Category Archives: Autistic community

Abuse, Autistic community, Autistic People of Color, Autvoid, Bullying, Clinical things - meh, Disability justice, Emotions, Functioning Labels, Liberation, Venting, Violence against us

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

Leave a comment

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.

Autistic community, Disability justice, Long Reads, Self-regulation, Stimming

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

Leave a comment

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. ✊🏽

Autistic community, Autistic People of Color, Clinical things - meh, Functioning Labels, non-speaking, non-speaking (at times), Self-advocacy, self-dx

autism diagnosis: deciding on pathways

Leave a comment

trigger warnings: anti-neurodiversity, anti-self-advocacy, identity policing, ableism, anti-autistic nonsense

i’m writing this in the hopes that people won’t have to learn the “terrain” of autistic diagnosis and the Autistic community the hard way, which is mostly what i did (but with a lot of help from the self-advocacy and neurodiversity communities). while i am grateful for the efforts of self-advocates who got me through it all, it wasn’t the best of experiences — so much information! so many conflicts! it can be draining. anyway, here’s the show.

when I self-dx’d, I’d been in counter-cultural movements for decades. “accepting who you are unconditionally” is something i became aware of in my teens, and that i periodically refreshed throughout my life. (i’ve come out of a *lot* of closets.)

mostly what i needed to accept and embrace being autistic was information (especially from self-advocates as well as #ActuallyAutistic people who share similar multiple oppressions to mine), and a bit of a push.

so, self-diagnose? get diagnosed “officially”? both?

*if* you can “go through the official channels”, and *if* it’s going to get you something, sure. i did and i don’t regret it. it’s also an expensive and/or arduous, time-consuming process, in a lot of cases, but it can be paper in hand.

here’s some more things about community conflicts (and solutions), in the hopes to make things easier for whoever reads this, especially if you’re considering if you’re autistic, or are recently diagnosed (either self-dx or “officially”).

get away from the people who try to gatekeep who is and who isn’t autistic as quickly as possible, unless you have the stamina (a *lot* of stamina) to challenge or confront them. i’ve seen people become very overwhelmed in comments sections, because they tried to reason or argue with people that assert that self-dxing isn’t valid, that being diagnosed as an adult isn’t valid, or even (especially from some parents in “the autism community” — as in, parents and clinicians, most of whom aren’t autistic, and many of whom are cure-focused rather than self-advocacy and neurodiversity-focused) that you can’t be autistic if you mask your being autistic. this includes people who say “neurodiversity lite” things, but make the same assertions as anti-neurodiversity people do.

this is widely accepted as being false, both by people in the Autistic community, and by the standards bodies that publish the DSM and ICD – but they say it anyway.

simply put: they’re wrong. that corner of things is a “dumpster fire“, save yourself the stress and bother, if you can.

cynthia kim addresses this as well:

Adult ASD: Self-diagnosis or Professional Diagnosis?

Adult ASD: Moving Forward After Diagnosis

also, people who are against self-dx and adult diagnosis will claim that autistic people who are inclusive of *all* autistics, are doing that because they’re high-functioning. not only is that offensively anti-autistic, and anti-disability rights, it’s also ignorant of the work people have done, including autistic self-advocates who aren’t labeled as “high functioning”.

Decoding the High Functioning Label

Living My Disabled Life: My Story Is Mine to Tell Part 3

About The Film

instead of getting stuck in the drama of all that, read cynthia kim’s excellent “I Think I Might Be Autistic“, and read or watch the blogs and videos of self-advocates, such as Amy Sequenzia, Amethyst Schaber, Lydia Brown, Kieran Rose, and Neurodivergent Rebel. if you’re non-speaking to whichever degree, read this! as well as the book “Typed Words, Loud Voices“. If you’re looking for autistics of color, Morénike Giwa Onaiwu and Black Autist. if books are a good means of getting information for you, “Knowing Why“, “Loud Hands“, “All The Weight of Our Dreams“, and as mentioned previously, “Typed Words, Loud Voices” all are excellent introductions to the Autistic community, and are self-advocacy focused. lastly, familiarize yourself with the Autistic self-advocacy organizations, such as ASAN and AWNBN.

