Confessions of a Masked Autistic
How discovering I have autism reframed my entire life
Let’s get this out of the way right up top:
Last summer, at the age of 36, I found out I have autism a.k.a. autism spectrum disorder (ASD) a.k.a. I’m “on the spectrum.”
Specifically, I’m a “masked” autistic a.k.a. a “high-masking” autistic a.k.a. a “high-functioning” autistic, although I reject the use of that latter term (as do many other autistics) because the reality is I don’t “function” any better than any other autistic person.
What I am better at doing — in comparison to what you might call a “stereotypically autistic” person — is pretending that I don’t have autism.
I can look people in the eye (even though it’s uncomfortable for me).
I can carry on conversations (even about topics I have zero interest in).
I’ve been able to hold down jobs — and even excel at them — in fields I didn’t give two shits about (marketing software, anyone?).
I can — most of the time — stop myself from smashing my head against the wall when I’m upset (despite regularly feeling the urge to do so).
In striving to appear “normal,” I can, and have, force(d) myself to do these things.
That’s what masking is.
And after 30+ years of practice, I’ve gotten so good at masking (a.k.a. “camouflaging my autistic traits”) I can guarantee there are at least some people reading this right now thinking to themselves:
“There’s no way he’s autistic. He’s probably just exaggerating. Or being dramatic.”
To which I’d say…
Go fuck yourself.
Sorry, kidding.
(Well, half kidding.)
At the same time, I’m sure there are people, especially people I’m close to — or more likely, were once close to — who are reading this thinking: “Well, that fucking explains it.”
And that’s exactly the reaction I had after taking the Camouflaging Autistic Traits Questionnaire (CAT-Q) and scoring off the charts. (Incidentally, I was always a good test-taker.)
Before discovering I have autism, I would often ask myself the following questions without ever being able to come up with satisfying answers:
- Why do I dedicate hours and hours and hours of my time to special interests that I’m embarrassed to talk about?
- Why have I smoked weed just about every day for nearly two decades to the point of making myself ill? (More on that later.)
- Why do I feel the urge to get drunk (an urge I’ve often followed through on) every late afternoon/evening?
- Why, in social situations, do I often drink alcohol in excess?
- Why do I look younger than most people my own age (in spite of my decidedly unhealthy lifestyle)?
- Why do I get so riled up when discussing thorny moral, ethical, and/or social issues?
- Why do I find it so easy to write my thoughts down and so difficult to say them out loud?
- Why does it bug me so much when people ask me how I’m feeling or what I’m thinking about?
- Why do I imagine future conversations and try to plan out what I’ll say to people hours, days, or even weeks in advance as if I’m writing a script?
- Why does it take me so goddamn long to craft responses to texts and emails?
- Why do (unexpected) loud noises and (other people’s) loud music bother me so much?
- Why do I often feel depressed when I can’t pinpoint a reason for feeling depressed?
Discovering I have autism was a double-edged sword. On the one hand, I finally had a single, elegant answer to all of these questions — although perhaps “elegant” is the wrong word. Because on the other hand, I was horrified.
I was no longer “normal.”
There was something wrong with me.
Or at least that’s how I felt in those first few days after “acing” the CAT-Q.
Fortunately, my wife was there to help me through it, and to gently remind me that she always knew I wasn’t “normal,” that I always had “a darkness,” or something, lurking inside me.
I thought for a while I might have bipolar disorder, but I never sought help. One time, after a particularly bad alcohol-induced blackout, I reached out to a substance abuse specialist but never followed up to schedule an actual appointment. I dreaded the idea of talking to a professional, or to anyone, for that matter, about my mental health — a dread I only recently got over.
Autism was also on my radar as a possibility before taking the CAT-Q. I knew I had a lot of the symptoms. My wife and I would even joke that I could go into “autism mode,” wherein I would focus so intensely on a task that the outside world would seem to melt away.
But because I didn’t know what masking was yet, I assumed my ability to socialize (regardless of the discomforts associated with it) disqualified me from being autistic.
