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"Actually..." (A one word title for a too-many-words post about self-diagnosis)

Too many words about why I self-diagnosed myself and why it took me so long to write about it.
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  1. "Actually..."
    (A one-word title for a way-too-many-words post on my self-diagnosis)

    At the beginning of this year, I realized I am on the autism spectrum. In this spring, I joined this site, discovered the blog feature, and attempted to write this post, for the first of many times. Initially, it was meant to be a post explaining why I believe I am on the spectrum. I was going to briefly sum up autism, and make my case for self-diagnosis. This endeavor was doomed to failure, for several reasons.

    First of all, autism is not easy to sum up. Someone else did a better job of it than me, at the link here: What Is Autism? There's more to it than what's written there, but it's a refreshingly neutral and honest summary. (The DSM-V is a step in the right direction, but it is written with the pathology paradigm--in other words, it's more concerned with how we appear abnormal and bother allists than it is with how we experience life, and the issues we face. I'll elaborate on this in another post.)

    Second of all, I always got sidetracked as I wrote. I've spent most of this year re-examining my entire life through the lens of autism. There's a lot to unpack, and I've got pages upon pages of baggage in a document on my desktop. Some of it may find its way to this blog later, but this is not the appropriate post.

    Third, and most importantly, I realized that my motivation for writing was insecurity. I was very shaken from a life-changing realization, felt very insecure about being self-diagnosed, and consequently felt a need to "prove" my condition. Dysfunctional, yes, but in my mind, since I was making an extraordinary claim, I felt I should be able to present evidence and make my own case. Sadly, after a few tentative disclosures, I realized two things: Most of those I disclosed to already suspected I was autistic, and most of their minds seemed closed to what I had to say on the subject. (Again, a subject to explore further in another post.)

    All that I'm left with now is explaining how I discovered I was on the spectrum. It's a story of ineptitude, lack of self-awareness, poverty, and unintentional cruelty. It's also significantly less compelling than this synopsis, but hey, you've already wasted several minutes reading this far, so why stop now?

    When I was little, my mother (and at least one other in the family) suspected I was autistic, but they never had me tested. My family was poor, so this makes sense. (For readers outside the US, our healthcare system sucks, and our access to said healthcare is very inconsistent and wealth-based.) Nobody ever bothered to tell me that I might be autistic, which is where the unintentional cruelty comes in. That would have been extremely useful information for me... c'est la vie.

    Flash forward a couple decades, full of mental health issues. During my brief stint in college, I boned up on psychology--partly because I found it fascinating, partly to attempt to understand the strange creatures (humans) around me, and most importantly, to clumsily try to figure out what the hell was wrong with me. I knew something was up. I'd known I was different from a very young age, but I'd thought it was just because I was smarter than most others. (Smart, handsome, and modest, too!) By the time I hit my early 20s, it was pretty obvious that I had issues, but I could never figure out what. During this phase, I actually wondered about autism, and skimmed some textbooks and diagnostic checklists, but quickly dismissed the idea. I didn't seem to tick all of the boxes, and I felt that I shouldn't diagnose myself with a developmental disorder just because I was socially awkward.

    (This is where ineptitude comes heavily into play. One thing I've learned this year is that many of the so-called professionals on autism are shockingly ignorant, and much of the literature available reflects this. At best, it's so poorly written as to be misleading, which is part of why I didn't figure out I was on the spectrum five or ten years sooner. At worst, conventional "understanding" of autism is dehumanizing and full of harmful stereotypes and dumb assumptions. I'll dive into this much deeper in another post, but this one is too long as is, so we'll move along.)

    Late 2018, I happened to work with a guy who was officially diagnosed with Asperger's syndrome. (Asperger's is part of the autism spectrum.) He didn't seem odd to me, although in a profession littered with addicts, felons, and outright sociopaths, it's not surprising that he didn't stand out as strange. One day, he happened to talk with me about some of the ways Asperger's affected him. I told him, "You remind me a LOT of me" and jokingly told him to shut up. It really did bother me a little just how well what he described fit me. I'd like to say that it weighed on me for months, and that it eventually served as a catalyst for self-discovery... but, it didn't. Lack of self-awareness let it slide blissfully out of my mind.