Autistic community, Clinical things - meh, self-care, self-dx

Self-dx and clinical dx

Leave a comment

TW: anti-autistic (allist) assumptions, ableism, clinical assessment (for ASD), ABA, child abuse

self-dx is not only valid, “official” (clinical) diagnosis isn’t even an available choice for a lot of us, for a number of reasons, including economic ones, as well as numerous forms of oppressive bias. in that case, self-dx is not only valid, it’s the only option.

it’s wrong to try to invalidate people over it, and it’s a personal decision, regardless. it’s nobody’s business.

imagine if people said: “yes, but are you *really* gay? are you *sure* you’re trans?”

people in fact do this as well, and they’re also wrong!

this isn’t a complicated thing – people treat it like it’s a debate. there’s no debate.

there’s also a more subtle form of invalidation that happens sometimes:

“self-dx is valid! really though, getting officially diagnosed is the thing that changed my life. it’s so important.”

the missing “for me” at the end of that sentence isn’t a minor thing. it infers that there’s a social heirachy, relative to validation, and even acceptance.

even the term “official” diagnosis has bias in it. so, if you don’t have a clinical diagnosis, you’re unofficial? like a knock off bag at the flea market?

the best write-ups on “get diagnosed or not” i’ve read are these:

An Autistic Diagnosis

https://autisticsciencelady.wordpress.com/2018/12/21/the-neurotypical-autism-diagnosis/

if you’re able to access getting assessed: don’t expect miracles. figure out what it’s going to get you, and what it *won’t* get you, then decide. do your own research beforehand, to whatever degree is possible!

*YOU*– yes, you – are the best arbiter of your own neurology. use whatever means are at your disposal to your best possible advantage, including refusing “treatment” if it’s not of benefit to you. (this applies in general, including if a dx is being forced on you, btw.)

if anybody tells you otherwise: they’re not your friend, and you don’t owe them an explanation. period.

if someone tells you that you’re not valid because of self-dxing, of being diagnosed as an adult, of not being diagnosed by a doctor? repeat these words:

“i don’t care what you think. goodbye.”

i don’t care who is saying it. professionals, parents, *deep sigh* other autistic people.

if you can get away from them, do so, they’re being abusive and don’t have *YOUR* best interests in mind.

footnote:

when dx is decided for us without our consent, it’s frequently traumatizing.

it may be useful afterwards, especially if you’re diagnosed as an adult, or not useful at all (or even harmful, if you’re subjected to ABA) — but the process itself can come as a shock.

these two things – choosing to pursue a diagnosis (including self-diagnosis) and clinical diagnosis that’s not by choice – are not mutually exclusive! we can work together. in fact, we need to work together, to take back the media and social narratives from corrupt organizations such as Autism $peaks. this includes allies — partners, friends, parents who accept and listen to us, and work together with us as advocates.

there’s no shortage of splitters and haters over this. ignore them all, and work together on getting us all free instead.

#actuallyautistic, autistic burnout, Autistic community, Autistic People of Color, Autvoid, Self-advocacy, self-dx

life in the autvoid

Leave a comment

TW: institutionalization, false imprisonment, pathologizing, school system, ableism, oppression olympics, “shiny” aspies

autvoid, n. the place in society where an autistic person, especially someone who has been marginalized or oppressed out of support and resources, lives. think “unmasking” (or not being able to mask) while living out in the world, but without a tangible diagnosis (of whichever sort), or the words to describe what you’re going through. can also refer to people who were assessed but not diagnosed, diagnosed but not told the results, or otherwise lacking in agency as an autistic person.

i’ve lived in the autvoid a lot. a vaguely-shaped form, buying groceries and getting “inexplicably” overwhelmed. melting down. stopped by a cop, and not able to say a single word. assessed in childhood, not told the results. a lot of experiences, not much in the way of answers. that was me for a long time.

a lot of us live there. 50-60%, by one account.

some of us live out in NT society, and suffer as a result.

many of us are undiagnosed, or misdiagnosed.

some of us are assessed and/or diagnosed, but were locked out of the details. or were assessed, told, and nothing else happened. “You’re autistic, I think, or whatever. Get back to class.”

some of us live at home, sometimes, or all the time. including in adulthood.

some of us are institutionalized, or in prison.

the autvoid is a place where the very large subaltern that makes up *most* of our community lives. this doesn’t discount or erase the lived experiences of those of us who are diagnosed! people seem to struggle with this, and to be honest, i’m not sure why. it seems disingenous. perhaps they’re used to getting what they want, or are insecure in themselves? (see this post from silent wave blog for a critique of this “anti-self-dx” nonsense.) using one experience to try to cancel out another smells to me of oppression olympics. as i keep saying, and will keep on saying: “we are all part of one spectrum“.

