Category Archives: Disability justice

Autistic self-affirmation superstars vs. busy body identity policing bullies

TW: venting, community dynamics/conflicts, bullying, identity policing, gaslighting, curebies, counter-aggression, racism, ableism, police shootings, violent assault and murder of autistic people, “bad autie” stereotype

Fair warning: this is a much harsher tone than what I usually post here.

Every community has their self-appointed identity police, that constantly ride people for not being <thing> enough. I’ve been carefully considering the situation around this, at times in detriment to my own health and well-being. Given that I appear to be far from alone in this unfortunate outcome, here’s my carefully considered summation:

Fuck off, you abusive curebie dungnuggets. I don’t care what you think.

I know that there’s people who think the opposite: that there should be far more gatekeeping of who is and isn’t Autistic, not less, but frankly, again: I don’t care. You don’t get to control the rest of us like that, it’s cruel, if not sadistic. I refuse to even entertain this sort of assimilationist, supremacist, gaslighting as fuck garbage thoughts past that. If every once in a blue moon, someone sincerely questions if they’re autistic, then finds out that they’re something else, that’s *COMPLETELY FINE AND HAPPENS IN ALL COMMUNITIES*. A few very annoying VOCAL members of our community act as if there’s never been a single straight person who was “lesbian in college”, and *SOMEHOW*, the LGBTQIA+ community is doing just fine, despite this. (Don’t assume that coming out as LGBTQIA+ is less life-changing and critical than “coming out” as Autistic, either. They’re both significant life decisions, with their own benefits and costs.) Autistic-questioning people aren’t flooding the gates, that’s some terf-like nonsense, settle the hell down, please.

I’ve seen this happen in the LGBTQIA+ community as well. “Who gets to belong? Who is really trans? Do you have to have surgery to *really* be trans? Are enbies valid? Is “autism is a gender” valid?” Sometimes, it can feel as if Tumblr has taken over the whole damn planet.

That said, I got this sort of thing cleared up for myself years ago, when I read this article. (Fair warning: it’s long. 6,000 words long.) We may or may not be past the point of having to guardedly form ourselves as a (figurative) nation, but I’m very certain that policing who gets to be Autistic is toxic, and benefits nobody, including the people insisting on trying to do so. (If this is you: think of all the times you could’ve been stimming or happily enjoying interests instead of obsessing over who does or doesn’t belong.) I much prefer Amy Sequenzia’s approach, which is also the position that ASAN takes, and that many members of our community (and researchers) share as well. *This* is how we learn how to share and grow together as a community – and in turn, increase the probability of being able to shift public opinion of us in our favor, by fostering a mutually supportive and beneficial community for *all* of us. What policing who is or isn’t autistic does is reinforce the idea that being Autistic is something undesirable, because <sarcasm>after all, we’re made up of sufferers and Potentially Dangerous Visual Clickbait, erm, Persons™</sarcasm>,  not a vibrant community of individuals, each with our own unique life experiences.

“But really, what if someone’s just faking because they think autism is a fad?” Are you kidding me? Autism has never been a fad. (I swear, if you compare this to white people appropriating Black or brown experiences, my mixed-race ass is personally going to stuff a smelly tube sock in your “stfu, racist” mouth.) Every group of marginalized and oppressed people has their “what if we’re all like you, a little?” moment in the media spotlight, and that moment has mostly passed for us (and was barely a moment – a mostly shitty moment – to begin with). I’m a *lot* more concerned over the tendency to frame us all as dangerous or even murderous (cliff’s notes version: we’re not only not dangerous, we’re far more likely to be violently assaulted or murdered than the other way around). This is patently obvious to anybody who uses their preferred search engine to find out.

