My Autism Diagnosis Is Both Damnation and Salvation
Life can be so bizarre.
Last week, I was rather abruptly diagnosed with autism.
The fault for this sudden and unexpected development was entirely my own: As the eldest child/daughter, a former "gifted kid" who is now on an absolutely wild spiritual journey and is honestly still kind of reeling from an ADHD diagnosis a year and a half ago, I really should have seen it coming.
All I'm missing is the anxiety.
It's never easy to absorb any new diagnosis. And I admit this one's pretty mild: It's not really a physiological health problem. It won't kill me. Still, I'm reeling. I'm adjusting to a whole new way of thinking about myself and how I behave in the world—and how the world behaves back toward me.
I mean, this was not on my bingo card at all.
But hadn't I always known there was something strange about myself? Haven't I always known something didn't quite add up—something I could not name, but that seemed to sort of name me? Haven't I been surprised—no, downright baffled—at people's actions and reactions for decades now, at home and abroad; in English or in German, French, or Spanish?
Haven't I felt that if I went through my life guided solely by my own instincts, I'd be forever misunderstood, mismatched, misaligned—with everyone? Indeed, haven't I learned, in many cases, to mistrust those instincts and do the opposite?
Perhaps if I had experienced a little more anxiety, had been a little more critical of myself instead of being so dang optimistic, despite what I understand is clinically referred to as a shitload of trauma, I might have felt some impetus to track down answers to a few questions that have been bugging me for a long time now:
Why do I have a perfectly intact memory of realizing, around age eight, that I didn't really know how to act—just, in general—and so making a conscious decision to learn from books about girls I wanted to be like? And why did I keep doing that until—well, what day is it?
I guess I thought everyone did that. (You know they didn't, my conscience whispers.)
Why do I go through micro-obsessions like other people go through a carton of soda? Why is it that for one week, I eat nothing but spinach-artichoke dip, only to wake up on the seventh day, disgusted by the mere sight of it?
Why do I check out, for instance, Mafia books and watch Mafia movies nonstop for two or three weeks—even plotting out a book I'd write on the subject—and then suddenly and inexplicably find myself bored to pieces? Why do I keep accumulating piles of art supplies for projects I was all gung-ho for at the time of purchase—and then never use them?
I guess I ... thought everyone did that? (You know they don't!)
And why can’t I maintain eye contact with people I'm talking to? It actually hurts! And why can I smell it the moment something in the fridge goes bad? And why do I have such strong, almost violent aversions to different foods, phrases, and smells? Why does it make me throw up to feed my dog her revolting canned slop?
Now this, I admit I know not everyone does. I doubt anybody really savors the scent of wet dog food, but I don't think it makes everyone lurch, heaving, toward the sink. Why should I react that way?
The answer is, in a word, autism. I'm autistic.
Which is to say, it's just how I'm wired. And it's not a bad installation job—I know. It's just a different way of being, etc. It's so important not to call autism a handicap! Absolutely not. It's a gift! It truly is a gift, right? And we're all just magical fairies and elves, stationed here and there in people's lives to make the neurotypical experience more whimsical.
Never mind that we're too scattered to water our plants or even, some of us, to take meds that help with certain symptoms. Never mind that we don't understand which way the job interview or the date is going, or that the energy it takes us to "mask" our symptoms and try to somehow function "normally"—whatever our understanding of "normal" may be—could power an entire city, if harnessed and redirected.
Certainly never mind the quarter of us whose diagnosis comes with intellectual disability. Shhh! We're not talking about them right now.
It's best not to talk about them, the attitude seems to be.
I don't know how good an autistic person I'm going to be when it comes to following conventions like that.
The news of my autism is still very recent, but even so, I feel myself quickly losing my grip on the euphoric "Now it all makes sense!" stage and being pulled, inevitably, toward the much less joyful—indeed, rather bleak—"My entire personality is ... disorders?" stage.
Somehow, things have gotten so out of hand in my life that I am presently 40 years old. I never meant to be 40; at least, not this soon in my life. Specifically, I meant to spend at least a decade between 27 and 29! But apparently it doesn't work that way, and being 40 happened when I wasn't looking.
And so all of my interests are the same as they were when I was 30 or 20 or 15: fashion, books, writing, history, travel, and the supernatural. At 40, it would seem that I'm supposed to be interested in high-quality containers for meal-prepping, or saving 20% on a new vacuum cleaner, or in, I don't know, some kind of china cabinet or breakfront, maybe? I seem to remember something about Longaberger baskets that kept popping up when my mom was my age. But I truly could not care less. (And yes, this is a symptom.)
Sure, I've gotten into new iterations of those same things, and OK, I've added a love of dogs (of which I was previously terrified), but I'm pretty much the same as I ever was, except for how far I have to scroll back to get to my year of birth.
Which was 1985. Back when I was in school, they didn't test little girls who were smart, highly verbal, rule followers, and people pleasers.
Or rather, they did test us, but not for ADHD or autism. They were looking for little boys who turned somersaults during storytime and children who flapped their hands and couldn't talk. Kids like me got IQ tests and extra work to do.