    My 30th birthday came and went. A few weeks later, I was talking with my partner about my mental health issues. "And what are those?" So I went down the list: anxiety, depression, anger issues, and so on. I told her I had ruled out being bipolar. "I thought for a minute I might be autistic, but I looked into it, and I'm not."

    "Actually..." (Never a good thing to hear.) "I have a friend on the spectrum. She shared something with me on Facebook, a list of traits of undiagnosed adults, and you tick a LOT of those boxes."

    "Like what?" She rattled them off. "Huh."

    I laughed. I went upstairs. Just for funsies (or so I told myself), I started reading things about autism--really reading, this time, not just skimming. I revisited those misleading checklists and descriptions, and dug further. I found material from people actually on the spectrum, who described autism from the point of view of the autist. And by the end of the night, I wasn't laughing anymore.

    That night was January 15, 2019.

    It took me a couple of months to accept it. I'd accept the idea for a few days, and then I would have doubts. "I'm not that autistic, am I? Surely very minor. Very high-functioning." (Again, lack of self-awareness--high-functioning is probably not the best way to describe my life.) I'd find some point to nitpick, some box I didn't seem to tick. Really, it was an unwillingness to accept what was staring me in the face. I didn't want to be autistic. So I'd do more research in an attempt to disprove my self-diagnosis. Invariably, I would only find more evidence in favor of it. Then I'd accept the idea for a few more days, and the cycle would begin again. (Say what you want about me--I certainly didn't self-diagnose easily or willingly.)

    This continued until shortly after midnight, March 23, 2019. I remember the date very clearly, because it was three months to the day after my 30th birthday. The point I'd decided to try to argue about with myself concerned stimming. "I don't really stim, do I? I mean, yeah, sure, I fidget a lot. But that's not what they mean. I don't 'flap my hands'--whatever that means." I decided the easiest way to settle it was to look at videos on YouTube. I searched for "stimming examples" or something like that, and clicked on the first result:


    The first ten seconds of that video were like getting punched in the gut. It hurt me in ways I didn't know I could feel. It hurts now, just typing this. Just remembering. Because that little boy in the video was me, with a quarter century subtracted. When I was his age, I moved exactly like him. Exactly. The hands, the fingers, the occasional feet, the faces... the stimming... the humming, the noises, EVERYTHING. I'd eventually stopped as I got older, and I'd forgotten all about it... but when I saw that video, I remembered it instantly, as though no time had passed. I remembered myself as a child, free, stimming, autistic, and it broke me.

    - - - - - -

    So there it is, a year late and way too long. The story of my self-diagnosis. A partial explanation for why I say that I am on the autism spectrum. There are plenty more topics to cover, and maybe the posts will begin to appear with some regularity, now that I'm not hung up trying to do this one. I leave you, my (probably imaginary) reader, with a song:
    Peter Morrison likes this.

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  1. Peter Morrison
    I had composed a long, involved response to your text here because I was so inspired by your honesty and clarity of explanation. Bravo to you. My original text flew away into cyber space - it was too long and got lost in the shuffle. In short, your experience mimics my own in many ways. I was self diagnosed and convinced I was right. A recent official diagnosis confirmed what I knew to be true. This changed my attitude in a way. I now feel I am working with good information to help me distinguish my ASD self from traits that I had always thought to be the result of environmental factors. I have greater clarity and can reinvestigate my life and actions with a certain amount of skill. It is a form of relief, and I suppose that is the only real prize that comes with knowing you are on the spectrum when you are at advanced age. I have thousands of stories demonstrating when and how ASD governed me, my decisions, my behavior, and my attitudes. So much of what I questioned about myself is clearer now. It doesn't change reality, but I am more at peace with it all. I feel like I have "done my time" and "earned my stripes".

    Your text is inspirational to me. You put into writing what I spend time mulling over in my head. Thank you.
      SolarPoweredNightOwl likes this.