There is a standing bias against people self-dxing. This shows up in subtle ways as well as obnxiously obvious ones (as noted above). “Really, being clinically diagnosed was the best thing that ever happened to me. It’s the way forward.” No, *informed self-awareness and acceptance* is the way forward, how that happens depends on someone’s life situation. Not everybody gets “caught” (word choice deliberate) by the school system, not everybody can afford diagnosis, not everybody sees a reason to “confirm” what they’ve come to on their own, and who knows how many of us are in some sort of liminally autistic void between the societal goalposts. It shouldn’t be anybody’s job to decide that someone isn’t Autistic, “officially” or not. That ultimately is a personal choice, even if there are differences of opinion, clinically or on a community level. Go live your own life, we already have way too many people trying to control (or end) ours. Priorities.

What if we talked about being Autistic as a self-affirmation process, rather than diagnosis? By which I mean, whatever community-based tools and *actually supportive* community processes we have in place to figure out if you’re autistic, that’s fine, as is encouraging autistic-questioning people to take their time and do their research, and from that, choose whatever diagnostic pathway is best for them, including not getting clinically diagnosed (or even, depending on the person’s situation, even letting other people know that they’re Autistic, on the basis of *their* needs, not someone else’s). (BTW, this is no different than the process for people who come out as trans. Again: life-altering choice.)

Self-acceptance is where the actual healing happens, regardless of age or background. Whether that’s by doing a well-researched self-diagnosis, via a clinician, or both — no matter if you’re six, or 16, or 36, or 60, or 100, your life is yours, you Know Why, that’s enough. Welcome to our community.

“Shoes off, fists up”: a hearty fuck yeah for public stimming and righteous, focused anger whenever and wherever we damn well please

preface: like Lydia Brown, I’m not posting this as a call-out of Dr. Loftis. i may not be *thrilled* about the things she appears to be saying and inferring, but that’s different.

i read an article by Lydia Brown about organizing in the neurodiversity movement recently, it’s good and i definitely recommend reading it.

however. having an academic-tinged debate over where and when stimming is valid, and what stims are valid when, and how much, and in what context, and of course, i’d never tell anybody not to stim, but have you considered…

*record needle scratch*

i’ve considered your consideration and chose to ignore it!

that’s sort of crass, admittedly.

*turns off the PA system, walks off the stage – and my parenthetical high horse.*

I don’t like respectability politics. we definitely, as Lydia’s response notes, “need to have our shoes off and our fists up”. that said, i have some thoughts about how to figuring out *on your own* what’s ok or not ok in terms of being “performatively autistic”, which i’ll get into, but in terms of stimming publicly?

stimming is great. do it whenever and wherever you can do it: if you choose to, if you need to, if you have no control over it. it’s *yours*, not anybody else’s. stay safe of course – don’t become a target for violence, either from the police or abusive people in general – but otherwise? go to town.

we get enough pressure to not stim, we definitely don’t need “stim policing” as part of our community work. stimming is valid because it’s valid! if you stim to self-regulate, if you stim because it’s involuntary, if you stim because it feels good, if you stim and feel guilty or ashamed, regardless of whether or not it’s a so-called choice: you are loved. do what works best for you, so we can all celebrate (and fight) together.

there’s a way that doing organizing work, especially in activist and academic circles, can turn everything into an endless rehashing of debates, both public and private – when the answers to problems have already come up, and even been addressed and resolved years ago.

the “self-narrating zoo exhibit” critique is part of doing productive advocacy work. it allows us to figure out “how much is too much” on our own, and when it gets to be way too much (as is the case with certain well-known authors, who use their personal experiences as a sort of bully pulpit to bug at the rest of us, especially those of us who have regular or daily support needs), *then* it becomes a community issue.

in contrast, calling on us to constantly self-check if our stimming is “performative” is more like an invite to nervously wonder if we’re doing it right, if we’re lacking authenticity. i know that’s not the intention, but it’s entirely possible that it’ll get taken that way. i’ve seen this happen a lot in activist circles – suddenly, whatever is being critiqued in specific terms becomes “don’t do that, it’s bad”, in general. people don’t necessarily even know or remember why it started – it becomes “the way things are”. it can become a sort of zoo exhibiting on its own: “look at me, not stimming in public, very politically correctly.”

further, it’s not easy (if not impossible) to tell if something’s performative, in practice. Lydia Brown mentions figuring out stims in adulthood that they didn’t do as a child – I think that’s enough. as they note, stimming is joyful, it’s regulatory (and many other useful things). i’m not willing to subscribe to a vague “you know it when you see it” set of social rules around something *that is one of the most healthy, empowering, self-regulating, joyous, fun things that we do as a community*. we need to be creating spaces for us to stim more, not less! as well as creating spaces and processes for people to reclaim what we do with our autistic bodies.