What’s more, I didn’t have a solid understanding of what “stimming” (a.k.a. self-stimulatory behavior) was all about. I assumed, incorrectly, that stimming only included repetitive movements, like rocking back and forth and hand-flapping — behaviors often associated with “stereotypical” autistics.
Turns out, vocal stimming is a thing. And it’s a thing I do all the freaking time.
When I’m aggravated or stressed or stuck in a pattern of negative thinking that I can’t break out of, I sing. Sometimes it’s a simple “la, la, la.” Sometimes it’s a line of a song. Sometimes it’s repeating what someone’s just said in a sing-songy voice.
I should clarify that everyone can exhibit some of the behaviors I’ve discussed above. It’s the convergence or comorbidity of those behaviors that may indicate someone has autism.
I should also clarify that you can’t “catch” autism. It’s not a disease — it’s a neurological and developmental disorder. And despite what shitheads like RFK Jr. might tell you, there is no evidence linking autism to vaccines.
While factors like having older parents, infections during pregnancy, and a difficult birth can all increase one’s odds of being born with autism, by far the most significant factor associated with autism is genetics. Autism is highly heritable, i.e., it runs in families.
Risk factors aside, the bigger takeaway here — at least for the purposes of this story, or whatever the hell this is — is that autism is something you’re born with.
It’s something I was born with.
And looking back, the signs were always there.
A Portrait of the Autistic as a Young Man
A few years back, a family member told me something along the lines of:
“Erik, you were super weird as a little kid. We were worried you’d never be normal. Luckily, you grew out of it.”
What my family member was effectively describing (without knowing it) was me learning how to mask my autism.
One only need look at a picture of me as a kid with my clunky glasses (that I picked out), complete with neon pink and orange strap/croakies (also my choice) wrapped around the back of my big, giant head (large heads are common among autistics, FYI) to see that I was…different.
Of course, there are stories to go with the visuals.
I’m regularly reminded of how, as a little kid, I didn’t like holding people’s hands when crossing the street, preferring instead to “hold my own hand.”
I’m also regularly reminded that I was not a fan of having globs of cream cheese on my bagels or English muffins; I preferred my cream cheese spread smooth.
Eventually it was ingrained in me that “normal” boys didn’t wear neon pink and orange eyewear straps. Nor did they make special food requests, lest they be seen as difficult.
In retrospect, my whole childhood was spent trying to appear as easy-going and as non-confrontational as possible. This presented to a lot of people, I’m sure, as me being a teacher’s pet — at least in the classroom. But the reality is classroom rules were well-defined and thus easy to follow; a godsend for autistics.
Outside the classroom was trickier.
In the second grade, I got sent to the principal’s office for coming up with the rhyme, “Girls really smell / they should go to hell.” Admittedly not my best work.
We — a gaggle of boys — had been trading silly rhymes at the lunch table, and I was sure my rhyme was going to kill. And it did! Then some little asshole (I forget who it was) ratted me out for using a naughty word.
The principal gave me a stern talking to but otherwise there were no consequences. It was the first time I had ever gotten in trouble at school. Certainly, it was “out of character” for me.
Only, of course it wasn’t — I was a little brat just like everyone else. It was just that usually I did a better job of hiding my brattiness, of being the student teachers expected me to be.
In that instance, I had let my guard down. I had misread the social cues.
I had messed up with my masking.
This would become a recurring theme.
In middle school, the superintendent of schools once called my parents because of an essay I wrote on the nature of freedom, in which I boldly declared that I only really felt free when my parents weren’t home and I could do whatever I wanted, regardless of how dangerous or stupid that might be. I went on to argue that people can only achieve true freedom when they’re dead — a sentiment I still stand by.
Anyway, my teachers sat me down for a chat and quickly concluded that the superintendent (who henceforth became known as “Skeletor” in my family) had misunderstood my essay. There were no errors in my arguments; the only “error” was that they had come from the pen of a sixth grader.
In high school, my masking primarily presented as me pretending to give a shit about sports — American football in particular.
