Done with that autism spectrum “disorder” business

outlines of people in different colors

I woke up a bit irritated, today. I’m happy for the weekend, but the weather is dreary, and my shoulder hurts. There’s a whole lot of stuff I want to do, while I have the free time. But I didn’t sleep quite as much as I’d wanted to, which is problematic. Oh, well — I’ll get a nap later. It’ll cut into my plans, but so it goes.

I was also irritated about the whole designation of “disorder” that goes with autism. I got my proverbial mental wheels spinning last night, thinking about Roy Grinker’s assertion that autism is a social construct. Gah! When I think about it, it just seems like yet another straight, white, neurotypical man getting pissy about being left out, and wanting to say that a group he can’t belong to doesn’t exist, rather than accepting that he’s not part of it, and will never be, so he can’t have access to all the energy and attention he’s come to expect from the world. I hate feeling uncharitable, but honestly, the whole idea that academia can “invent” something as fundamental as the autistic neurotype… it’s both laughable and supremely irritating in ways I can only articulate in writing.

And about this whole “disorder” business… Actually, I do agree with Dr. Grinker in the sense that neurotypical society has concocted a disordered perception of autism. I believe it has more to do with society’s narrowing range of choices in terms of work, activities, etc., effectively stigmatizing, penalizing, or getting rid of the things that used to really help us live our lives as productive members of society.

Once upon a time, you could do hard physical labor all day and be a respected member of society. Farming, factory work, and other manual labor activities which help us manage our sensory issues and channel our prodigious energy, were all respected — and compensated. Now, you’re lucky if you can break even, doing many of those kinds of work. Once upon a time, you had to get up and walk… you didn’t just get in a car and drive somewhere. Once upon a time, kids played independently outside, ranging far and wide… now they sit in front of video game consoles and screens, or they’re herded into organized sports (which all seem like farm teams for pro teams, if you ask me). Once upon a time, everybody was on a schedule, and you could reliably count on things happening at pre-appointed times. Stores and other businesses were open at certain hours. Whether you were in the country or the city, you got up along with everyone else and went about your business in a predictable manner. You worked for the same company your entire life. There were structures and standards everyone lived by, and that was that. It wasn’t perfect (in fact, it caused massive amounts of suffering — and death — for people who didn’t fit the mold), but it was pretty predictable.

Now, things are different. And lo and behold, autism is popping up everywhere. Surprise, surprise. Autism and more… Disorders to the left of me, disorders to the right, thanks to the DSM. And to make matters worse, the world around us is truly, literally disordered — lack of predictable patterns, lack of standard structures. But is the problem with society and the way things are set up? Oh no! It’s autistic people! It’s mentally ill people! It’s diagnosed people! We’re to blame for making things so… uncomfortable for the “normals” in the room.

Yeah, I’m in a mood. Why not? It’s a crappy, rainy day (I know, I know, we need the rain), so why not match the weather with my frame of mind? I’ll get over it, eventually, just as the rain will pass.

Okay, back to it. Disorder. Dread Dis-Order.

Yes, I understand that autistic folks can have a whole lot of challenges (I definitely do). It can be really debilitating. And it is for me, at times as well. Yes, I get it that there’s a whole lot of suffering that happens with autists and Aspies. I get it that society has a long way to go before it’s fully inclusive (or even has a clue about us).

Nobody likes to be in constant pain from bright lights and loud noises and constant physical contact from a world that can’t seem to function without those features. Nobody likes feeling out of synch with, well, everything, and ending up each day in a depleted state. Nobody likes to walk on eggshells and constantly play catch-up.

Here’s the thing, though…

Disorder is so often in the eye of the beholder. And a lot of times, the root of problems isn’t about how you are, but rather how people perceive you… Whether or not they accept you… How they cope with your anomalous behavior / traits.

