I continue to be amazed by how much superstition and confusion and really, really bad information there is about Autism and Aspergers.
I don’t do much Googling of autism, because there is just so much one-sided information that has a whole lot of money behind it. And I don’t go on Facebook hardly at all, because there are so many neurotypical people who are affected by it, who all seem to be in a state of perpetual high-alert… and yet I don’t see a lot of effort made to understand autistic spectrum conditions at the very core. Maybe it’s happening, but I don’t see it.
And I don’t have the energy to seek it out. That’s what Twitter’s for, I guess.
But I’ve had to stay off Twitter more, lately, as I just get too drawn into it, and I lose track of everything else that I need to be doing. It’s a vicious cycle. Plus, Twitter on my tablet has somehow slowed to a desperate crawl and it’s hard to use. So, I un-installed it, and now I can listen to music without the constant interruptions from other apps connecting in the background.
I did a lot of stuff, this past weekend. Pretty much off my schedule. And it kind of blew up in my face with a couple of meltdowns on Saturday morning and Sunday evening. I’ve been melting down more frequently, in the past several months, and I need to do something about that. I know what things lead up to meltdowns, and I need to actively manage them, for my — and my partner’s — sake. She’s back to being afraid of me again. It’s been years, since she was really afraid of me, but apparently, my behavior has been intimidating enough for her to feel like she has to constantly walk on eggshells around me and “manage” me.
This is not a good feeling.
So, what to do? Well, first off, I need to realize just how much this summer is kicking my ass. It’s HOT a lot, which means my clothing is uncomfortable — any clothing is uncomfortable. Tempts me to join a nudist colony. Also, I’m not sleeping all that well. I crank up the air conditioner, but it doesn’t always work. I sometimes lie in bed for an hour, trying to get comfortable, before I can “get down”.
Aside from the heat, there’s the light — and activity. Bright sunlight flashing at me from every reflective surface, especially when driving, really sets me off, as I’ve become painfully aware, lately. Running errands on Saturday morning, it was a freaking gauntlet, dealing with sunlight glinting off every chrome bumper or shiny glass windshield / window. I really noticed it more than usual. All the motion, all the movement… traffic, people on bicycles and motorcycles and walking along the road, birds flying around and singing/calling and rabbits running across the road… You’d think they didn’t have anything better to do, than just be and do what they wanted to be and do.
And of course, I ended up frazzled and frayed, and then I talked to my disabled sister about old family stuff that she’s dealing with. She’s got a ton of health issues and she’s waiting to hear back from the judge about her Disability claim, which is stressful for everyone, because she’s on the verge of losing her home, if she can’t get some financial relief. I helped her out a little bit — enough to keep her afloat. That was the least stressful aspect of our connection. Doing a retrospective on how our parents did such a terrible job of taking care of us, beyond keeping a roof over our heads and food on the table… well, that was pretty grueling. And I’m still feeling the burn on that one.
The main thing that made my childhood and youth and early adulthood so demanding, was the total, utter lack of information about autism — as well as the comprehensive dearth of understanding that most of us were / are on the spectrum. I look around at people today who have access to autism information, who have diagnoses, who have resources at their disposal — if not social services, then at the very least social media support and an internet chock full of information from ActuallyAutistic people about what it’s like to be on the spectrum… what helps, what hurts… etc.
And I’m confused. Because growing up on the spectrum sucked supremely at times, because there was no awareness. And I wonder what kind of a difference it would have made, had we known then (40 years ago) what we know now. My mother could have understood that her intensely impacted sister was not just trying to be difficult throughout their childhood — she needed help and support and understanding. My mother might have gotten a clue about her own sensitivities and needs for support and more actively managed her situation. She might have realized that I was in a different “quadrant” of the spectrum, in terms of sensitivities, and not been as rough with me all the time.
I might have been more cognizant of my balance issues, my vestibular instability, and not taken as many chances with climbing and jumping and doing all that stuff that got me injured. I might have had a way to understand why I was melting down the way I was, and found ways to not humiliate myself on a regular basis. And school… what might that have been like, had people realized that my talents were starkly “uneven” for a reason other than laziness? My fearful siblings might hate me less, than they do today. And my one sister I talked to the other night might have gotten more consideration from my autistic parents, if they’d realized that they had difficulties coming to terms with intense emotion and could factor that disability into their interactions with her — with all of us.
Just a little information can go a long way. We didn’t have any, back then. None. Zip. Zilch. Nada.
And I look around me, now, at people who have worlds’ more access to info and insight than we ever hoped to have, back then, and I wonder — What The F*ck is up with that?
It’s never easy, of course, and I’m in no position to blame or judge. But seriously, there’s something amiss, when so, so many ActuallyAutistic people are talking in detail about their lives, offering insights and information, and there are organizations and researchers who are pursuing productive lines of investigation (outside the whole vaccination controversy) about how autistic lives can be understood and supported… and yet, we’re still “lighting it up blue” and praying for a “cure”.
It’s just kind of embarrassing, to tell the truth. The U.K. (and much of northern Europe) seems decades ahead of what’s going on in the U.S. Okay, so France has a bad habit of committing autistic people to mental institutions, and since I don’t live in Europe anymore, it’s no good to rant about it. But it seems like the U.S. is stuck in the dark ages, still. And people in a position to change that, don’t seem to realize it — or realize that it needs to change.
But it does. I’m so sick and tired of reading accounts from people who have been misunderstood, poorly served, marginalized, and disenfranchised from their own lives, simply because their brains work differently than others. I’m sick and tired of hearing people wail and moan about the awfulness of autism, when they’re actually making the problems worse by not paying any attention to what their kids are clearly telling them. I’m sick and tired of people stressing us out constantly with the nauseating perpetual motion machine of hype and hyperactivity, the non-stop adrenaline push, the incessant noise and light and activity… the verbal bias that rules the mainstream world… and then wondering why, oh why, we melt down.
We know so much more than we used to. Why is that knowledge not modifying any mainstream, neurotypical behavior? In some places it is, with some grocery stores offering quiet hours in the U.K. But in the vast majority of places, nobody seems to really care at all that they’re creating toxic, needlessly taxing environments for people who are more sensitive than they are.
It’s just so irritating. And it’s needless. Especially for people who live with autistic folks, who flatly refuse to adapt their behavior or their environment to the ones who may need anywhere from just a smidge of accommodation to full-on re-configuration of the environment to feel human and function at their best.
I’m in a terrible mood. This summer is interminable. There are at least five more weeks left of it. August is my least favorite month of all. Even less so than March, which truly sucks in this part of the world.
Enough. I’ve ranted enough. Time to find solace in my routine.