All of the “cool kids” played football, all of the men in my family had played football, and the freshmen football coach, who had been a teacher of mine in middle school, had once ridiculed me in class upon learning that I played soccer in a recreational league, saying something to the effect of, “You gotta quit playing that kickball.”
My hometown, as you might have already gleaned, was not what I’d call a bastion of intellectualism.
Fast forward to my sophomore year and I’m playing in a sophomore football game — essentially a glorified scrimmage — and there’s another incident.
The referee for that game was none too happy to be there. How did I know this? Because he complained, audibly, loudly, about how much he hated being there. Apparently, the powers that be had underestimated his prowess as a referee. He really should only be reffing varsity games, he lamented. Why was he stuck here with all of these sophomore babies who could barely play the game?
This went on for three quarters. And while a good masked autistic might have simply ignored him and focused on playing the game, mimicking what all of the other players were doing, I…could not.
So at some point, after another bout of his incessant complaining, I turned around and said:
“Can you just ref the game?”
I was immediately ejected.
After the looooong bus ride back to our school’s locker room, the coach pulled me into the office (which stunk of cigarette smoke) for our inevitable chat. He asked what had happened. I told him. And he agreed with me that the ref had been an asshole.
I was free to go.
Looking back, football probably wasn’t the best activity for someone like me. To me, it didn’t matter if you were a student or an adult, an “underling” or an “authority figure.” If you were right, you were right; if you were wrong, you were wrong. And this sentiment (re: moral absolutism, another common trait among autistics) carried over into the classroom.
I had a couple of teachers whose teaching strategies seemed rooted in regurgitating conservative talking points. For example, there was the civics teacher who “taught” us about the Iraq War, which was then just in its infancy, by spewing wartime propaganda. I called him out on it and, to his credit, he invited me to present the “opposing viewpoint” — i.e., a viewpoint rooted in actual facts and evidence — in front of the class, something I reluctantly did. (Public speaking, at least while sober, was not a favorite activity of mine.)
Then there was the Bible-thumping English teacher who would bring in opinion pieces from the Boston Herald and read them aloud to the class, including one that declared action movies were destroying America’s youth.
This same teacher once, in what felt like some weird, nationalist ritual, forced us to look at the American flag and describe what we saw. When it was my turn, I told her I saw a piece of fabric. (Autistics can be quite literal at times.) She rebuked me, and then proceeded to ramble on about how she saw the faces of all the brave men and women who fought for our freedom.
From that day forward, I made it a point to counter her blatant Christian nationalist leanings every chance I got, writing essays on why being forced to say the Pledge of Allegiance in school directly contradicted the ideals of the Founding Fathers, and how Canada’s universal healthcare system was far superior to the healthcare system we had in the States. (It’s still better, by the way, and has been for a long time. But I digress.)
Incidentally, or perhaps not incidentally, I would end up moving to Montréal for college. During my closing weeks of high school, a coach/phys ed teacher of mine inquired as to what sports I’d be playing once I got there. When I told him “none,” that I’d be using my free time to pursue music, he responded by calling me “a waste of a body.”
That was one of the problems that came with being a six-foot-four high school student: there were always expectations as to what I should, or shouldn’t, be using my body for. And while my height has certainly provided me with advantages in life, it’s also made it harder for me, as an autistic person, to blend in.
I literally stick out.
Speaking of my body (brace yourself for an awkward transition), I feel compelled to mention that I was a self-harmer all throughout high school.
And consider this a trigger warning for those who don’t like reading about this kind of stuff.
Here’s the deal: When faced with emotional or sensory overload, autistics typically experience one of two involuntary responses. We either 1) “shutdown,” which means going silent and withdrawing completely from social interactions, or 2) we “meltdown,” which means — to put it plainly — freaking the fuck out. Screaming. Crying. Hitting ourselves. Banging our heads against the wall.
Of course, for many high school students, just about everything can feel overwhelming, romantic/sexual relationships especially. And this was absolutely the case with me.
At the time, two decades before I would learn I have autism, I felt compelled to hide my meltdowns. Granted, I didn’t know they were meltdowns — all I knew was that I felt like hurting myself.
