I learned recently, after a long exploration, that I’ve been autistic my whole life and never realized it. As I absorb this news, I find myself having two reactions. On the one hand, I’m ambivalent. It’s just a label. It doesn’t change anything. I’m still the same person I was before receiving this diagnosis. And the diagnostic process is terribly flawed and subjective anyway. Does it mean anything? On the other hand, it is monumental. Huge. Extremely significant. I am reexamining my entire life, scenes replaying through my mind, suddenly having a plausible explanation for so many problematic episodes of my past. After a lifetime of wondering, “What is wrong with me?” (and being asked that question, literally, by many people close to me), I can now say, “Ahh, so that’s what’s ‘wrong’ with me”.
This newsletter is how I am processing my diagnosis, exploring different episodes of my past, reflecting on how I see the world, and reconsidering what I thought I knew.
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“Maybe you don’t have a problem,” a good friend once told me, after I explained my lack of reciprocal feelings for a perfectly wonderful person and asked rhetorically, “I don’t know what my problem is”. Only in the past six months have I come to realize that my “difference” might not be a defect. I just didn’t know how to harness it, or even recognize it. Instead, I stumbled through awkwardness, shame, embarrassment, disappointment, confusion, and rejection in endless, self-reinforcing cycles.
Standing on the periphery of a group of people, I am mostly silent. I don’t engage in conversation with anyone, and nobody engages me. I smile and try to react to what others are saying, but I’m not really there. After some time I feel awkward. I might try to say something. A joke maybe. It doesn’t land well - nobody gets it. Then I feel shame for saying something stupid and possibly offensive. I’m disappointed in myself, and confused - why is it so hard for me to participate? I feel rejected. I am rejected. I’m not really part of this group. Why am I here? I should leave.
This cycle repeats, often leading me to act like a jerk (that’s how I realize I was perceived hours or days later), or to just disappear. I often walk away without saying goodbye. Whether it is literally leaving a gathering of people after saying I am going to the restroom, or leaving a lease, a roommate, a job, and a city behind without so much as a goodbye. When I left D.C. I didn’t even move my stuff out of the apartment. I left a bedroom full of yard sale furniture, heaps of trash, piles of clothes that wouldn’t fit in my bag, and a few things I still miss. I don’t know what I expected - did I think my roommate would just deal with it? I didn’t feel bad about it or realize what a horrible thing to do that was until years later. Who does that kind of thing? Who would just abdicate their personal responsibility and walk away, leaving others to clean up the mess? Me. I do that kind of thing. Or, at least I have done that kind of thing in the past. I don’t think I would do it again today. I’ve learned to adapt.
Explanations I’ve told myself for my behavior until now:
Maybe I’m just an asshole (a label many people have used to describe me).
Maybe I don’t have a conscience? (the explanation offered by a high school acquaintance, one of the many people I stood on the edge of friendship with, but never really got there)
Maybe I just don’t like people? (I’ve often been accused of “not liking” people. In high school I made a video called “People are Stupid”, in which me and my co-instigator, Ryan, edited together scenes of random people that we had taken video of.)
Maybe I just “need to be different” (as other kids on the playground would sneer whenever I did anything out of the ordinary, which was pretty much every day).
Maybe I’m gay and my behavior is the result of internalized homophobia and self hatred? I toyed with this idea in my early twenties. After a month of reading the gay 101 library (as a gay acquaintance called it), hanging out in gay coffee shops, browsing gay bookstores, and talking the way I thought gay people talked, I met a woman. We lived together for almost ten years.