(an aside: i would add “bad stims” to that list as well. getting hit by a flailing arm can be worked around, traumatizing someone to the point of having PTSD, or worse, can not — and for what? one of us trying to get our needs met, and not being listened to, respected and worked with in a positive manner.)

here’s another thing: i understand Lydia’s need in context to call attention to affirm stimming as an adult as a conscious, deliberate decision. that’s 100% valid as well. i also refuse to quantify stimming that way. i have stims that i suppressed and/or redirected since i was a child, and reclaimed in adulthood. (i grew up in a “quiet hands, look at me when i talk to you” household.) hand-flapping in particular: i’d redirect my very stimmy hands into tapping, or drumming on things. for me, that meant that i was fidgety a lot, because while it’s possible to drum…a lot, that doesn’t always “fall between the cracks” in public any more than flapping does. so i hid. hid, and squirmed.

certain *ahem* unfair people can and will come off with a sort of “a-HA! NOT VALID!” accusation around the process of *reclaiming* stims, if not stimming in general. just like they do with anything they can get their grubby, ableist paws on, in order to try to negate our experiences. as Lydia notes:

“When those of us who choose to publicly and intentionally stim do so, we are not inauthentic or fake, but we are giving ourselves permission to enjoy bodily movement forms that are peculiarly (though of course not exclusively) autistic, and to incorporate them into our palate of expressive communication and self-regulation. Doing so for political reasons does not ignore that neurotypical and other non-autistic people will almost certainly misinterpret it, or attribute horrible ableist meanings to it, but rather, is a direct discursive challenge to that kind of ableism.

It is a political choice, because it is choosing to be openly and unapologetically autistic. Being neurodivergent in public, ever, is putting oneself at risk. And if we’re choosing to stim in public in a way we didn’t do intuitively earlier in life (or had deliberately beaten or ABA’d out of us, in some cases), we are of course aware of and assuming that risk. We talk about the concept of “dignity of risk” in self-advocacy for a reason.”

i’m in the “went through ABA, coercion and abuse” category. i didn’t “choose” shit, it got forcibly programmed out of me — or they tried to do so, for a time, and thankfully, i managed to hold onto enough of myself to not be fully moulded into compliance — and i *choose* to be politically engaged, at times, in public, as an autistic person, including stimming. (it’s also personally necessary, as part of my healing and reclamation process.) is it acceptable? respectable? no. it’s a form of self-advocacy and reclaiming of space in a deeply ableist, neurotypical society. someone has to do it — if we’re all about being respectable, we are calling for those of us who can be out publicly (by choice, necessity or both) into a neurodiversity lite <link> closet! this isn’t progress, it’s regression. we stim because we stim. again: that’s enough. (that said, as a brown, trans/queer, intermittently non-speaking, definitely not “table ready” Autistic person, I’m aware of my surroundings and the choices that I make — I hate suppressing stims, but I’ll do it if it comes down to that or risking my safety — but that’s *not* the same as “be respectable and don’t reclaim space as an Autistic person”.)

having been in and around the trenches of the trans community, as a publicly visible and out trans/queer/intersexed person, since the late 1990s? what respectability politics as an overarching rule, as opposed to a contextual strategy gets us is assimilationist, exclusionary nonsense like transmedicalism, *NOT* cooperative partnerships with allies. actual community-building work is usually done by self-advocates and community organizers, not apologists or hostile detractors. assimilationist approaches are a mistake and will come back to haunt us if we let this become the norm even more than it already is.

that all said — i believe in us! we’ll get there. stay strong, friends. ✊🏽