The Phoenix
by Scott Hardie on September 2, 2024
This is the last of four weekly blog posts about diagnoses that have completely changed my life since the pandemic started, after The Dragon, The Tiger, and The Serpent. I saved the lightest one for last.
Many people who discover later in life that they're neurodivergent have reported spending years aware of the symptoms and signs of their condition without ever considering that the description might apply to them, and when they do finally realize, it's as if a thousand mysteries are solved at once: Things that never made sense are all suddenly explained. An endless list of "why am I like this?" questions finally have answers.
That's precisely what it was like for me in the fall of 2020 when I realized that I'm on the autism spectrum. I have not pursued a formal diagnosis, since that process takes years that I don't have (although I have scored 141 or "strong evidence for autism" on the RAADS-R test), but the evidence is overwhelming enough for me to make a self-diagnosis. And that self-diagnosis has been an incredible relief. It has helped me move on from countless past incidents and behaviors about which I beat myself up or doubted myself or questioned my sanity, and life post-diagnosis has been so much more smooth and serene. I still make mistakes because they are inevitable, but I am at peace with them. At least I understand why I'm so weird.
Some of the mysteries are explained by differences in sensory input processing. I enjoy food based on its texture instead of its taste. I cannot detect smells when there's noise, because my brain cannot process both inputs at once. I am often dehydrated because I do not sense my own thirst. I cannot concentrate on anything if my shirt is itchy or food is stuck in my teeth or my hair needs to be washed or something is moving on my screen, because my brain cannot tune out this sensory information long enough to think; it's like trying to recall a different tune when you're sitting in front of an orchestra playing at full volume. Having a condition that causes constant itchy skin, when itchiness interrupts your concentration and your ability to concentrate is already compromised, is so much fun!
But at least now, I finally understand my lifetime of fidgeting and fussing and rarely feeling comfortable in my own skin. And it allows me to make adjustments: I have learned to embrace clothing that fits comfortably (thank goodness for the pandemic making sweatpants semi-acceptable), and food that feels right in my mouth without needing a toothpick afterwards, and simple adjustments that quiet the intrusive thoughts, like simply putting on a baseball cap to go out instead of it occurring to me a thousand times that cowlicks are making my hair stand up the wrong way today. SNL's Stuart Smalley was a joke character, but he was right that it's easier to put on slippers than to carpet the world. Small adjustments just make life easier, even if they seem strange to other people; that's simply the price to pay. My professional colleagues in web development used to mock me for preferring simple text editors rather than advanced coding software that would auto-complete what I was typing and insert all kinds of brackets & indentation for me and pop open suggestions all over the screen, but I found it impossible to concentrate with all of that nonsense stealing away my cursor and obscuring my view, and I wish that I had understood my neurodivergence earlier.
Other mysteries now make sense because of differences in communication. I reflexively avoid eye contact and look to the side, which makes people sometimes react as if I'm lying, and other times I get lost in thought and stare off into space absent-mindedly, without realizing that I'm staring *at* someone and making them uncomfortable. I cannot read faces very well at all, including my own in photographs. I talk too long and loudly on subjects that fascinate me without registering disinterest in my audience until it's far too late (and the fact that they've become an audience, instead of semi-equal fellow participants in shared conversation, is really the problem). I cannot perceive when someone doesn't like the music that I'm playing or the suggestions that I'm making. I'm incredibly literal, taking words exactly as they are said without reading between the lines, and when the words alone don't compute and I try to assume what must be implied, I assume wrong. Oh how I wish neurotypical people would just say what they mean instead of using layers of obfuscation and implication as a form of etiquette; it's maddening! I prefer written directions because I can re-read them a dozen times until I'm certain of what they mean; just hearing verbal directions once will drastically increase the chance that I'll misunderstand.
The worst feeling having this condition is that I've hurt so many people, and I'm so sorry about it. There are times when I've said something that I thought was complimentary or neutral about someone, only for everyone to get mad at me and ask me how I could be so heartless. I've been called a cheat at games when I did something that was not expressly forbidden by the rules and that I assumed was fair play; I wasn't trying to "get away with" anything. I've been perceived as uncaring or lying or insulting or avoiding when I was in fact following entirely different impulses, only to learn years later that people were hurt by my actions or words. Extremely rarely in my life have I intended to be a rude jerk on purpose, but countless times have I been that way by accident, all because most humans follow certain codes for unspoken communication and I never received the memo explaining them. And it goes the other way too—I've sometimes perceived insults or challenges or hidden messages in neutral statements, for instance—but I feel far worse for others than for myself. As frustrating as it is to keep wondering, "great, what did I do this time," at least now I have an explanation for why I keep ending up in this mess.
I don't feel like writing a long list of examples, so let it suffice to say that for any Funeratic member reading this, I recall at least one interaction in our history together where I misunderstood you or didn't listen to you or must have seemed strange to you, and I'm sincerely sorry for making you feel hurt or at least uncomfortable. I can't stop acting this way, but I can understand it better now and integrate it into my life and move onward. It feels liberating to be on this side of the self-diagnosis, and it's the only diagnosis recently that I've been happy to receive.