When I was dating after becoming single in my thirties, I would think I had fallen in love within weeks, and then completely withdraw after a few more weeks. I left at least a couple of women feeling quite confused. It was during this time that the friends I had been hanging out with told me about an idea for a new business they came up with. These friends were always coming up with funny business plans that they never had any intention of carrying out. They would entertain themselves by getting more and more elaborate about the ideas, sometimes carrying on for months, plotting them out over cocktails night after night. One time it was a breakfast stall in the farmer’s market - they even researched the costs and application process. This time it was a dating site called “OnTheSpectrum.com”. Where autistic people could find one another. They had a whole pitch around it. I remember laughing with them, thinking it was funny. Because, you know, we all meet someone occasionally and we think, “there’s something funny about this person. I wonder if they’re on the spectrum”. Only now does it occur to me that perhaps they were trying to give me a hint. They were making fun of me. I wasn’t in on the joke, I was the butt of the joke. They were some of the closest friends I ever had. We fell out of touch after I got married and had a child.
Did they think we were close friends, or was that just me? I’ve asked myself this question about so many people I’ve been close to, constantly wondering if my feelings are reciprocated, doubting that they are, and assuming that when people get a call, or a text, or an email from me they cringe a little, “Here we go again,” they might think. Or is that all in my head? I doubt my own feelings, too. Do I really like this person? Honestly, most of the time I’d prefer to be alone. On the rare occasions that I reach out to friends, is it because I desire to or because I feel like that’s what I should do? Is there any way to answer that question, really?
It’s always easier to see things about other people than it is to see things about yourself. After the dot-com crash, in my mid twenties, I lost all confidence in my ability to find a “real” job. I didn’t think I deserved one. I had nothing to offer a job that required more than one’s physical presence and manual work. So I applied for jobs that only required a high school degree (while, of course, trying to pay off the $25,000 in debt I had accrued earning my college degree). I ended up working as a teaching aid in an elementary school classroom for kids with “severe disabilities”. It was called District 916. It was where public schools sent the kids they couldn’t handle. The “toughest of the tough”. The “hardest of the hard”. I can’t remember whether the principal actually called them the “worst of the worst”, but I wouldn’t be surprised.
Most of these kids were autistic. Many of them were non-verbal. At least a couple of them would regularly throw their poop around the classroom. We called it feces. That’s the professional word for poop. I learned how to physically restrain autistic kids who were having meltdowns. We would put kids in “time out”, locking them in small rooms all alone. It was sickening. This is what the professionals did?1 When the parents came for pick up at the end of the day, I remember looking at them with such pity. How horrible it must be, I thought, to have a kid like this. I remember being grateful that my girlfriend at the time didn’t want kids because I was afraid to risk having a child who turned out like one of these children.
I am also autistic? Me? My brain is similar to the brains of those kids? I never would have thought that. I never would have let myself think that. Or at least, I never would have admitted it. I was drawn to those kids, though. I felt something for them. Perhaps a kinship. But I can’t compare myself to them. Their autism is different from my autism. People make generalizations, but autism is complicated. It's nuanced. It’s unique. That’s not to say I don’t think autistic people have things in common. I was drawn into seeking a diagnosis after meeting so many autistic people and seeing myself in the stories they shared. But we don’t act the same. We don’t look the same. We don’t talk the same. We don’t have the same interests. One thing is the same, though - nobody who meets us would think that we’re autistic. We’re good at hiding those autistic things. We’ve learned to adapt, to cover, to mask; people have different words for it. I call it pretending. As in, “In social situations, I feel like I am pretending to be ‘normal’.”2
It is common for me to laugh at jokes that I don’t understand, to nod and comment in a conversation as if I can relate to what is being said, or to use the words that I’ve learned will demonstrate empathy with whatever a person is sharing. People tell me that I am a good listener. I think I’ve learned how to make people feel like I’m a good listener. Similar to how I learned how to make people think I understood technology when I worked in technical support.
“That sounds really hard”
“I’m sorry, it sounds like a really frustrating experience”
“I know it’s not my fault, but I’m still sorry. It’s not your fault, either”
“That’s amazing! Congratulations! I’m so happy for you”
“Thank you for sharing that. That took a lot of courage”
“I can’t really imagine what that feels like, but it sounds really stressful”
“That is huge. That is a really big accomplishment. You should be proud”
It’s not that there is no truth to these sentiments. It’s not as if I don’t have any emotions at all. I’m not completely cynical. But my natural reaction - the things I would say if I wasn’t trying to emulate what I think is “normal” - would not include any of these statements. They are all learned through observation, trial, and error. None of these statements are “me”. What would I say if I was being my “natural” self? I don’t know. It’s been so long since I’ve let myself be that person that I can’t remember.
