Tag: autism

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. ↩︎

The Early Writings of John McCoy (2nd edition)

A Facsimile Edition; with commentary by the author

The author in 1974.

I published the first edition of this commentary in 1997, having just learned how to code HTML from a disreputable Usenet post. The website that this work first appeared on, ungh.com, has long ago evaporated with the rest of the Web 1.0.

Recently, however, I recalled the essay in a dream1, and fortunately I was able to find a .doc copy languishing in the recesses of a forgotten directory on a floppy disk that had fallen behind a shelf in my basement2.

It’s been nearly 20 years and the wisdom of old age3 compels me to revisit and enlarge this seminal work. So I present here the second edition, with newly scanned facsimiles, enlarged commentary, and new annotation.

A note on the text:

Fortunately for scholars, the original MSS for the works discussed here arrive to us in almost pristine condition, thanks to their having been cached in the remarkable School Days edition #566, produced in 1966 by the WinCraft corporation of Winona, Minnesota4. In addition to my earliest writings, this folio contains many other historical items, including report cards, numerous second and third place ribbons, and a certificate awarded for “knowing and making the letters correctly in the daily use of legible manuscript handwriting.”

Perhaps the most important artifact of the twentieth century.

I Sit in It

Written in Mrs. Kubasko’s p.m. kindergarten class, Harding Elementary School, 1974.

I Sit on It, #2 pencil on ruled Manila paper, 10.5″ x 8″


Text:

Jo Johl John.
IS I Sit in it
Meet me
See Mat on it

Notes:

From 1974 until 1977 I attended Harding Elementary School in Youngstown, Ohio. Although today it seems strange to me that there should have been a public school named after the second-most hated President of the United States5, at the time I was just happy to be sharing my blocks with Nora, the little red-haired girl who was my first real crush. We would almost exclusively use these blocks to design elaborate traps, which is an interest that I now recognize as one of the stranger symptoms of autism6.

I Sit in It is the earliest extant MS in my handwriting, and it demonstrates many of the themes that would mark my later work. Written in first person, the story is plotless, simple, and relies upon suggestion for its effects. The most obvious questions for the reader are: “What is ‘it’? Why does the narrator sit ‘in’ it, while Mat is ‘on’ it? Where are we to meet?” Although these questions are ultimately unanswerable, they are essential to the story’s meaning. By the promise of rational answers and the lack thereof, the reader is led, koan-like, to a new level of understanding. It is only when the familiar categories of “in” and “on” are deconstructed that enlightenment begins.

The true subject of I Sit in It, then, is the mutability of identity. Note the strikethroughs at the top of the page: Jo becomes Johl becomes John. And then, a final period after John announces the completion of the metamorphosis. But should we assume that this teleology is valid? It seems unlikely.

The Missing Bird

Written in Mrs. Wren’s first grade class, Harding Elementary School, 1975.

The Missing Bird (recto), Crayon on Manila paper, 10.5″ x 8″

The Missing Bird (verso), Crayon on Manila paper, 10.5″ x 8″


Text:

THE “MISSING
BIRD” BY John McCoy
Once there was a bird.
He had a mother. She said, “Hop,
and fly.” He hoped, and fell.
His mother cood not find him,
and askek mrs. owl. “Look behind th7
tree.” she said. and there he was!

Notes:

Mrs. Mathilda Wren, my first grade teacher, claimed to have served in the armed forces during wartime8. She also had a pair of decorative plastic mushrooms on her desk which she claimed were poisonous. The poison was so strong, she said, that a child need only touch the fungi to die a painful death. Today I believe her intentions were to keep her students’ hands off of her belongings, but the result was a horrified classroom of six-year-olds. Why would anyone keep something so dangerous on their desk? we wondered. What if we brushed against the mushrooms by accident in the midst of show and tell? Eventually, the brighter students in the class realized that the mushrooms posed no real danger, and they terrorized the rest of us by threatening to force us to touch the forbidden objects.

Some of the anxiety of this situation is no doubt reflected in The Missing Bird, a story which at first appears to be straightforward, but which reveals a sinister underbelly upon closer examination. Although baby animals are often separated from their mothers in children’s literature (see P. D. Eastman’s Are You My Mother? [1960] or Eric Hill’s Where’s Spot? [1980]), it is not so typical for the mother herself to be the author of the separation.

The reader must decide for themself whether the mother truly believes that her child can fly or if she is malicious in her instructions. The central tragedy of the fledgeling bounding forth only to plummet, Icarus-like, is vivid no matter what the mother’s motivation. The chance misspelling of “hoped” instead of “hopped” is felicitous: just as the bird, we too hope for the best as we venture into the world, only to be brought low by gravity.

Owls are traditionally figures of wisdom, but the sensitive reader will question the narrative value of the tacked-on character of Mrs. Owl. Why can’t the mother see for herself where her child is? She knows he must have fallen near the tree. Perhaps the mother isn’t really looking.

The Restaurant

Written in 1976 or 1977, location unknown.