But I also knew that banging my head against the wall was noisy, and could leave holes in the plaster. In contrast, razor blades and knives were quiet, and would only leave scars.
I tended to cut myself on my upper thighs and arms, spots where the scars wouldn’t be so easily noticed. I lied to my doctor, blaming a particularly long and nasty scar on my thigh on the cat. (The cat!)
One time I messed up and cut too deep and had to go to the hospital to get some stitches. I knew my lie for that one would need to be more convincing, so I concocted a story in which a pair of tweezers had become lodged in the door of a bathroom cabinet, with the pointy bits facing outward, and I just happened to walk by and accidentally slice my upper arm.
It was such a stupid story no one questioned its authenticity.
To clarify, my self-harming wasn’t a cry for help — it was my way of self-regulating. I didn’t tell anyone about it; to do so would have been to admit that something was “wrong” with me, and I desperately didn’t want that to be the case.
Fortunately, when I moved to Montréal for college (or university, as a Canadian would say), the self-harming stopped.
I found better ways to self-regulate.
Montréal: A Masked Autistic’s Land of Milk and Honey
I knew I was in the right city when I went to perform at an open mic night and there was a guy on stage reciting slam poetry in a skirt holding a stuffed raccoon.
Suddenly, all of my own eccentricities felt blasé by comparison.
Unlike in my hometown, where being “weird” and “sensitive” were shameful qualities that required suppressing, in Montréal such qualities were not only welcome, but celebrated.
Or at least that’s how it felt to me.
In the blue-collar suburbs of Boston, declarations of wanting to become an artist would often be met with derision, with knowing smirks and snarky comments:
“But what will you do for a real job?”
In Montréal, no one batted an eye when I told them I wanted to play folk music and/or write for a living. I’d never encountered such an accepting place, a place that so vehemently encouraged creativity and that put artists on such an exalted plane, far above the boring businesspeople of the world. (No offense, boring businesspeople.)
Of course, the drinking age being 18 didn’t hurt either. Neither did the easy access to drugs.
Whereas a neurotypical person (I can only imagine) might have been daunted by the idea of moving to a foreign city where they knew absolutely no one, I was thrilled. It was a chance to start over — to be a more authentic version of myself. And I’d be lying if I said being able to drink alcohol and smoke weed whenever I wanted didn’t help.
Within a few months of moving to Montréal, I landed a part-time job as a busboy/barback at an Irish pub. It was the perfect place to socialize for someone who needed to consume a lot of substances in order to feel comfortable socializing.
I had never felt more comfortable anywhere in my life.
My coworkers, all of whom were at least a decade (and in some cases, several decades) older than me, became some of my closest friends, continuing a trend that began when I was younger.
A quick tangent:
In high school, I regularly gravitated toward people older than myself, both for friendship and more-than-just-friendship, often hanging out with and dating people one or two grades above my own.
As a junior in high school, when faced with the inevitability that the bulk of my closest friends would be heading off to college in a year’s time, I created a group in my AIM buddy list (remember AIM?) consisting of people in my own grade. I titled it “people I need to be good friends with by senior year.”
Fortunately, I did become good friends with many of my classmates. And let me take this opportunity to stress that in spite of my (secret) struggles, my high school experience was, overall, a positive one. This was due in large part to the many thoughtful, caring people I counted (and still count) as friends, as well as to the handful of incredible teachers who, perhaps recognizing that my brain (quite literally) works a bit differently, helped steer me more toward activities I’d find fulfilling — like writing.
Alright, back to Montréal. And it’s about time this story took a supernatural turn, don’t you think?
(Bet you didn’t see that coming.)
Unless you’re like the self-described clairvoyant woman who, on a particularly slow night at the pub, sat down next to me and proceeded to tell me I was special, and that I had “magic” in me. She could sense it. My aura radiated it, allegedly.
In the years to follow, I would often look back on this episode with a chuckle. I even used it as a jumping-off point for a short story.
