Nov 3, 2024
About 6 years ago, I decided to start writing. It was a whim, just something I wanted to try. I'd been an avid reader my whole life and so the idea felt natural. It didn't take long for me to lose myself in it. I wrote a "book", and then I rewrote it. And then I rewrote it gain. My normal influx of reading material shifted from fiction to "how to write" and "how to self-edit" books. I used that to refine my story, and then I restarted from scratch, again. I briefly worked with an editor, got some feedback on how to structure novel-length prose, and started rewriting it again. But I was unhappy. Even if it was correct form for a novel, what came out wasn't what I wanted to write. About that time, I was introduced to web novels. I gave up trying to write a novel and decided this was my way forward. I probably rewrote it another two times before I just…kind of…stopped.
I spent almost two years in a state of limbo, wanting to write, feeling the need to, yet unable to proceed without knowing why. Nothing prevented me from releasing except me. I have endless journal entries where I theorize as to what was wrong with me. It's a familiar theme, me not understanding me.
Several months ago, I was diagnosed as autistic. This came as a complete shock to me. I grew up in the 80s and so my 'conception' of autism was very skewed. Autistic kids in 80s had severe intellectual disabilities and flapped their arms in weird ways that got made fun of by all my peers. They were kids who could not speak but could play Mozart after hearing it only once. They were an insult and, oddly, they were kind of a compliment at the same time. Idiot savant.
The idea that I was autistic never crossed my mind. Looking back, it really should have. I'd been asked if I was autistic multiple times throughout my life, and more than once by someone autistic themselves. But the image of autism in my head was too far removed from what I experienced.
The diagnosis changed all that. The past several months have been one life-shattering realization after another, as vast swaths of my life suddenly made sense, and not always in a good way. I'm only now realizing that even this is abnormal, that most people have a "story" of their life that at least makes sense. Mine doesn't, and it never did. I've looked at entire years of my life and I can't tell you why it went down that way. I barely understand what happened, or why I did what I did, why I couldn't do what I wanted to do.
Writing has always been a process of self-discovery for me, and so I thought I should go back and rewrite this story and make it about…
…wait…
They were all autistic already. As I went back and looked over my protagonists, I realized I'd written too much of myself into them. They were all autistics struggling in their own way to deal with a world that fundamentally made no sense to them.
I didn't need to write a new story. I needed to continue writing the one I already had, and I needed to start releasing it.
Writing is a process of self-discovery for me, and that is what this story is. It is a story of people caught up in a world they do not understand, a world at odds with the very essence of who they are.
But instead of the world slowly grinding them down to nothing, they will break the world and make it something new.
I have no idea whether that's a good thing or not.
How I learned I was autistic
My wife and I have had a long disagreement about our kids. She would point out something odd about the way they behave; I would disagree that it's odd. I did the same thing when I was a kid, so it couldn't be that abnormal. This continued for years, although it wasn't particularly intense. The were just small disagreements.
But over time, even I began to feel uncomfortable.
You see, there was a period of my life (my twenties, may they rest in peace) where I never wanted to have kids. I was afraid I would ruin them with how broken I was. In time, I learned to mask, pretend I was normal. Eventually, I even convinced myself that I was normal. Or…normal-ish—I actively suppressed and ignored a lot.
That fear, so long forgotten, started worming its way back into my heart. I began to worry that I was somehow responsible. I doubled down on my efforts to be normal, but the impact it had on my mental health…wasn't great. I began to wonder how long I could make it. I kept telling myself I just needed to make it long enough for my kids.
And then my wife told me: my eldest had been referred to be assessed for autism.
My mind stuttered. What? Autism? A hundred stereotypes flooded my mind, none of them great. But more importantly, none of them fit.
So I did…what I do. I researched the ever-living hell out of autism. I'm up to over a dozen books read on the subject now with no signs of slowing.
I think the first time I broke down, I was simply reading the diagnosis criteria meant to determine how much an autistic person was masking (hiding their autism). It was like someone had taken every strategy I've ever employed, all of which I'd kept painstakingly hidden, ripped them out of my head, and stuck them in a test as diagnostic criteria for a mental disorder.
The following months were emotionally chaotic—and still are. I went through dark depressions as I realized the lies I'd told myself about who I am and, more importantly, who I could be. I went through euphoric moments when I realized I was allowed to be "real me" and, for example, flap my hands when I was excited.
Yes, I flap. That thing all my peers made fun of as a kid. It looks like I'm trying to fling water off my hands, which is ironic given it feels like I'm trying to shed excess emotion. It's also how I express joy, and I've ruthlessly suppressed it my whole life. Except…
When I told my wife about this, she looked confused and said, "But you already do that." She just thought it was a "me" thing to flap my hands, which…yeah, it is a me thing.
This was followed by more dark moments as I grappled with limitations I now realized would never change. I could never try hard enough—that was one of the lies I'd been telling myself. I could only work around them.
I was diagnosed first. The waitlist for a young kid was nearly nine months. I was able to do it online with a PhD in Neuropsychology in a process that took over three hours and hundreds of questions, including a weird period where they turned off their camera and pretended they need to go "get something at their door". Pretty sure it was an observation period. At the end, they declared me autistic, which confused me because they'd explicitly mentioned that results would take up to two weeks. When I asked, they laughed:
"You tripled the threshold values for an autistic diagnosis. There's literally no point in waiting two weeks. We only do that if the scores are close, and we need to reevaluate and review the answers. There's no doubt you're autistic, at all."
It still irritates me. I've got an in-person assessment scheduled to start in May of next year—waitlists for in-person assessments are long, almost a full year. But I want to see if they can add anything new. But at this point, there's no real doubt.
Still, autism is a lot of answers with very few solutions. I have a lot to explore and, well, that's what this is all about.