So there's no chance that I might have been diagnosed earlier in life. For pity's sake, my mother and her whole side of my family is practically nothing but teachers, with a school principal and onetime professor on the other side! No one was looking for this.
The next stage of getting adjusted to this is only half-jokingly said to be rage, but the above means there's nothing for me to rage about. That tracks: Anger is one of a few emotions I'm not very good at feeling, along with envy and resentment. People sometimes tell me I should feel these things, based on something that's happened that would stir anger in them, or envy or whatever, and I usually just have to sit there and mumble something about how I really think I'm fine, but thanks.
Well, actually, right now, if someone asked, I would not say I feel fine. I don't.
I feel broken.
Because although I am grateful for anything that tells me more about how my brain works, this information brings with it a flicker of shame. Maybe regret or dismay? Something in that neighborhood.
Just as I didn't have this word, “autism," to explain my weird little quirks, there have been times in my life—pivotal moments—when I didn't have any words at all.
I didn't know how to tell my father to blow his verbal and emotional abuse out his ass. He was a brilliant and preternaturally talented man, the life of the party, and also an alcoholic with bipolar disorder who thus allowed himself to say to me some of the wickedest things I've ever heard (and isn't it sweet when a woman's first bully is her dad?). In theory, I could have spoken up; stood up for myself. I was an adult, wasn't I? But he died without hearing me speak the truth he needed to hear from me.
Why didn't I have the words?
I didn't know how to tell my first husband that I was afraid we'd have to break up if things didn't change. Instead, I just left: I crept out of the house in the evening, when he was too drunk to notice me or the two giant white garbage bags full of possessions that I dragged downstairs and out the door. But he deserved an explanation.
Why didn't I have the words?
And I didn't even know how to tell my mom, stepdad, and brothers—some of my very favorite and most trusted people—what was going on. All I can say is that I truly didn't know the words to choose: Which exact ones, in which dark enough language, would explain what was happening to us there in that house, just an hour away from them? I couldn't even try. I bungled the whole thing badly, costing me a relationship with the brother who'd always been my buddy and greatly distorting the others’ opinions of me.
Why, why, why wouldn't I have had the words? Chrissakes - I'm supposed to be a writer!
See, to not be able to find words is to instead remain silent. And people believe that silence is chosen; that means “no objections.” They assume that if you had an opinion, or an explanation, or even an apology, you'd just speak up and give voice to it.
But that's not the way I've been living. Witnessing again and again, for decades, how grossly, torturously out of step I am with most people, I've learned to always doubt myself and stay silent.
I can't lay all the unsaid words at autism's doorstep. I can certainly see that I was at a disadvantage in being able to properly express them, though, and I wish I hadn't been.
But in the intervening years, I have learned that two new words apply to my life: well, one word and one acronym. And despite my direst and most loathsome, self-pitying thoughts, I do know that my personality is not just "disorders." It's also the characteristics I have valued, sought out, gathered up in a basket, and taken home to study and absorb into myself.
My personality is kindness. My personality is patience. My personality is humor and wit and faith and optimism and friendliness and spontaneity and forgiveness. There's room, though, for my personality also to be flightiness, a balance between my visceral aversions and my blessed Old Reliables, uncertainty, a tendency to disappear into myself, trauma, and awkwardness.
Life is short and life is long and life is short and life is long and life is just so terribly short and life is comically, ridiculously long.
At least, life is long enough for me to have the words now—and short enough for me to know I have to use them. And now that I've learned that I can speak up—now that I've learned I do speak up—baby, you better watch out.
Having the words: It makes all the difference in the world. Doesn't calling out the name of the demon stops him in his tracks? Yes, it withers his power and it knocks his weapons to the ground. And it unites you, the victor, with others who have survived his wrath and lived to tell the tale.
Now I know what it is that's been so different about me, all this time. I know its name. And even though I'll still be awkward and easy to startle and pretty clueless as to what other people's eyes might be saying, that's OK. We can deal with that.
Beyond anything else that I may or may not be, I know now, for damn sure, that I will be heard. Even if I have to scream.
As I indicated in a previous comment, I did not discover my Autism until the age of 55. And then, only because I had a persistent advocate in a friend. Generally speaking, it is much harder for a woman to discover, as an adult, that she has autism, due to the fact that women naturally mask their symptoms much better than men.
Also, you said you don’t have anxiety. This may be true. But I was convinced that I did not have any anxiety either. But, I do have it. Because I have alexithymia I could not see it.
Alexithymia, a subconscious survival mechanism -- which keeps you from seeing and understanding what it is you are consciously experiencing, mentally and physically -- can hide extreme anxiety from you.
The way I discovered my anxiety was to remember interactions over the years. I remembered many of the clues which point directly to anxiety. The type of reactions other people had to me. The kind of behaviors I exhibited.
I was not fully of aware of my odd behaviors when anxious, until a close friend revealed to me his observations of my wide eyed desperation when in a social situation.
Even having a strong inclination toward extreme, social anxiety, it is possible to be so comfortable around certain people that you would be the last one to leave at a party. But mostly if you have social anxiety, you either leave early, or very early.