What makes it most awful for me is not so much the pain and discomfort of the condition. Hell, life is painful and uncomfortable for me, Autism or no. But the sheer volume of judgment around it adds insult to injury, and the psychic toll is far greater than any physical difficulties I experience. Yep, it’s no picnic to be in constant pain. It’s no fun to have to constantly re-jigger my plans and not be able to plan for anything, because I may have nothing left over for “extra-curricular” activities beyond my day-to-day responsibilities. It’s not much fun to have no energy left for those rare social occasions when I actually want to do something, but can’t, ’cause… well, I can’t. And living in a state of arrested development, because I haven’t had the same levels of access to information and interaction that just come naturally to the neurotypical majority, isn’t my favorite thing.

But I can deal with all that. I can manage my pain. I can manage my symptoms. I can wade through the confusion, the frustrations, the anomalies. It’s just when people around me start behaving badly, that things work my last nerve.

The narrow-minded lack of respect.

The ridicule — particularly the kind of light-hearted (but incessant, relentless) criticism of autistic / Aspergers traits that borders on really bad taste, even outright persecution of Big Bang Theory.

The lack of imagination — good gawd! the sheer lack of imagination and inability to accommodate any differences at all!

The lack of freedom, the constraints and requirements… the looks you get from people. Sheesh.

The most draining thing of all for me is just the sheer volume of social static I get from people over things as fundamental and uncontrollable to me as my sensory issues, chronic pain, and the overload I have to navigate every livelong day.

So, all that being said, here’s my basic attitude, which has been in effect for years and years, and will continue to — even moreso, now that I’ve got my autism diagnosis all sorted, April is over, and the year is ramping up:

I just don’t care what others think about me. I don’t have the time, can’t spare the energy, can’t be bothered with their static.

I’m not going to wait for them to realize I need to be accommodated. I’m telling them what I need, and I’m going to either get it, or ditch them.

I’m not going to dignify their ignorance and stupidity with any attention. If people are with me, they’re with me. That’s great. Or maybe it’s not so great. If they’re not with me, I’m not wasting my time on accommodating them. I have no time left for assholes.

Now, sure, you can think, “Well, that’s fine for her, but I’m in a different situation. I’m more dependent than she. I’m less able / connected than she. I can’t just turn my back on the world and expect to survive. She lives in America. I live in ____. That means the rules are different for me.”

And you can think anything you like. That’s your prerogative. As for myself, this all comes from a combination of things I’ve done over the 50+ years I’ve been around, carrying on in my own unique way, regardless of what others thought of me. It also comes from the wonders of menopause, which has drained the estrogen and progesterone from my body and has effectively rendered me hormonally independent.

Estrogen and progesterone are notorious “tend and befriend” seekers, and they complicated my life tremendously, biologically compelling me to seek out the company of people who really couldn’t deal with me very well. I think the same may be true of many other autistic folks (especially women) who are biochemically inclined to be more socially connected. In fact, if you want to truly and honestly examine the differences between the male and female autistic phenotypes, look at the biochemistry — and that goes for all the non-binary / trans folks, as well. Just ’cause you come into the world with a certain body that’s recognized as “male” or “female” by society at large, doesn’t mean your chemistry is going to mirror that.

I’m over-simplifying to some extent, of course. How we’re wired, and the biochemistry we “marinate” in, each moment of our lives, is far more complex than that. But it’s worth considering, even cursorily.

So, where was I? Oh, yes — I’m pretty much over the whole accommodations thing. I’m done waiting for others to figure out how to help me. And I’m done asking for their consideration. I’ve got to take responsibility for my own well-being and my own needs, and if that means I: A) engage less, or B) engage more in some unforeseen ways, then so be it.

What other people think of me is none of my business. So, I just have to go through life as I see fit. If others don’t understand or don’t appreciate my point of view, fine. Why should that affect me? What do I care, what other people think, anyway? If they’re right and/or they agree with me, that’s fine. If they’re sympathetic to me, wonderful. Then again, it might not be so wonderful, because people who think they’re sympathetic or (heaven help us, “empathic”), or who go out of their way to be that way, can get it all wrong and have no clue just how terribly wrong they are.

What is my business, is how I react to them. If someone is not intending to be an asshole (and they are trying to be just the opposite), but is coming across that way to me, I need to check myself and not meet their supposed assholery with my own deliberate assholery. People are clueless, when it comes to things outside their personal experience. So how am I supposed to expect someone who’s not autistic, not queer, not a woman, and not privy to my own highly unique range of experiences, to have a fucking clue how to deal with me?