To be clear, I never believed her assessment to be true — and still don’t. There’s no evidence to suggest clairvoyance is an actual thing; it falls into the same category as god(s) and astrology and Santa Claus. (Side note: autistics tend to be more logical and evidence-driven in their beliefs than neurotypical people and, once again, I am no exception.)
What I do believe is that this woman, for whatever (non-supernatural) reason, likely had a penchant for recognizing masked austics.
Or she was just trying to sleep with me.
Only kidding.
(Well, half kidding.)
Anyway, as much as I loved my time in Montréal, it’s clear to me now (dare I say crystal clear) that I perhaps…overdid it…a bit.
True, I had effectively eliminated my “shutdowns” and “meltdowns,” but only by replacing them with drug-fueled reveling and alcohol-induced blackouts — or what I called “turning my brain off.”
Entering my third year of university, my GPA was a 2.08, which meant I was .08 points away from being put on academic probation.
What had happened to the (mostly) straight-A high school student who had graduated in the top 10% of his class, a class of just under 400 students?
Welp, he had gone on to join a class of 4,000+ students at university, a university where, for the most part, class attendance was not mandatory, which meant…he didn’t go very often. The structure and repetition that made high school super easy for him (academically speaking) had disappeared.
Okay, enough of this third-person nonsense.
I ultimately was able to graduate (and on time, no less), which can be attributed to my taking a slew of summer classes and to the positive influence of a certain someone. A certain someone who would eventually become (Borat voice, please) my wife.
But first we’d have to move back to the States and become boring businesspeople.
On the Art of Faking It Until You…Develop Cannabinoid Hyperemesis Syndrome
I’m not going to spend too much time on my foray into the world of tech startups because there are already more than enough think-pieces on the subject — including several I’ve written.
Like this one on how tech founders lie their asses off in order to attract (and underpay) workers. And this one on why executives are morons for forcing their workers to use social media. And this one on why executives are morons (again) for forcing their workers to take personality tests. And, my personal favorite, this one on why you don’t need to be passionate about a job to be good at it.
The common thread tying all of these think-pieces together?
They were all clearly written by an autistic person.
Of course, I didn’t know I was autistic when I was writing them, but it seems obvious now. These “counterprogramming” posts, if you will, were a continuation of what I had been doing in middle school and high school: writing unabashedly about how I felt and pointing out injustices and hypocrisies along the way — authority figures be damned.
Meanwhile, when it came to doing my actual work, I was pretty damn good at it. The problem, or rather, my problem, was all of the “company culture” bullshit and mandatory pompom-waving that got in the way of doing the stuff I liked.
This all came to a head in 2016 when my (now) wife and I moved from Cambridge, Massachusetts (where we had settled after Montréal) to the Bay Area in California.
My plan had been to quit my cushy, Cambridge-based tech job, take a little time off to get settled, then find a new, cushy, Bay Area-based tech job.
Instead, prior to moving, I signed on with a different Cambridge-based company — a fledgling startup — and immediately began working for them remotely when I arrived in California.
Financially, this would (eventually) turn out to be a pretty good decision.
By every other metric, it was a terrible decision.
Remember: this was 2016, the Before Times, back when remote work was still something of a novelty.
And while working from home tends to be a popular option among autistics, as it all but eliminates the need for in-person interactions, the particular circumstances of this job meant that I was in video meetings every day, my face often up on a giant screen for all to see. And because of the “timezone advantage,” I was forced to do customer support shifts, something I positively loathed.
I was a content creator, not a customer support person. So to get through it, I drank. And I relied heavily on my favorite herbal supplement, which was now available to me via a newfangled delivery method: the THC vape pen.
In Montréal and Cambridge, I had to roll a joint or, at the very least, pack a bowl if I wanted to get high. Now, I just had to push a button and take a toot on a little device — something I did all day, every day.
That Thanksgiving, I got sick as a dog and stayed up all night in the shower puking my guts out. I simply couldn’t stop vomiting. And the weirdest part was I wanted to vomit. My stomach churned for hours on end. The best way I can describe it is that it felt like there was a ferocious animal in my gut trying to burrow its way out.