in my view, if you’re autistic, you’re autistic. if you don’t know, you’re still autistic. if you’re being oppressed as a result, you’re *definitely* autistic. “Autistic” with a capital “A”, even. you need — and deserve — support! we just haven’t found each other yet, due to a lack of accessible, useful resources.

here’s to being found. ✊🏽

Autistic community, Clinical things - meh, non-speaking (at times), Self-advocacy, self-dx

Assessment is finished, like the first morn

Leave a comment

*cues Yusuf*

let me preface this by saying: self-dx is as valid as ever, personally, culturally and economically. fuck off if you think otherwise.

i’m diagnosed “with” ASD now, as in officially. so if/when i need accommodations at work or school, i have something to point to.

the assessment process was sort of a nightmare (stress, unfamiliar building, new people), but I did it. it was very much on the clock, which for me, just underlines the limits of what a diagnosis represents. not in terms of its accuracy (as long as they know what they’re doing), but in terms of “how much can realistically be expected to get covered, given that time = money”. it also was stressful as hell, so “more time” isn’t necessarily a solution here, either. it was just the right amount of “oh, fuck” and “oh, good!”, given what can realistically be expected.

i think it’s really important to insist, if not demand, that your needs get met as much as possible, to whatever degree that’s possible. expect to be pushed back against, highly confused at times, and feeling like you’re being gaslit.

if you need accommodations for being partially or completely non-speaking: let them know in advance! i didn’t, and i wish i did.

also, the ability to bring someone along (if possible, it wasn’t for me personally) is important as well. let them know in advance about that, too.

the self-discovery (by whichever means) to diagnosis (by whichever means) process – self-dx, getting referrals, getting diagnosed (if that’s possible and desirable) – reminds me when i gender transitioned, in a way. trans people wind up with other diagnoses (yes, gender is a diagnosis), both false and accurate (but frequently false), just like autistic people. we get revolving doored for years, or decades, in both cases. this is finally getting better for trans folks (the present U.S. administration’s chicanery and corruption aside), is in process for enby folks, and still has a long ways to go for autistic folks, women and people of color especially. it’s not a fast, or easy, process, either way.

but it’s done! done is good. i’m “official”, so in situations where that *actually* matters, i can say “i’m official” and back it up. since i live in a country where the idea of believing someone at their word when they self-disclose isn’t always common, this is important. which is exactly why it’s total bullshit that it’s not available free of charge! also bullshit: it can affect access to some forms of health care. if you go this route, it’s important to know when and how to disclose: not everybody is friendly, not everybody has your best interests in mind.

lastly, and this is really important: anybody who thinks that autistic people who have significant daily support needs can’t self-advocate at all? that people who self-dx aren’t valid, and shouldn’t be welcomed into the Autistic community as equals? that autistic adults who mask, who struggle and try and fail and sometimes succeed in NT society, or succeed and fail over and over again, because the rules make no sense, aren’t autistic at all? fucking suck my shorts, you and your pathetic hate speech campaign that masquerades itself as concern. you’re simply wrong, and need to climb off your heavily entitled soapbox. “we are all part of one spectrum“.

ok, so i’m official. /whoop this chapter of life’s journey seems to be ending, so a new one can begin on its basis.

i think Dionne Farris sums up my feelings best here. listen to the tracks for the full feeling and sentiment.

Hello Morning, Now when does the fun begin?
Goodbye Morning, Sorry it had to end
But see I cried just a little too long
Now it’s time for me to be strong

Everything’s so crystal clear now
All I needed was time
Everything’s so crystal clear now
I’ve cleaned my mind

autistic burnout, Autistic community, Long Reads, Neuroqueer, Self-advocacy

Down the rabbit hole with WorryFree, as sung by the Crystal Gems

Leave a comment
Detroit, in Sorry to Bother You, wearing a pair of earrings that say "MURDER MURDER MURDER" and "KILL KILL KILL"
Detroit, in Sorry to Bother You, wearing a pair of earrings that say “MURDER MURDER MURDER” and “KILL KILL KILL”

CW: cartoon violence, graphic imagery, #metoo, Pulse massacre, Copious Steven Universe spoilers, copious Sorry to Bother You spoilers, copious interest stanning for Boots Riley, functioning labels, passing as neurotypical, whiteness, cishetness

“Look at this place, look at your faces.
They’re shining like a thousand shining stars
Isn’t it nice to find yourself somewhere different,
Why don’t you let yourself just be wherever you are.
Why don’t you let yourself just be somewhere different.
Why don’t you let yourself just be wherever you are.”

