My History with Autism

I'd thought it was all NVLD and depression and maybe a few...'quirks.'

Despite yapping and running my fingers about it constantly, what is my history with autism? I have known about my condition for not even a sixth of my whole life, but since my knowledge and acceptance of the fact, I have learnt much. Yet I also still have much to learn. And in some cases, unlearn.

But I cannot give great current detail without revisiting the past, as to give further context. Hindsight is the cruelest gift, for we cannot journey back in time to teach what we currently know. And it’s also important to state that just because I didn’t know about my autism prior doesn’t mean I didn’t have it. This mindset seems to sometimes cause controversy with folks against self-suspicion (but not self-diagnosis, which I agree with, as we are not doctors or psychologists or psychiatrists, and cannot diagnose ourselves. We can, however, suspect, inform, and educate ourselves, and pursue further diagnosis or not).

Let me rewind to perhaps five years ago, before I was comfortable with myself as a human being (and much prior to even when I’d dreamed of having a Substack, or knowing of its existence!). I was working retail, and it was scarcely spring of 2021. I didn’t know what was wrong with me, but somehow my mind just couldn’t handle working anymore. My fiance and I had just secured a place of our own merely months prior; they worked at home, and I had my out-of-house job.

Any excuse to not go into work I’d fight tooth and nail for. Snowy driveway? Upset stomach? I couldn’t explain it, but there was this block in my mind, where I became overwhelmed and irate and monstrous with the obligation. And the time, oh my goodness! A half-hour there and back, with an hour lunch break, and not to mention seven to nine hours on the job. Customer after customer. Returning clothes unpurchased. Stocking shelves (which I enjoyed; nobody to ask me how my day was, and I could see my progress and work at my own pace).

“What can I help you with?” I glumly asked one middle-aged lady, who stepped back from the counter as if insulted. “Let’s try this again,” she snapped. “How are you doing?” she requested, and I’d had enough. I didn’t care about how everyone else was doing*. Here I was, stuck at this dead-end job with no growth opportunities, even more demands, and for no pay raise. Ten hours a day of my life wasted, and here was this customer, seemingly in complaint about me not being cheery or polite. You’re spending money and I’m trying to make it; my apologies for not adhering to your petty social demands.

*Even if I couldn’t force myself to be pleasant, I’d at least attempt to do things in a nice way, if that makes sense. But how concerning can it be when the gentle-moving man just looks so weary and angry?

Either I didn’t reply quick enough or my glumness was all the more apparent, but she’d had enough. “You never say hello, you never ask how anyone is doing! It’s like you don’t even want to be here!” Maybe I’d tried to apologize, but what’s the point? “I’m going somewhere else,” she replied, and took her things to another register, where she openly complained about me to that cashier. “He needs to be fired. He’s never happy!”

What I was going through was immense burnout. I’d worked at this job for about seven months, all during the pandemic, though at a different location where I still lived with my parents. Same job, different location…and seemingly different stresses. Why was I like this? Why wasn’t I energetic or happy anymore? What was going on with me? Why could I, at my previous location, be fine with being out of the house for twelve hours—practice at the local church, and then onto the store, from 10 to 6:00?

At this new place, I’d had some mental (but not emotional) breakdowns already. The crisis hotline was on speed-dial, and I’d spend my hour-long breaks in turmoil, feeling like there was no way out. I hated everything. The obligation. The time constraints. The fact that when I got hungry, everything annoyed me, and I couldn’t get home fast enough, by seven or eight o’clock at night, hastily eat a supper I couldn’t enjoy, shower, sleep…and rise at 4:30 to repeat the hellish process all over again.

Luckily, around February, I was allowed my first ever paid vacation. I took a week off and I was free. Mentally. I stayed at home, woke up late, prepared my fiance breakfast, practiced music, went on nice drives in the snowy backroads of somewhat northern Maine. And as my break ended, I knew I couldn’t continue like this. But why? Why could I do it for so long before but not now?

I thought things over with my fiance and we had long discussions. “I can’t do this anymore. My life will go nowhere if I stay at this job. They want to give me more things to do and not pay me more. I don’t understand but it doesn’t feel worth it.” We talked about finances; while living with my parents, I’d managed to save up a great chunk of change. My fiance was still working, after all, and our combined savings were abundant.

I hardly gave two-weeks’ notice. They knew I’d had some mental-health issues, as I’d addressed them, dropping from forty hours to thirty-five, but really it made no difference. Once my insurances began being docked from my paychecks, that was the final straw. One day perhaps late February, I bid adieu to the Reny’s in Ellsworth where I’d worked and toiled and hated all things.