They can’t. They can’t, and they won’t. But that doesn’t mean I need to be mean-spirited to them — even if it feels like I’m defending myself and my honor. If someone doesn’t mean to be a jerk to me, but their “sin” is one of omission and/or ignorance, I can’t get all up in arms about what a terrible person they are. Because they’re NOT a terrible person. They’re an ignorant/uninformed/clumsy person trying to do the right thing. Even if their choice of words is awful. Even if their choice of imagery is wretched. They’re still often trying to do the right thing.

Lots and lots of people (neurotypical or otherwise) tend to lack skill in many areas where I have expertise. I’m special that way 😉 and I need to get a grip and not get my hopes up about how well they’ll perform around me. Chances are, they’re going to be really clumsy — just like I get clumsy when I haven’t slept, I’m distracted, and my sensory issues are pinging off the register. But I need to exercise some generosity of effing spirit and give them the chance to be the best person they can be at that instance.

I firmly believe that people genuinely seek to be successful — especially socially — and when they screw up with me, it’s often because they’re out of their depth. They’re trying to move up to a new level, and their initial attempts are blundering at best. Yes, sometimes they can be mean-spirited assholes. But what does that have to do with me? Nothing. I just don’t have to meet them halfway — or meet them anywhere.

Regardless of what folks are doing outside of myself, I have to tend to what my interior experience is like. I’m responsible for my own interpretations of things. And I’m responsible for coming up with my own solutions. Ironically, I learned the most about how to advocate for myself from my late mother-in-law, who was very ill from a very young age. She knew how to make sure she got what she wanted and needed, and I learned all about how to interact with able-bodied people as a disabled person, from watching her tear through life like hell on wheels. She didn’t settle for being treated as “less than” by anyone — man, woman, or child. She stood up for herself. She was fierce. And she was severely limited, physically. She was an invalid. But you know what? She Tore . It . Up. She never settled for less. If anything, she pushed everyone around her to do better, be better, and also make sure she got what she needed.

I swear to god, I need to write about her, sometime. She blew away all the presuppositions about what it means to live disabled in the world.  She was disabled, but she was more able than a lot of non-disabled folks. She moved the world from her place in it — like FDR in his wheelchair. She didn’t wait for anyone to offer things to her. She decided what she wanted, and she got it. Heaven help you if you stood in her way.

So, I’m done with internalizing the messages about “disorder”. I’m done with even worrying about my “disordered” state. Please. Don’t even start with me. Look around — who’s disordered here, exactly? Nobody like me would ever have created the circumstances around us, and autism-and-all, chronic-pain-and-all, underemployment-and-all, near-bankruptcy-and-all, I’ve been putting my proverbial shoulder against the wheel of social change and justice pretty much my entire life.

A lot of shit that tweaked me, months ago, I realize was not worth the investment of energy. Getting tweaked about others’ dramas is not worth the soul-sink. I’ve put filters up on Twitter to block out obnoxious wailing and gnashing of teeth about THE END OF THE WORLD AS WE KNOW IT, as well as the dire predictions of ALL THE PEOPLE WHO WILL DIE. Sheesh. First of all… No, never mind. I’m not going there.

There are so many other places to “go”, and I need to take leave of the old, worn-out thinking that by increasing my own suffering, I’ll somehow reduce someone else’s. You can think that if you like, but I differ.

If you agree with me, then great. Or not. Doesn’t matter.

At the end of it all, what matters most is that my life is my own, I’m responsible for my own thoughts and experience and expression. The rest of it… it’s being taken care of by others who own their piece of it. If they don’t do right by their part, that’s too bad. But it has nothing to do with me — not their conceptions of disorder, their ideas of what’s right and what’s wrong, their devotion to a constellation of meanings that’s literally in a different universe than my own.

So it goes. The weekend is here. It’s time for my Saturday morning walk.

6 thoughts on “Done with that autism spectrum “disorder” business

  1. Pingback: A Little Bit of Many Things – aspiblog

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