“Be Wherever You Are” — Steven Universe (SU)

Allow me, oh Rose muse, to quote freely and under the doctrine of fair use, from The Crystal Gems and Sir Boots of Riley and The Coup of Oakland Fuck Yeah.

I’ve had two different coming out processes around being Autistic.

In the same year.

I’d been struggling to find a way to disclose as Autistic for a while. Getting close to finding support materials, then delaying it. Starting to come out, getting scared off (or talked out of it by some allistic friend). Trying again, melting down, waiting. It took two years of sustained burnout, very detailed visual thinking (note to self: don’t read graphic #metoo depictions, don’t read any accounts of the Pulse massacre either), sensory overload and hyperfocusing to decide to take matters into my own hands. Which I did: I took the tests, read the DSM autism criteria, watched videos from Autistic YouTubers, found basic support materials for autistic women, put it all together, done.

I started telling friends online, and discussing things with other Autistic people. Nobody objected, everybody was supportive. Which was a huge relief! “I’m Autistic! Yay.”

I also had a lingering doubt that there was more to this for me than what I kept reading about in the books I picked up, all of which were geared toward Aspies, because that’s what I could find in terms of Autistic 101 self-help books. Once I got past the diagnostic criteria (which was a fit), much of what was being presented as “life solutions” seemed too “shiny“, white, frequently cishet, and written for someone who is closer to “almost neurotypical” (or who views themselves as such). A notable exception to this: Cynthia Kim’s excellent “I Think I Might Be Autistic“, which I found to be much more accessable, informative and not overwhelming in tone or scope.

Further, I deliberately rejected being part of mainstream society as much as possible in my teens (both by choice and out of survival), and shifted my focused to activism, the arts and spirituality. (I also worked full time in the computer industry for years, which felt like living a “dual life”, and frequently resulted in my being notebook-throwing level miserable. I left that behind in 2001.) In terms of useful life wisdom, these books weren’t providing me with much. I was more interested in making informed decisions about if I should try to integrate into society as an Autistic person from a more well-informed place — or more likely, have better tools to inform people with in the creative and activist circles I’ve been part of most my life — but I tried to keep an open mind. “Can’t I just live in a van?”

“All I want to do is see you turn into a giant woman.” – SU

“This is where we get our grub on!” – Sorry to Bother You (STBY)

“Use your white voice.” – STBY

As I said earlier, while I fit the criteria for autism (readily) and “passed” all the self-assessment tests, I didn’t really fit the “Aspie” social profile, at least as it gets typically presented, either. I’ve also been part of crip liberation movement work, and there’s overlap between the disability community and the trans and intersexed communities I’m a part of. I’m also an anarchist and communist. The idea of looking at “Autistic success” in terms of work and monogamy is discomforting, if not offensive.

Nevertheless, my lack of finding a place that fit made me nervous. If I’m not “high functioning”, and I’m not in need of extensive daily support, then who am I? The best solution I could find to “work doesn’t work for me” is “start a business”, which doesn’t work for me either; even if I wanted to do that, I’d need to spend money to handle things that I don’t have the ability to juggle, or become a boss. Allow me to quote from the IWW Preamble here: “The working class and the employing class have nothing in common. There can be no peace so long as hunger and want are found among millions of the working people and the few, who make up the employing class, have all the good things of life.”

It started to sink in that I was a lot more autistic than I had presumed at first. I figured out that I mapped to “low functioning” every bit as much as “high”. Possibly more.

The last “high functioning” book I read was full of dire predictions about the risks of being unassessed later in life, and rather unpleasant (and paradoxical) attempts to unmask whoever was reading it as well. The cognitive dissonance of it was too much to bear, and I started to come unglued.

I am very good at patching my head together on my own. (I’ve got lots of practice.) Life throws something at me, I learn from the experience and adapt. When “something” is more like seeing movies in your head for a month because you read some horrible story, or a series of them, or something affecting you so deeply that it feels like your skull is being split open — that’s OK. I’d learned to take this sort of thing in stride. Pulls out industrial grade self-care kit, gets to work.

So, I know how to fix things, even if i’m the thing being fixed, and I’m the one doing it. Yay! Problem solved, right?

No. I was a mess.