Or maybe the weirdest part was that no one else at that dinner got sick. Because surely this was food poisoning, right?
The next day I felt better and made myself a Thanksgiving leftovers sandwich — the best!
I got sick again a few hours later. The burrowing creature in my gut returned, teeth and claws bared. The vomiting continued for days. I was completely incapacitated, only able to move from the bed, to the toilet, to the shower.
My wife called a doctor. I was prescribed some anti-nausea medication. Eventually, I felt better.
A few months later, it happened again.
A few months after that, it happened again.
And then again.
And again.
And again.
I was initially diagnosed with simple gastritis, but would later find out I had something called cyclical vomiting syndrome (CVS). And more specifically, I had a type of CVS known as cannabinoid hyperemesis syndrome (CHS), brought on by my long-term cannabis use.
The specific episodes were often triggered by high-anxiety social events — events where I would smoke (and drink) more than usual to cope with the stress of socializing. Holidays, in particular, were the biggest triggers.
I would end up spending a lot of holidays (and the days that followed) sitting on the floor of the shower, the hot running water being one of the few things that helped make the gut-gnawing feel less awful.
When my daughter was born in 2019, I knew I needed to make some changes. But couldn’t. Apparently, I needed one last push.
Missing a Christmas Eve celebration on account of my CHS ended up being that push.
I quit weed and alcohol cold turkey after that, staying completely sober for just under a year.
It was a rough year.
When my son was born in 2021, I celebrated with some whiskey, an indulgence I had planned well in advance.
My goal was never to be a teetotaler, you see, just to give myself time to “reset.”
Eventually, I allowed marijuana back into my life as well. But I approached it in (what I thought was) a more sustainable way. No more vape pen. No more mind-boggling strains with 30% THC levels. And certainly no more smoking all day long.
My drinking, too, I got “under control.” Blackouts were a thing of the past. Ditto hangovers. My trick was to get my drinking in right before dinner. That way, I could get a nice little (or big) buzz going, then eat a bunch of food to soak up all the booze.
If all this sounds a bit like someone dialing in the dosage of their medication to get it just right, welp, that’s essentially what I was doing.
And it worked!
I would go years without having another CHS episode.
But in those intervening years of gastrointestinal peace, I developed obsessive-compulsive disorder (OCD).
Because of course I fucking did.
Like Peas and Carrots: Autism and OCD
Everything you think you know about obsessive-compulsive disorder (OCD) is probably wrong.*
(*Unless, of course, you’ve taken the time to research it.)
While you’ll often hear people joke about how their “OCD is kicking in” when they’re tidying up, or arranging items in neat rows, or otherwise putting things in specific places, the reality is those behaviors are not indicators of OCD. Instead, such behaviors may suggest someone is anal-retentive.
OCD is a different beast altogether.
It’s a disorder wherein a person is bombarded with intrusive thoughts or feelings, which can only be “neutralized” by partaking in some type of repetitive behavior.
Now, those repetitive behaviors could, for example, take the form of compulsive table-scrubbing or hand-washing, but cleanliness isn’t a defining characteristic of the disorder.
And it certainly wasn’t for me — me being someone who thinks making one’s bed every morning is a waste of time. (You’re just going to unmake it later to climb in, aren’t you?)
Anyway, my OCD started out innocently enough. If someone said something to me I considered to be a jinx, i.e., “You’re going to play a great show tonight!”, I would knock on wood — knocking on wood being the universally accepted superstition for warding off bad luck.
Did I actually believe that knocking on wood would do anything? Of course not. But in those early days of what would become a compulsion, I treated knocking on wood as a sort of social ritual. It was something I only did in front of others. And it was something I did intentionally.
Eventually that would change.
My social ritual morphed into a private one, and soon I began knocking on wood not only because of things I heard, but also because of things I read, and even things I thought.
“Jinxes” were no longer the only culprits. Anything I perceived as negative could trigger a knock, but these triggers almost always had something to do with death or injury. Even just reading the word “death” in a book could send me looking for a wooden tabletop.