“Huh” (confused face)
“Hmm” (blank stare/trying to understand face”
“Hm?” (eyebrows making questioning shape over narrowing eyes)
“Cool” (slight smile or perceptible nod)
“Ah” (eyebrows rising high above wide open eyes)
“...” (being called on in class look, when the person pauses and says, “I don’t know. What do you think?”)
I remember once when I was a teenager, having coffee with a young man who was a bit older than me. He had crossed the line into adulthood. He was married. He and his wife lived in their car and worked at a restaurant as waiters. That’s where I had met them. I was a bus boy. It was one of my first jobs. They took me into their circle of friendship. They were cool. They were real people, really living life, having adventures, facing real problems. They were from upstate New York, or maybe it was rural New Jersey. They were in town as part of an extended journey in search of something they couldn’t name. They saw something in me. Something behind the awkward shyness, unkempt hair, dirty tee-shirt, badly fitting pants, and bad smelling breath. Or, they thought they saw something in me.
We were having coffee at a cafe one morning when I was home from my freshman year of college. I had last seen them in August before I left. Now it was December. A lifetime had passed for me, leaving home for the first time, living in Los Angeles, realizing that I was a person, but not knowing how to be one. For him I guess it had just been a few months of the same shit. He was excited to see me. He wanted to share something. He was talking and talking, going on with some complicated story that I couldn’t follow at all. My mind was elsewhere. I was making the listening face, but I wasn’t really listening. Then he paused and said, “What do you think about all that?” I stared at him blankly, having no idea what to say. I hadn’t really heard any of it. I wasn’t expecting him to ask me what I thought.
“I don’t know.” I said, sipping my coffee, which I didn’t like and didn’t want but drank because I felt like I should drink it. He looked disappointed. He wanted me to say more. “I guess I’m not sure what to think,” I offered.
“But what about the aliens?” He said, “What about the idea that there are aliens here? With us now?”
Huh. Is that what he had been trying to explain? I didn’t hear anything about aliens. I think I said, “that sounds kind of crazy”. His face dropped. Whatever he had thought he saw in me, whatever light he had detected in my eyes, whatever kinship he thought we had, it all vanished in that moment. I could see it leaving. I could see whatever connection he thought we shared being severed between us. Like a fishing line snapping after landing a big fish, the tension in the rod suddenly going limp, the realization sinking in that what you thought you had was gone. After that morning, I never saw him or his wife again. Sometimes I think about them. I wonder if they survived.
These are just a few of the scenes that have been creeping into my consciousness as the realization of this diagnosis sinks in. The memories are real, vital, exact. But are they accurate? Did it really happen that way? One thing I’ve learned is that it doesn’t matter so much if memory is fallible. We can’t really have a truth when we’re talking about the past. The other people in these scenes might not remember them the exact same way (if they remember them at all), but they also didn’t see or experience them the way I did. They didn’t draw the conclusions I drew in the moment or afterwards. They didn’t have the intent I attributed to them (or maybe they did, I’ll never know). They didn’t think about me what I thought they did (they probably didn’t think much about me at all, it’s been suggested). I guess that’s the thing about brains being different. We all have our subjective interpretations of just about everything we experience. Mine are just a bit more different than most. At least, that’s what I’ve been told.
From the job description “redirects students engaging in negative or unexpected behavior; documents behaviors; implements behavior support plans and monitors for effectiveness; intervenes when necessary to deescalate students deemed to be in crises.” accessed July 30, 2021. https://www.applitrack.com/nemetro/onlineapp/jobpostings/view.asp?category=Special+Education+Services&subcategory=Education+Assistant+Specialist
Question from the Cat-Q autism masking assessment, accessed July 31, 2021 https://embrace-autism.com/cat-q/