Cassius Green squares off with Steve Lift in Sorry to Bother You
Cassius Green squares off with Steve Lift in Sorry to Bother You

“This is when I started to panic. A little bit.” – me, mimicking Garnet

“Sit. Down.” – STBY

I was in freefall. I pieced my head together well enough, but everything was setting me on edge. It was as if I was living in an meltdown tunnel.

I started reviewing my past in more depth, my childhood in particular. My childhood had no filter. I stacked rocks. I stared at shiny things. I’d read the encyclopedia, or go through the same book for hours. I’d stim in whatever way I’d please, or get stopped from doing so. While a lot of things were rather intense (I remember throwing up in the green stamp store as a toddler because everything was way too green), the most overwhelming thing in my environment were authority figures and other kids. I’d run into closets at the school, chase my crush’s boyfriend when my neurology spiked, reinvent the rules of a game on the fly while we were playing it together, fight back. When I got sufficient support from teachers (which did happen twice), I’d focus on school work, and start to relax. In those cases, the teacher served as a sort of stand-in for friends. The moment I’d move to the next grade, the support was gone, and everything would fall apart again. I decided to bail on society when I was 14, left high school when I was 16, and save for a few rather miserable years where I half-assedly and very angrily tried to assimilate in my 30s, that’s where I’ve lived since. This is not an “Aspie success story”. I’m not even sure it’s an Aspie failure story. The “fitting in, eventually, but still being sort of quirky” narrative wasn’t me. (I also think that narrative is assmiliationist, but it seems like some people are able to sustain that better than I can — frequently at a cost.) I’m not sure that I’m that different from when I was younger, I’m just an older, more experienced, less traumatized version of myself.

Eventually, I started finding more cogent answers on the basis of lived experience, not just diagnostic criteria. I pieced together that “Asperger’s” no longer exists, “functioning labels” are flawed and offensive, and that there’s community to be found across the entire spectrum — but that it’s less likely to be found in a book from a mainstreaming-focused publisher. I was wounded, but I was magical as well.

“You might not believe it
You might not believe it
But you got a lot in common, you really do
You both love me and I love both of you”

“You Both Love Me And I Love Both Of You“- SU

“We are all part of one spectrum.” – Amy Sequenzia

What saved me was reading people who have a strong self-advocacy narrative around being disabled. I can’t integrate into society, I’ve tried. Perhaps in the future, I will, but I’m not going to risk setting myself up for more failure. It looks way too much like “I didn’t even know that you’re autistic!”, which is both offensive and not who I am. People know that I’m different well enough to comment on it, resist it, give me grief over it all my life. I don’t hold any resentment over that (now, at least), but I get the message. It hurts to say that I’m “too weird” for even “weird subcultural spaces”, let alone mainstream ones, but I am in a lot of cases. I discovered support materials that were more of a fit – “Loud Hands“, “All The Weight of Our Dreams“, autistic bloggers who write about being Autistic as a disability (including bloggers with multiple disabilities), all from a self-advocacy and crip liberation perspective.

I also started to realize – admit to myself, really – that I’m not always capable of speech. Definitely not fluent speech. When I started writing this, I was coming off of two days where I could barely speak. This is probably tied to burnout in part, but I’ve always preferred not speaking. When I speak, I’m not speaking as much as translating (writing is the same way for me, it’s just easier), and unless I’m scripting, I’ll have to pause at times (or go mute for a bit) to “catch up”. When I am speaking, I do love to talk about interests with friends that I trust, one-on-one.

Having challenges speaking was the last piece in the puzzle (cue Autism $peaks détournement) — accepting this was what allow me to feel whole again. I let go of “Autistic as in different” and grew into “Autistic as in disabled”. This also maps to a growing body of information that women and non-binary people (and I’m presuming, trans people as well) have “more pronounced symptoms”, or as I prefer to look at it, “That’s right, we’re even more fucking awesome, even as many of us have more challenges living in a society that was never designed for us in the first place“. I gave myself permission to say goodbye to the high-functioning (?) person I thought/hoped that I might be, but that also left me with a strong “wait…oh, shit, this is deeper than I thought” feeling when I considered that as a possibility, so I could be who I really am, without reservations.

“It’s over, isn’t it? Isn’t it?
Isn’t it over?
It’s over isn’t it? Isn’t it?
Isn’t it over?
You won and she chose you
And she loved you and she’s gone
It’s over, isn’t it?
Why can’t I move on?
It’s over, isn’t it?
Why can’t I move on?”