And amid the peace and tranquility of our home in the woods, I rested and questioned. And for the first time, I realized I had the sanctity of wondering about myself, and being anxious yet unafraid to look at myself in the mirror. I was, admittedly, part of the mindset of r/antiwork, a Reddit community which I frequented in my hatred. Folk struggled like me with the notion of being independent but having all our time taken up by mere work instead of actually living. Was it all worth it? What’s the point of living if we can hardly survive, cannot thrive, and not even have energy to enjoy our time off?

I went on walks. I baked. I wrote and practiced music. I supported my fiance as they toiled with their own customer-service job. While it was work-from-home, they too felt trapped, and with no escape. Then, one day, “Hey. Is it okay if we visit my parents for Easter?” “All right with me,” I replied. I think I was making Macaroni in the kitchen. Footsteps. “Huh?” they asked. I turned, quizzical. “You’re okay with it?” Hesitantly, I replied, “…Yes. Why?”

They elaborated that usually I pushed back when it came to last-minute things, or was usually oppositional at times, especially when it came to visiting their parents (we’re talking about a two-hour drive here, regardless of where we’ve lived over the past decade). “I do?” I asked, though already my gears had been turning inside, thinking of all the times such a thing had been requested, usually late at night, at which point I’d gruffly reply a yes or no, but even a ‘yes’ was usually said in fury, as to reply in the negative wouldn’t be great. “I do,” I said in realization. “Well, maybe this time you’re okay with it because you don’t have anything else to worry about, like work?”

Around spring of 2022, I was catching up with a fellow musician who I’d met recently. They’d admitted to me some of their struggles in obtaining musical work, and how some challenges included personability, having enough energy, not being a quite emotive individual, and a few other things. Some traits I recognized within myself, like not being quite emotive, and sometimes having my fair share of social ineptitudes. “All that is part of my autism, though I try not to share the fact,” this fellow musician said. Politely I nodded and said I understood, but meanwhile panic was going off inside my brain. The dots began connecting. Autism? I thought. What did I know about it?

Precious little. A kid in middle school was rumored to have had it, and I’d recollected to when we worked at the same grocery store later on, but different departments. His curtness, or how he’d stare as if observing things but impassively. Or perhaps if frozen. How he’d rush past with his push-broom, not bothering to weave around customers. “Coming through!” he’d shout, somewhat robotic, and woe be to anyone who didn’t move. Or how I’d read a coming-of-age book once about the main character, whose brother David had autism, and struggled with saying the wrong thing at times, or having loud meltdowns. On the cover showed a rubber duck inside a fish-tank, which I guess was something David did at times.

Or how one time, in elementary school, as I was watching the news with my mother, there was a segment on a current train situation where there were many delays. The reporter was interviewing a woman who was sobbing, quite in distress, and moreso for her daughter, who was on the spectrum. “There’s no way to go home,” she wept. “No way to get my daughter toast or orange juice.” My mother scoffed dismissively, a sneer on her morning-face as she played games on her iPad. “I can see why her kid has autism,” she said in her typical holier-than-thou voice.

“I think I have autism,” I said to my fiance one afternoon at supper. I told them about my meeting with the fellow musician recently, how it was brought up, and how I’d began to read up about it. And consume Youtube videos, like Autism from the Inside. One such title stood out to me, wondering if you might be wondering if you have autism. Do I have autism? I asked myself in my head or in my journals. I was still journaling heavily at this point.

Or do I want to think that I have autism? I also asked myself. I wanted to approach this critically, and from the perspective that certain things may resonate with me or not, and not that I was being influenced to think a certain way, from the mere perspective of identity, like how I’d been enveloped by Baroque music and thought I was a decent Baroque composer. But another bit of my identity was missing, and had always been missing. Something had always felt wrong. Could it perchance be this?

I watched, consumed, read up on, and reflected. Autistic individuals can like making lists*, or there being certain order and routine to things. Repetition like stimming. A tendency to fall into shutdown or withdrawal after socialization, or becoming overwhelmed due to stimulation. “I’d always wondered about you when it came to getting irritated at too much noise,” my fiance pondered. I went to check back at our Google chat history, and the mention of ‘autism’ did indeed go back to 2020. But would I have listened back then?

*My intense obsession with the music of J.S. Bach housed within my journals and laptop. Endlessly I’d organize his works, copy out their titles by number or alphabet, play his music on repeat on a giant iPod so I’d keep track mentally.

