Community Organizing Beyond “Officially Diagnosed”

There needs to be a “misdiagnosed, undiagnosed and suppressed diagnosis” caucus of sorts. This is important at face value, but also because it dovetails into:

– Under-representation of women and trans people

– Under-representation of people of color

– Under-representation of working class and working poor people (because of cost + misdiagnosis)

– Under-representation (and contested representation) of adult autistics in general

This also impacts on the quality of (beneficial) research, as well as the tendency for research to focus on “cures” rather than social accommodation and support across the spectrum.

The lack of beneficial research + scare tactics = the dominant paradigm around autism, especially in the U.S. and parts of Europe (but not the UK, it seems). (Don’t @ me about Brexit, I know.)

This also requires having an org(s) or movement(s) to have a caucus in to begin with, though. There’s community-based orgs — https://www.aane.org/ comes to mind — but they’re few in number.

ASAN is focused on policy and lobbying, AWNBN is focused on support and resources. All of which are incredibly important, but there needs to be more.

As per usual, the “autism advocacy” groups are actively hostile to self-advocates in a lot of cases. There’s people working to rectify that – but they’re few (if not singular) in number.

Meanwhile, “zomg the vaccines!!!” seems to have gotten supplanted with “zomg, school shooters!!!!” and “zomg, neurodiversity is a cult!!!” <- actual things that actual people say, loudly and repeatedly

Our neurodivergent selves are right here. Feel free to talk with us anytime. Meanwhile, there’s a lot of work to do, and this should be part of it, I think. 💪🏽 ✊🏽 ❤️ Onward.

Conflicts

Confession: I stink at community conflicts. For one thing, I overwhelm easy. Not that this keeps me from raising hell – if anything, I’ll go right for the oppression vector and start (metaphorically) swinging at it, even if it’s burning me out. I tend to wind up in polarized positions — I’m good with that, but it also means that the stakes are higher.

Autistic organizing feels different to me than anything I’ve been a part of politically, though. The closest thing I can think of is the trans community, but even that’s a coalitional effort, and while all of us are marginalized (seriously so), some of us are more oppressed than others, in fairly direct ways. The social dynamic seems to map to being completely fucked, a pretty big apologist, or worse – and from there, the usual range of oppression dynamics apply. Women are more disadvantaged than men, people of color are more disadvantaged than white people, poor and working class people (which is most of us) are more disadvantaged than wealthy people. My running “not a joke” joke about not being sure if it’s the 1950s or the 1590s seems more and more apt, the more I learn. There’s a lot of shit going on against us that’s horrible enough that I don’t even know to what degree I should put it on blast; if anything, the message I get back is “That’s so completely horrible, I don’t even know how to process it”. I didn’t, and I’ve been through some heavy shit. So it’s no surprise that things can wind up very, very polarized.

It’s not like other situations I’ve been in, where I was the one pointing out the inconvenient truths that nobody in some group or collective house or affinity group or whatever didn’t want to address — this is like the truths are right there on the table, in some sort of “Sauron? (Y/N)” sort of way. “Well, let’s try to be reasonable and hear all sides” doesn’t carry much weight, nor should it.

The self-check I’m doing here is that I tend to be a polarizing force in a lot of situation; it’s likely part of my neurology, as well as my background. Which, in a room full of people with similar neurologies (and frequently similar tendencies towards very strong views and tendencies to be all in, do or die as mine), could get…contentious. I’m down for it, though. ✊🏽

There are problems here that I’d love nothing more than to avoid, but I’m pushing myself to stay aware and ready about. There’s no magic potion that makes everybody who’s autistic (or another other category of marginalization and oppression) free of oppressor behavior, nor is there any spell that can make people automagically not have a social impairment.

That said, I think that trying to address social conflicts with more social rules, when someone is “impaired” in a way that affects that, is some sort of sinkhole. Saying “grow a pair” (regardless of gender) isn’t always going to work. There’s approaches that address this, they’re getting underutilized. Presuming a workable level of good faith (as in: I’d actually like to change, but I don’t know how), telling someone why their behavior is harmful, and how that can affect people as a result, works. We learn social situations, we don’t abstract them.

People can use disability to excuse oppressive behaviors as well, though. The current example I’m referring back to these days is “Brooklyn Becky“, who turned out to be alt-right, apparently.

That’s a pretty clear line, even if someone “doesn’t get the rules”. “Anybody who isn’t alt-right: come get your friend and talk some sense to them in a way that they’ll get”. Or just ignore them, because that’s crossing a line that I’m not gonna put up with, nor should anybody else, in my opinion.

The classic “Oh, that’s what that’s about! I didn’t understand how that works. Thank you.” learning pattern is a real thing — it’s just that it’s not *always* true. White people are notorious for playing “I don’t have a problem, you have a problem” games with people of color — and if that doesn’t work, they’ll start making up problems to try to force people into silence. This is far from something that’s unique to the disability rights community, I’ve seen white people in a variety of activist communities do it for years. As much as I’d like there to be an easy solution to this, I think we’re dealing with the same dynamics that exist in the society at large. It’s not pleasant to see allistic social norms, racist social norms, sexist social norms, even ableist social norms being acted upon, but what I keep reminding myself is that it’s not surprising, either — it just needs to be addressed, just as it does in any liberation movement. That’s what I’m here to fight for — the right for *all* of us to live our lives in ways that we want, free of oppression.

Stimming and the Arts

I love being a writer and musician, but there’s definitely a part of the arts for me that’s like “Can I just flap my hands and ball up my fists rather than banging on a drum? Can I just perseverate and be happily echolalic rather than learning repertoire or keeping a writing schedule?”