“It’s over isn’t it” – SU

“A cop lives inside of all our heads
We’re gonna kill him dead, we’re gonna finish what we started
A boss lives inside of all our heads
We’re gonna kill him dead, we’re gonna finish what we started”

“Finish What We Started“- Anti-flag

“This is Cassius Green. Sorry to bother you,” – STBY

So…what’s next?

Running after some “You’re almost neurotypical but not quite, back to work” unachievable goal that recedes off into the horizon endlessly (until it all falls apart and I’m left exhausted and unfiltered), will simply never work for me. In a lot of ways, being someone who integrates into the frequently ableist (and racist, and sexist, and…) activist spaces I was part of doesn’t really work, either.

If the theme of my childhood was being who I truly am without reservations (and paying the price for that), this is the recapitulation.

Sing it loud and proud: I’m a disabled, brown, gendervague, neuroqueer Autie.

I wanna know you, know I know you know me
I want a fire that can extinguish the sea
I wanna crush my loneliness into dust
Please ride with me until this whole thing busts

Anitra’s Basement Tapes – The Coup

Here’s to the new life, friends. Forward.

Autistic community, Autistic People of Color, Autistic Women, Liberation, Passing/Masking, Uncategorized, Violence against us

take the mask off

Leave a comment

cw: twitter, discourse, criticism, assault, violence, murder

i deleted my twitter account a while back, but i lurked the web page for this campaign. twitter gives me hives. too much competition for attention, too many people, too aggressively interactive, too overwhelming. arrgh, arrgh, arrgh, arrgh. say it, Deanna.

A picture of Deanna Troi (Star Trek: The Next Generation) having an empathic meltdown.
A picture of Deanna Troi (Star Trek: The Next Generation) having an empathic meltdown.

so there’s that. here’s a post about the start of the campaign.

i liked #takethemaskoff‘s focus on neurodiversity, and education about the harmful effects of masking.

i’m still figuring this out, so i could be wrong here on this point, but one of the things i was seeing seemed like the flip side of saying “being on the spectrum isn’t a disability”; people who have become so good at masking that they’re experiencing personal trauma because of years or decades of being masked all the time. which is a recipe for social burnout, and eventually, autistic burnout.

in my opinion, one of the more positive aspects of things like “take off the mask” is that people who fit more within the “white aspie” social paradigm are starting to open up more about being – oh the ever lasting shocking horror – disabled. that’s where our real collective power is as a community, because it’s the truth. that part of the campaign was important, it just got framed in a “coming out day” sort of way that doesn’t really work, and is sort of offensive.

having Asperger’s be the framework for inclusion and acceptance (when that was possible, which definitely wasn’t, and isn’t, common, because of discrimination against us, no matter where we are on the spectrum) meant that it emphasized “high functioning” as a social paradigm. which is a very shaky foundation, because it’s not representative of anything, and because it can cover up that people are masking to “fit in”, and at a high personal cost. as an autistic person, i’m disabled, and i don’t fit in. i definitely don’t fit into tech culture (or office culture in general), i fare better in subcultures, but that’s because those spaces have a wider tolerance range for being “weird”, while still being ableist, sexist, racist, frequently classist as well. i have more in common with people who have difficulties fitting into society, who have long-term support needs, than someone like Temple Grandin or John Elder Robinson. (also, they didn’t “fit in”, either. they just become famous and successful. shrugs.)

unmasking as an individually practiced political strategy has its problems though.

i worry that this’ll come off as too critical, but here goes. i’ll all for people taking the risk to stim in public if they feel they can risk it — but as a trend? for everybody? absolutely not. i’m not sure that’s a guaranteed safe zone for any of us — in fact, i’m sure it’s not — but it’s definitely not that if you’re autistic and black. i think if you’ve been conditioned to suppress who you are — which a lot of us have — there’s a reclaiming process that is healthy, but starting an ad-hoc civil disobedience campaign around unmasking that prioritizes white autistics isn’t the same thing. it’s not safe to be encouraging this in this particular way for any of us, frankly, and the more at-risk someone is, the less viable (and more potentially harmful) it becomes. framing things in such a way that people are encouraged to choose between being closeted or risking getting shot, and in turn, stimming publicly or otherwise being visibly Autistic, with no plan, no precautions and no risk assessments, is not a good idea. good intentions don’t matter if someone else winds up dead from stimming in public. it’s the equivalent of street protests where nobody masks up and everybody is white, when it’s known that the cops are likely to go wild on people.