Intrusive thoughts about death and injury became more frequent — or maybe I just noticed them more? Regardless, it got to the point where knocking on wood every single time these negative thoughts cropped up became unsustainable. There simply wasn’t always wood within knocking distance. So my ritual evolved again. The “rules” became laxer, allowing my compulsions to become both more pervasive and easier to hide.
Here’s an example of what that looked like:
When driving on the highway, it became impossible for me to pass a big rig without thinking to myself, “Welp, that truck could absolutely swerve right now and kill me and everyone else in the car and there’s nothing I could do about it.”
Well, no. Not exactly. What I could do was knock. In my OCD-afflicted brain, it was my knocking that would stop the truck from swerving.
Unfortunately, there was nothing made of wood in my car. But wasn’t my seat covered in leather? Chances are it was actually pleather, but whatever, I chose to believe it was leather. And what ingredient is required in the leather-tanning process? It’s right there in the name: tannins. And where do those tannins come from? Trees! And voilà, I suddenly had plenty of wood to knock on.
It eventually reached the point where I simply started knocking on my own knuckles, because ultimately, aren’t trees and humans made up of the same stuff? (Yes, they are.) And didn’t we, like all life on earth, evolve from a common ancestor? (Yes, we did.)
Just look at the mental gymnastics I was going through, trying to rationalize a phenomenon that was entirely irrational.
I found myself knocking on my knuckles dozens of times a day in order to “combat” my intrusive thoughts, all the while thinking to myself: why the fuck I am doing this?
I didn’t actually believe my knocking was preventing those intrusive thoughts from becoming reality — there was no evidence for it — and yet, I couldn’t stop myself.
Another person might have taken that as a sign that it was time to reach out to a mental health professional, or at least tell someone about what was going on.
I didn’t do either of those things.
Instead, I kept my compulsive knocking a secret.
And I did boat-loads of research, which led me to the true meaning of OCD. (Before then, I too had thought it was all about lining things up in neat little rows and such.)
Once I had my (self-)diagnosis, I researched OCD treatments. Turns out, talk therapy rarely helps. But what does help is exposure therapy. And it was while I was researching how I might go about doing some exposure therapy on myself (did I really just write that?) that exposure therapy sort of…came to me.
I was in Tahoe with my wife and kids. We were trapped in a blizzard — feet of snow piled up on the streets, making it impossible to drive anywhere. That was the backdrop to when my daughter got a plastic bead stuck up her nose. Waaaay up her nose. What the hell were we going to do?
Fortunately, we were able to get it out using the “mother’s kiss” technique.
And doubly fortunately, this episode cracked something loose in my brain. It was as if my subconscious finally had the first-hand evidence it needed to let my compulsion go. All of that knocking, for all of those years, didn’t prevent this from happening.
I haven’t knocked a single time since that incident.
That was in February of 2023.
In June of that same year, I’d figure out I have autism. And chances are I wouldn’t have figured it out as soon as I did if not for the OCD.
Because the thing is, when I was doing all that OCD research, I kept reading about the overlap between OCD and autism.
For example, to the untrained eye, it can be easy to conflate stimming with OCD rituals (and vice versa). In my case, the knocking was definitely OCD, different from (what I’d later learn) were my stimming behaviors. But still, I found the similarities interesting.
The more interesting discovery, however (at least for my purposes), was that research suggests autistic people are more likely to experience OCD than the general population.
This was the final piece of the puzzle, as it were. It’s what pushed me to take the possibility that I had autism more seriously.
So when, that summer, I found myself completely overwhelmed one night at dinner (leading me to drink an entire bottle of wine in the span of about fifteen minutes just so I could sit still), I knew I had to figure this shit out.
I ended up finding — and taking — the CAT-Q online a few hours later. Then I shared the results with my wife, while also confessing to her that I’d spent the last few years dealing with OCD, something I’d hidden from her just like I’d hidden it from everyone else. Just like I’d hidden my autism — without even knowing that’s what I’d been doing.
