so RFK Jr. can go pound sand.

Eventually I worked my way through denial, bargaining, and depression (skipping over anger because I’m such a cool-headed guy3) and found my way into acceptance, however. By this I mean, paraphrasing Alan Watts, I started to become what I am. I embraced my obsessions, even the nerdy ones like math that I had tamped down so as not to bore people at parties. I found times and places to space out entirely and stim in all my weird ways. And I recognized a somewhat painful truth, which is that I don’t really like to be touched.

(This is where I assure my wife that I’m not talking about her. I have always loved her touch.)

What I am talking about it the various social ways people used handshakes, hugs, and (ugh) encouraging hands on shoulders. This had become a problem for me in the 2000’s because there was a growing norm that when you greeted people, or were greeted, you were expected to hug. Even men were often expected to hug other men, and it felt like a minefield to me. I was never sure how long or how hard I was supposed to hold on, and how to not be creepy about it, and it caused a lot of stress. My liberal self was glad that men were letting go of gay panic, but my autistic self was dying inside.

Two things happened that saved me: The #metoo movement brought scrutiny to previously tolerated behavior. And then there was the pandemic, which had even more of an effect. Over the course of a few years hugging became less and less prevalent, although there still are huggers out there, you just have to watch out for them.

Anyway, a couple of years ago, we got a dog, Hunter (see header image). Hunter is a large and muscular dog, half German Shepherd and half Catahoula (if you don’t know that breed, neither did we). He can look intimidating, and will bark fiercely at anyone with the temerity to deliver a package on our porch. But he is also a big softy and will snuggle up with any of the family (and strangers that we bring inside without his noticing). And he will vigorously lick, by which I mean he gets his whole foot-long tongue involved, and will stick it down your ears and your nostrils and anywhere else you don’t actively discourage him from.

And the weird thing is, while this seemed all too much at first, I became able to stand it. I told myself that Hunter needs to be able to express affection in his own language, and that whatever my personal reaction was (which was ick), this was something I could do for him. And herein lies the truth that I’m sure is obvious to neurotypicals, but which eludes many with autism: when you do something for someone you love, you can put up with a lot.

And so this is the blindingly simple life hack (again, ick) that I have learned from my dog. And while I don’t know if it will help me to hug any better, I’m all set the next time a four-legged friend greets me with their tongue in my face.

  1. I even have a great fondness for unpopular flavors like licorice, cilantro, mushrooms, olives, pickled herring, etc. ↩︎
  2. Honestly, guys, what the hell is this “windows of the soul” nonsense? Learn how to say what you mean and you’ll never have to guess what’s in someone’s head. ↩︎
  3. This isn’t remotely true. ↩︎