More importantly, autism was common to have gone hand-in-hand with having other disabilities or internal conditions, like anxiety or depression. I’d had long battles with depression and, since about 2004, and diagnosis of NVLD. “You can’t use your disability as an excuse!”* my mother would screech, irritated at me for not understanding written directions or recipes, or getting overwhelmed while learning to drive. But if my NVLD is so small, and only meant to impact learning math, why does it have such a huge effect on my life? I’d wondered constantly throughout high school and university. Why was my handwriting so awful? Why was I so avoidant of things I didn’t understand, or not emotionally expressive enough, and so obsessed with Bach’s music, and the drive to be alone but not lonely, and like nobody else, but fearing being apart?

*My mother was self-loathing of her own dyslexia, and never sought help for it, or ever wanted the vulnerability of ‘appearing weak.’ To have narcissism must be its own kind of hell, but there reaches a point where one’s treatment of others may be unacceptable. Sometimes parents are in jealousy of things that their children receive that they did not, but to be the self-fulfilling prophecy of that for your own children…

Due to having a prior learning disability, I still had connexions with the Vocational Rehabilitations with my state. My counselor heard me out when I said that I wanted an appointment, somewhere, anyhow, anyway, to obtain a diagnosis. This took perhaps six or seven months to fulfill. “We’re pretty sure you’re on the spectrum,” my fiance said at supper, continuously, soothing me as I awaited my appointment, living in anxiety as I read more and more.

It turns out that autism can be largely hereditary, and caused by genetics. Vaccines aren’t a cause and never have been (sorry RFK J.R. and Andrew Wakefield). No one ‘gets rid’ of their autism through yoga or meditation or dieting. It cannot be erased or eradicated, but managed; medications can help at times, though some of that might be for other comorbidities, like anxiety, or some traits of ADHD. In terms of genetics, one is at a higher risk for it due to having a complicated birth, and/or having older parents. I ticked both those boxes, as I’d been born three months premature to parents approaching their forties.

Finally the day had arrived. I didn’t bring notes because of my handwriting, but had emailed extensive notes and observations. I didn’t have a doctor, and didn’t trust the psychologist to reach out to my parents for information about childhood (and, given my written and verbal statements about physical and mental abuse while living with them, the doctor agreed). “I don’t want you to give me a little gold star which says ‘I have autism!’ on it because I’m asking you to, but because NVLD doesn’t explain it all. Neither does depression.”

And I went into my history. Getting overwhelmed in restaurants. Being massively exhausted after being around people and needing to isolate—from everyone, no matter how much I loved them. Intense interest in Baroque music, and aversion to all else (sorry, XXth century music theory in university!) Having gut issues and constipation, as well as PRA (public restroom anxiety) for as long as I can remember. Periods of being unable to speak, either due to anger or exhaustion. Getting shut down due to change of plans or things not going as I’d predicted. Or been told.

That’s just the tip of the iceberg. How I wish, currently, to meet with my first counselor at VR, who suggested I go into Gestalt Therapy while in university (this type of therapy works quite well for folks on the spectrum…but this was back in 2015, when I’d had no clue). But did my therapist know that I had no clue? Vaguely I remember our endless discussions on my confusions with human emotion, not understanding people, my issues in my relationship as well as with limerence.

Weeks passed. “I think you were onto something when you came in with your suspicions,” the email began, and just like that, my fears and thoughts were validated. I was officially diagnosed. I don’t know if I cried on that morning at 6:00, but I did become…melancholy, and full of acceptance, but also sadness. Who would I be if I had known before? Would I have struggled as much? “Do you think my parents knew?”* I asked my fiance that afternoon at supper, but they shrugged. The process of acceptance is one paved with good emotions, with joy and freedom, but there exists also longing, sadness, and maybe a hint of anger. At ourselves, or at the world. And I’ll not lie and admit that anger has been a great part of my psyche since learning this about myself…but that is for another day.

*According to my last IEP in high school, which I scoured after obtaining a copy from Vocational Rehab, autism ‘had been ruled out’ earlier on, yet in the same sentence the counselor had noted my poor eye contact, my tendency to ‘mask’ things, my strict interest in music, and my delayed responses, as well as intense introversion. The connexion between autism and NVLD was known about as far back as the 80’s, well before I was in existence.

And finally inside there was blissful peace. I could stop screaming in my head. I could stop writing and journaling for fifty pages over any misunderstanding or over-reaction. I could think and understand instead of running in my head around with endless loathing and questions. For the first time in nearly thirty years I knew true mental peace and calm, and it was all because of this missing piece of my identity. I could finally live, and thrive…and you folks know the rest, because I’ve been spilling the beans here ever since! ;)

Thanks, as always, for reading; til next time.