I hate the idea of people worrying about me.
The last thing I wanted to do was make a fuss.
So Why the Hell Did I Write This and Make It Public?
Because, like so many others in my position, I’m sick of the stigma and shame associated with autism and mental illness.
I’m sick of the fact that so many people, including people in my own family, are afraid to talk about this stuff openly, and are afraid to even acknowledge their own struggles, and are certainly afraid to seek help.
Heck, it took me quite a while to reach that last milestone, and, admittedly, it was only the return of my CHS this past Easter (fucking holidays) that prompted me to make an appointment for a mental health screening.
Turns out, my self-medication regimen was not as finely tuned as I’d thought it was.
I was putting my health in jeopardy.
And with two young kids weighing heavily on my mind, I finally got it through my big, giant head that I needed help.
So now I’m back off the sauce. Back off the ganj. And fresh off an hour-long screening call with a psychiatrist, a call that would determine whether or not my health insurance would cover psychiatric care.
Which is bullshit, right?
If the healthcare system in the U.S. is atrocious (which it is), the mental healthcare system in this country is beyond atrocious; it’s abominable. There are people with far worse issues than my own who are allowed to fall through the cracks. That’s a feature of the system, by the way — not a bug. It was designed to be pay-to-play.
I’m extremely fortunate in that regard. Extremely lucky. And yes, it’s primarily luck, not hard work or intelligence, that’s led me to my current state of financial stability.
Still, I was petrified that I’d get on that aforementioned screening call and be told to take a hike, be told that I wasn’t “messed up enough” to qualify for psychiatric care.
Fortunately, again, I did qualify. After listening to a lot of the same stories you just read, the psychiatrist told me, “Ooooooh yeah, you qualify alright.” (Paraphrasing.)
I was also told that in addition to autism, I have generalized anxiety disorder and social anxiety disorder, which, honestly, was not that surprising to hear. Such disorders often go hand-in-hand with autism, same as OCD.
So, what’s next for me?
My first real appointment with a psychiatrist is coming up soon.
In the interim, I’ve been learning a ton from social psychologist Devon Price’s book Unmasking Autism: Discovering the New Faces of Neurodiversity. It’s a book I cannot recommend enough, not only for fellow masked autistics but also for anyone who’s interested in learning more about the intricacies of the disorder.
One of my biggest takeaways from Price’s book thus far is that “unmasking” is one of the keys to living a happier, more fulfilling life as an autistic person.
What does unmasking entail? For starters, it means not being ashamed to tell people you have autism.
Mission accomplished.
It also means letting go of blunting your autistic traits with substance abuse, learning to embrace and be open about your special interests rather than feeling embarrassed by them, and coming to terms with the fact that, once you start doing those first two things, you will likely become more visibly autistic.
Working on it.
Case in point:
One new strategy I’ve recently employed for dealing with shutdowns and meltdowns is keeping a fidget toy in my pocket. Whenever I’m starting to feel anxious or overwhelmed, I take it out and…well…fidget with it. It has been surprisingly helpful. And of course, the rationale behind it makes perfect sense:
It’s a non-destructive way to self-soothe. Preemptive stimming, if you will.
Are people gonna give me weird looks when they see me fidgeting with it in public?
Let them.
I’m just now starting to realize that my health is more important than whatever fleeting embarrassment I might feel.
As a closing thought, I want to reiterate that I didn’t write all this and share all this to garner sympathy or empathy or any other kind of athy.
I’m not fishing for comments about how brave I am or any of that shit.
Firstly, and selfishly, I did this for my own catharsis.
Secondly, I know from experience that reading about other people’s experiences with autism and mental health issues can be incredibly powerful, especially when it comes to feeling less stigmatized.
There’s nothing wrong with having autism. Yes, it means we’re different, but it does not mean we’re less than.
Autism is not something you need to hide.
Autism is not something you need to be ashamed of.
And if anyone tries to convince you otherwise, I encourage you to take a page out of my book…
…and tell them to go fuck themselves.
Just kidding.
(Well, half kidding.)