for the record, my brown, trans, autistic ass is terrified at the prospect of being pulled over by the cops, and your autistic ass (no matter what race you are) should be as well. i may – or may not – be at less risk of getting shot, but that’s not much of a consolation, when the second and third place prizes are being beaten or arrested. also, idgaf, but that’s definitely not much of a consolation at all. if anything, i’m not sure i trust that part of myself, depending on the situation. (i *really* do not like cops, for starters.)

that all said, being the fool that i am, when take off the mask started, i came up with a plan, and carefully tried out unmasking (as in, visibly stimming) in public.

speaking only for myself, here are my conclusions:

  • i was constantly afraid of getting stopped or harassed, including on side streets;
  • while it’s a nice feeling to stim in public, it’s also the sort of nice feeling that has a mind of its own, because i’m stimming. it’s not like i can necessarily say “i’ll just spin my hand on the side that’s not facing the street and hope for the best”, it depends on if i can suppress or “tone down” one hand while spinning the other (if i’m stimming with both hands). also, i encountered a few situations where my strong impulse was to start flapping my hands and arms as well, which ups the risk factor;
  • i already look somewhat “weird”, stand out for a number of reasons and already do visible things to be able to survive sensory overload, which is its own risk. i can mask that, but it messes me up. shrugs.
  • in terms of empowerment, i’m gaining a lot more from things that have nothing to do with being in public anyway, like sensory diet. i definitely don’t want to wind up punching a cop because my neurology spikes, i can’t suppress it in time, and a flailing arm results in me being critically injured or dead;
  • not all white people™ on the campaign were like this, but there were white people who said things along the lines of “i’m autistic and i’m in public! selfie time!” posts photo of themselves in public. i thought to myself “this is not gonna end well if this keeps up” because where else is left for that sort of thing to go, other than stimming in public in the most foolish way possible while white and having someone bail them out of jail, at best, or saying “woo hoo, coast is clear, i stemmed in public and everything was great!” on twitter. so then, even more foolish white people do even more foolish things, and it becomes like the time when fidget spinners were a craze, but with unfortunate outcomes, like injury or death.

conclusion: wtf? i’m not sure what the goal was here for this part of the campaign, other than “be visibly autistic”. a huge part of the problem is that we can’t do that, without risking being harassed or worse, and the more at-risk someone is (like if they’re black or brown), the greater the potential for being harmed. it’s like being visibly lesbian, gay or trans, in the most queer way possible. depending on where you live and how you’re read, it can either be a positive way of increasing visibility and acceptance, or a way for things to go completely wrong. knowing the difference is where shared community knowledge comes in, and that appears to not have been considered in this case.

i hope it is clear that my concern here is that more of us don’t wind up injured, imprisoned or dead, rather than being against us ending masking when it’s more harmful than helpful. there’s a difference though between rejecting forms of masking that do nothing but harm, and deciding to mask out of personal safety or sometimes, as a form of compensating in order to meet personal needs or goals. figuring out those differences and what they mean for us is part of community dialogue and growing together, in the hopes of creating spaces where we can safely live and express ourselves, in any number of ways. that’s going to take more work than a single campaign, and needs to be accomplished with safety for all people on the spectrum in mind.

ABA, Autistic community, Interests, Liberation, Long Reads, Parents, Self-advocacy, Sensory Integration, Stimming, Teenage Liberation, Violence against us

Alternatives to ABA and behavioralism

Leave a comment

This is a first draft. (Yes, I’m trying to set something off here.) I’m especially looking for feedback from Autistics, especially ones who went through ABA or ABA-like programs in the school system. (I’m in my 50s. I went through a whole bunch of behavioralist, ABA-like experiences, including assessment, but this was before inclusion of autistic children was mandated as part of the U.S. school system’s requirements.) “Play nice”, don’t flame me or others, but please feel free to leave comments and feedback.

For Autistic students:

— You have a right to play alone.

— You have a right to your interests.

— You have a right to say “no”, and be taken seriously.

— You have a right to your stims.

— You have a right to not make eye contact.

— You have a right to move your body.

— You have right to sit where you want, and that’s yours.

— You have a right to learn.

— You have a right not to learn.

— You have a right to make mistakes.

— You have a right not to trust people.

— You have a right to interact with who you want.

— You have a right to make friends of your own choosing.

— You have a right to respect.