I’ve known for a while that I was using “acceptable stims” as a way of masking/passing – I wasn’t able to articulate (or was afraid to admit) what I was covering up, but I knew it was something. I didn’t have a full sensory diet. More like cupcakes and the occasional burrito. It was a stop gap.

I think about this a lot, both in relation to masking stims – as in, finding “socially acceptable” ways to stim, like tapping, drumming, flexing (I’m just stretching!), hair twirling, and so on, as well as in terms of how a lot of my tools and practices as a musician get in the way of self-regulating. Which in turn, makes it hard to make shit. Context shifting is a huge pain in the ass. It basically doesn’t work for me, I have to be in mode A (music) or mode B (software). Writing is better, because I can write drafts in a text editor, or by hand. I can hand-write parts as well, but it’s time consuming. Everything from music software to the instruments themselves messes me up. It’s frustrating. (Yes, I’m a trained musician, it’s not about that.)

There’s something almost ABA-like in the ways my stims got funneled into “acceptable things”. So much of what I “learned” from childhood onward was about suppressing them, or channeling them into something that was viewed as “productive”, like writing, music and drawing. When the stuffed animals (which were as some part of myself that I’m just now starting to get back) were taken away, and the light didn’t stay on all night any more, and stacking small stones became replaced with rosin and bow — something got lost, and in its place, a small corner of my mind held back something that almost feels like electrical current when it now finally flows through my arms and balled-up fists.

This is why I get a more than a little testy when people start playing “Well, you don’t have the *real* autism” games on people. Not only would I suggest getting a time machine and seeing what my shouty, stimmy, dinner-table-fleeing childhood was actually like – I’d also suggest being around for all the times when everything fell apart in adulthood and I was full-on melting down. When you’re done with that, I can walk you through my also-meltdown-laden pathway to getting reassessed this year.

I honestly fear for the autistic kids, teens and adults who have these sorts of parents lording over them, posting pictures of them to “show how autistic they are” (as if you could tell how someone’s neurology manifests from looking at a portrait photo) and wasting some portion of their day to climb into people’s mentions on social media and heckle them about how self-advocacy is somehow harmful, misleading and delusional, when that’s flatly not true.

If this is you? Let your child be a child, for fuck’s sake. I know you’re frightened for them, but don’t mourn for us, either. If that’s incomprehensible to you: you need autistic friends in your life.

Anger!

I was dancing to “Kill V. Maim” (as I do) and when the chorus kicked in, it came popping right out.

All the repressed pure anger leaked out of me.

This ties into masking for me. especially “The Anger that Goes Straight to My Hands”, but the rest of it as well.

I’m not saying that it’s valid to go off and whack someone. ;p Although that happens as well, I think it’s important to not deny that. Your reflexes are your reflexes. It’s a mistake, but shit happens.

What I’m talking about is more like this:

“If I didn’t hold on tight and ride out the physical impulse, I would lash out with hands at whatever was nearby, punching, throwing or breaking something to dissipate the energy in my hands.”

“When I read stories about children lashing out violently, I wonder if this is what they’re feeling. Maybe it’s not anger in a traditional sense but the need to release a sudden incomprehensible surge of energy.”

“In the same way that I experience pure undistilled happiness, I also experience a very pure form of anger. It starts in my brain and terminates in my hands. It’s reflexive. White hot. Short-lived. Irrational. More chemical or electrical than emotional.”

It definitely maps as an analogue to pure undistilled happiness for me. It was like this really clear rage. My fists balled up and I was *flailing*.

I’m not gonna lie, it felt *fantastic*. Like I get why people like hardcore now.

I’d always wondered why I didn’t like hardcore, but *nothing but guttural gothic screaming* was like “Oh yeah, this is good. Solid approve. 10/10”

It reminds me of this “BZZZZT” that happens if i’m shutting down or cooling off, and this…angry, visceral muck is right beneath stimming hard. My arms are flopping and flailing, but sort of mindlessly, rather than *spikes* *pure elation* or *spikes* *white-hot anger*. Just sort of ~ tranquilo ~, then up comes this repressed, nihilistic muck. It freaked me out at first, but I’ve learned to work with it, to embrace it.

I think of it like electricity that’s being held back behind a switch – if it can’t release, the current can build up, and starts eating through around what’s surrounding it.

My wondering on this: does this contribute to depression, and specifically, feelings of worthlessness? it seems like it has similar qualities, but I wouldn’t know. (Autistic burnout, that, though. Definitely.) I don’t “do self-loathing”, but i definitely have a corner of my psyche that feels like that, until it finds an outlet.

More infos:

Anatomy of a Meltdown

https://jeanettepurkis.wordpress.com/2018/05/16/too-nice-avoiding-the-traps-of-exploitation-and-manipulation/

https://autisticsciencelady.wordpress.com/2018/08/14/autistic-burnout-regression-and-identity-crisis/

CW: suicide, some self-negating takes (that have a context, see the above link to cross-reference)

An Autistic Burnout

Quick update

I’ve been slow on posting for the past month because reasons, but here’s some things that I’m working on:

– Origins of ABA and its relation to LGBT conversion therapy

– The realities of being autistic in the U.S. school system

– The lack of diagnosis and subsequent public awareness of autistic women and people of color

– Shared realities and differences between the HSP and Autistic communities

– Lived experiences and realities of undiagnosed and diagnosis-suppressed autistics

There’s a bunch of content up there already, though. Feel free to have a look. 🙂 Thanks!