The Restaurant (recto), #2 pencil on white Kraft paper, 8″ x 10.5″

The Restaurant (verso), #2 pencil on white Kraft paper, 8″ x 10.5″

Text:

There was a restaurant where a man
who sold pencils would stop every
day to eat breakfast. And all the
morning he would shout out loud to
him self as if he wanted everyone
to hear. There was also a threesome
that had a favorate table to eat
at. To day, however, as they where sitting
down, they noticed a lady 6′ tall,
long-black haired, coming in. They
shuffled around nevously, collecting
cups, plates, and silver ware, and sat down
making it appear as if they just had
breakfast. Then, the lady sat down
drank half a cup of coffee, and
then began talking to herself.
Not outloud, like the pencil-
man, but in a soft murmur.
The threesome left by the
backdoor. And even after the
tabe was wiped & cleaned, the
lady still looked on, still
clutching the half-emty
cup. The pencil-man glanced over,
saw the lady, and ran out the
door. The lady soon left.

The next day, the threesome had
just finished breakfast when the lady
came in. They left. The lady spotted
the pencil-man talkig outloud and
went to the chair next to him. “It’s
to cold outside! The birds are
freezing, dam9 it!” said the pencil-
man. “I know nobody wants to, but
somebody’s got to feed the birds!”
“May I have some tea, herald?” asked the
lady. The man grabbed the teapot,
poured the lady some. “I ain’t nobody
named herald,” the man said.

The next day the man & woman
came together. The threesome left
for good. The man & woman began
to talk together. They left and moved
into an apartment together wher
all the do is tall softly to one another.
And the restourant will never be the same.

Notes:

No writings save for notebook pages of cursive handwriting practice remain from Mrs. Vernarsky’s second grade class, which is a shame, because that means I won’t be able to point out that Mrs. Vernarsky had an enormous beehive hairdo (except in this sentence). When I try to remember what I wrote in her class, all I can remember is being caught drawing “Big Daddy Roth”-type hot rods, the kinds with monsters and big chrome exhaust pipes10.

The author in 1976. Happy Bicentennial!

Even if there is no surviving literary record of my second grade year, its importance to my personal development should not be underestimated. It was in the second grade that I was found to be nearsighted, and the resultant eyewear immured me from my playmates. Oh, they still traded their Now ‘n’ Laters with me, still dropped their Scooby-Doo valentines in my box, but dodgeball was forever changed.

It’s informative to look at a report card from this time. While I always got good marks for “Health Habits” I was slipping in “Rules and Regulations,” “Respects Rights,” and the notorious metric of “Plays Well With Others.” This, then, was the beginning of of my Bad Boy phase:

Small wonder, then, that alienation should be the major theme of The Restaurant. None of its characters are able to communicate with one another, preferring instead to shout or murmur nonsensically—or, in the case of “the Threesome,” to abstain from discourse entirely. Although I cannot recall my initial conception of The Restaurant, its obvious models are Sartre and Beckett, perhaps by way of a particularly bleak skit on Zoom. 

For example, the ostensible protagonist, “the Pencil-Man,” craves attention from an indifferent world, but is paralyzed by his own incompetence. “Feed the pigeons,” he admonishes, but why doesn’t he just feed them himself? Surely there is complementary bread at the restaurant. At least the Pencil-Man is given a possible motivation by the narrator: he wants somebody, anyone to hear. When “the Lady” makes her appearance, she is described objectively, blankly, as though she were a suspect in a police line-up: “6′ tall, long-black hair.” But what is her crime? Merely her attempt to connect with another human. “Herald,” she calls the man, and in the misspelling we may see the Pencil-Man as John the Baptist, another abrasive hairy man who shouted a lot. The Pencil-Man, however, is unwilling to take the role of martyr; he instead offers tea, as though a participant in a Zen Buddhist chadō ceremony. Thus we see the contrast between Western and Eastern paths to transcendence.

Although they strike up a relationship, romance does not seem to be a remedy for the alienated Pencil-Man and Lady. Theirs is a sexless relationship, in which all they do is talk softly to one another. This would seem to indicate communication, but it is a communication devoid of either action or context. How will they survive? Who will sell the pencils?

Perhaps the most enigmatically fascinating characters of all are “the Threesome.” In contrast to the narrator’s clinical portrayal of the Lady, the Threesome are given no description, not even to differentiate them from one another. Are they men or women? Are they lovers? Why are they so threatened by the arrival of the Lady? Possibly they represent dissolution of identity, the generic, interchangeable personality of Late Stage Capitalism. If so, their aversion to the Lady makes grim sense. The Threesome attempt to absorb the Pencil-Man into their hive mind, only to have the Lady encourage his eccentricity. Theirs is the true tragedy of the story, as they are unable to even enjoy their breakfast, preferring the imitation of eating to true nourishment.

And the pigeons? What of them?

  1. Not really, but it sounds poetic. ↩︎
  2. This is a bald-faced lie. Why would I even write such a thing? ↩︎
  3. Not a lie per se, but stretching things. ↩︎
  4. Still in operation as of 2025, although these days as a purveyor of sports memorabilia. ↩︎
  5. As of 2021, Harding is only the third most hated. ↩︎
  6. This correlation is posited in some versions of the self-administered “Aspie Quiz,” see https://rdos.net/aspeval/#925 ↩︎
  7. Unclear whether the “e” was omitted intentionally or if it was drawn on the table alongside the MS. ↩︎
  8. Vietnam? Korea? WWII seems unlikely. Most likely of all was she was fucking with us dumb kids. ↩︎
  9. Such fire! ↩︎
  10. This was when CARToons Magazine was at the height of its popularity and there always seemed to be an issue being passed around by the boys in class. Looking back, I am confused by my interest here because I have always been indifferent to cars. But I do like “Big Daddy” Roth.  ↩︎