— You have a right to self-determination.

— You have a right to self-advocacy.

— If nobody understands what you’re asking for, find a way to tell them. (This may take some time.)

— If doing something hurts, try to find something that doesn’t hurt that works just as well. (It’s ok if you can’t.)

— If you make a mistake and people get mad, ask why in whatever way is safe, if possible. (It’s ok to make your own decisions.)

— People say and do things for reasons other than you might think. Observe, learn, and if possible, ask. (You have a right to not respond.)

For parents:

— Embrace the child who is front of you, not the one that you hoped for.

— Reject ABA, both at a therapist’s office or center, and at home. Being assessed and aggressed upon by teachers messed me up, but not as half as much as having compliance forced on me at home did.  (This was before ABA was formalized as school-age “intervention” under IDEA, otherwise they probably would’ve subjected me to that as well, and fucked me up even more.)

— Advocate for your child. Parent and teacher-led advocacy is one of the things that helped me break free – not from autism, but from people who kept trying to “fix” me. Presume competence.

— If your child has affirming teachers who they have rapport with – let your child know that you support those teachers, and that you disapprove of the ones that deny your child’s humanity.

— Interests aren’t talents or career paths, necessarily. They’re interests, which is enough on its own. (If they wind up being career paths or long-term pursuits, that’s fine too.)

— Never demand quiet hands. (This is part of what messed me up.) Suppressing stims, echolalia and interests is abusive. If you need a time out for yourself, take it.

— Aggressive behavior is happening for a reason. Center your child’s needs, not their behaviors.

— Read the section for teachers below; it’s relevant to parenting as well.

For teachers:

— Dump ABA, including the “good” ABA. ABA is conversion therapy for autistics. Torturing children for being trans or gay isn’t acceptable, torturing us for being autistic shouldn’t be, either.

— Allow students to find their own interests.

— Don’t suppress student’s stims.

— Explosive behavior (hitting, kicking) is communication and self-regulation. Find out what is being said.

— If students want to play alone, let them.

— Ask students about their interests, *gently*.

— Create a welcoming environment, full of things to explore and learn about.

— Create an environment that’s focused on learning.

— What you might think is important isn’t necessarily the same as what your students think is important.

— Don’t force gender expression. Let students express themselves in ways that work for them.

— If a student is swinging their arms, and not seriously injuring themselves: take a step back.

— No restraints! Restraints are violence.

— Every Autistic student is different.

— Every Autistic student is valid.

Autistic community, Autistic People of Color, Passing/Masking, Police, Self-advocacy, Violence against us

Scripting and non-compliance

Leave a comment

Scripting = making your way through a conversation based on memorized interactions.

This doesn’t include talking (or not talking) about interests, that’s its own dynamic.

It’s ok to not script because:

  • It’s painful
  • It’s exhausting
  • It’s overwhelming

That is hopefully a given, but also: it’s ok not to script because you don’t like doing it.

There’s a lot of social skills training materials around, including for autistic adults. scripting is a common topic. “How to do interviews.” “How to go on a date.” “How to keep a job.” What seems to get left out, especially in context, is that it’s ok *not* to script as well. Non-compliance is a social skill! It may not always be desirable, or even safely possible, but knowing how to not comply is a *critical skill*, every bit as much as scripting.

This has parallels to the community-based conversations around masking.

Sometimes, scripting (if possible) is necessary to avoid getting harassed, arrested or worse, but that’s not necessarily the same as doing it because it’s getting you something you want or need, past “surviving the moment”. Which is clearly important, and necessary (especially if you’re a potential target for harassment, abuse or violence, including from the police), but that’s only one facet of life (an important one). That’s a whole other conversation, though.

Scripting is usually somewhere between “massively boring” and “exhausting, sometimes painful” for me. My unmasked state of conversing is slow and with my eyes closed, or not speaking. Some sort of social make-believe conversation as part of a social transaction isn’t where I live, it’s a courtesy and an actual waste of my time and energy in most cases. It’s what I do to eat and pay the bills, as needed. Automation is a pretty strong curb cut for me.

It’s taken a while for me to be proud of bolting from shitty conversations, but i’m getting there. That’s non-compliance, too, and should be celebrated. Do I do my best if a cop stops me? Definitely, but that’s not fun, either. I don’t want someone to teach me how to “pass for the nice officer”, especially on compliance (rather than survival) terms. Work isn’t really any different, save for getting paid. ✊🏽