Five Replies to The Phoenix
Scott Hardie | September 2, 2024
One last thing: I'm well aware that within the ASD community, it is frowned upon to consider a self-diagnosis to be valid. If anyone can just "decide" that they're autistic because they feel like they are, this erodes the importance of a strict clinical diagnosis, which is necessary for assistance, benefits, and plain good will. It's akin to self-declaring that your household pet is an "emotional support animal" because you want to take it out in public, which is injurious to people who depend upon a distinct class of certified service animals to exist. (And if anybody wants to come at me for "comparing" people with autism to animals, I give up.)
In my case, I wanted to pursue a formal diagnosis, but I quite literally don't have the time to get one. My therapist shut it down when I tried because there would be no point, not just because I wouldn't finish the long process but because I wasn't seeking any kind of public assistance for having it. All I want is peace of mind, which self-diagnosing gives me. I truly mean no offense or damage to anyone with autism. To be crystal clear, I'm not saying that I definitely have ASD; I'm saying that I have a combination of symptoms that correlates very highly to ASD and makes it probable that I have the condition.
Denise Sawicki | September 3, 2024
I am glad you found this out about yourself and it clears some things up for you. As you probably know, I can definitely relate to the troubles knowing unwritten rules of communication, and being thought rude. But not sure I have much else in the autism spectrum, if I have a diagnosis it is probably something evil rather than something different but cool! :D
Lori Lancaster | September 5, 2024
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Scott Hardie | September 8, 2024
Thank you both! I appreciate the feedback. Talking about this makes me feel sane. :-)
Denise: Maybe it's only me, but I think most people don't realize how many unwritten rules of communication undergird our society unless they find themselves decisively on the other side of those rules. It's truly baffling that we operate on assumptions, and work around each other's assumptions, and make assumptions about each other's assumptions about our assumptions, instead of just saying what we mean. If you speak honestly, you are assumed to be a liar. If you are silent, you are assumed to have spoken volumes. It's bizarre that this is considered the normal way to interact! With my other conditions, I have become more prone to having trouble correctly understanding things that are said to me, so lately I just let things go more often than I ever would have in the past; I just don't have the spoons to put into clarifying every last interaction and making sure that we understand one another completely.
Lori: Yes, the fact that neurodivergent diagnoses are becoming so normal and commonplace for today's children is a wonderful thing. I see kids today being raised by parents (my friends and family) who mostly get it and understand why the child is like that, although I have observed some shame, as though there's something wrong with having ASD; it's just different, not wrong. My parents, especially my father, thought they could berate and punish me into acting appropriately, and I wish I could go back in time and hand them a simple manual for the way my brain actually works. As for a genetic link, both of my parents had signs, particularly my mother, and I've wondered if they passed it on. Parents being out of their 20s also raises the genetic likelihood of their children having ASD and mine were 38. I haven't experimented specifically with gluten, although I might well try; I've had quite a bit of luck with trimming animal-based products from my diet which has led to a night-and-day difference in energy level.
Seriously, I'm grateful to both of you. Not everyone I've spoken to about this is receptive or understanding, but it's a relief whenever someone is. You are both kind to talk to me about it. :-)
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The creator of Funeratic, Scott Hardie, blogs about running this site, losing weight, and other passions including his wife Kelly, his friends, movies, gaming, and Florida. Read more »
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Scott Hardie | September 2, 2024
Strangely, this was the most difficult of the four blog posts for me. I wrote it three times, trying to bring out the humor in the situation, since I find this amusing in the same way that you finally understand the punchline to a joke years later and isn't life weird like that? But of the countless examples of incidents in my life that finally make sense now—I'm not exaggerating when I say that there are many hundreds, possibly thousands—none of them feel funny in writing. They're more of the you-had-to-be-there kind that depends on seeing them through my eyes and worldview and life experience. And some are just downright sad, like times when I was punished harshly as a child for not being normal or "getting it." I finally gave up on trying to be funny and just wrote it like it is. But still, even if I cannot illustrate the levity that I feel with examples, I gotta say: This self-diagnosis is truly a joy to me, especially compared to the three downers that I wrote about in recent weeks.
What is autism spectrum disorder like? Everyone with it has a different combination of symptoms and their severity, so I can only speak for myself, but in my case, this Venn diagram sums it up well. I have nothing in the entire blue ADHD circle (if you allow that my working memory and processing speed have been impacted for other reasons), but I have almost all of the pure yellow Autism part of the diagram, and almost all of the pure red Giftedness part, and entirely all of of the orange part between the two. (Much of my writing in The MCU Project could be summarized as "too much fascination with theory" and "too highly developed morals.") Some of the individual traits depicted in this diagram are so generic as to be useless (who doesn't have a wide range of interests?), but the real meaning is in the overall pattern. As a total package, it's about 95% accurate in my case.