Category Archives: Autism

Communication, intermittently non-speaking, Liberation, non-speaking (at times), visual thinking

And she was (speaking)

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A short while back, I lost all or nearly all of my speaking ability for two weeks, and it’s starting to come back to my usual range of intermittent speaking ability. It’s closer to what it’s like when it comes and goes throughout the day now, but also, I’m learning how to approach it from a place of more informed awareness. No more relying on “Well, I guess I’m pretending to be circumspect today”, or at least, I’m learning how to integrate that with other approaches.

A few days ago, I had full voice for a minute when I woke up.

My sense was to push on it, and see how far I could get, so I did.

All in all, it was about 20 words before it cut out again. It was full for about five words, then grew fainter, then started to (…) pause, then I started saying “word things” (words that aren’t what I’m trying to say). It was close to what I meant, but not there. Like saying “let’s see what done” instead of let’s see what this does”. After that, it went faint, and dropped out again.

My assumption over the past couple of the weeks has been not so much that this is new (I’ve been in situations where people expected me to speak and I couldn’t since grade school), but that it’s unusual to lose my voice, save for intermittent speaking ability. Not new, but not common, either.

The problem with this is that I’ve never measured my speaking ability on a daily basis. If I I was alone (including alone at my desk at work), and I got that “oops, can’t say words” feeling, I just wouldn’t speak. If someone tried to speak with me when I couldn’t say anything back, I’d just fake my way through it (says nothing, shrugs, smiles), or would grab whatever words I could, then if possible, throw the conversation back to them before my voice cut out again. Which is ok and all, but it’s definitely a form of masking, and is every bit as exhausting as all the other ways of doing that.

Yesterday, I went through these poems that I don’t have memorized, and was getting nowhere. So then, I started finding poems that I had cold at some point over the years. (I also keep my sets somewhat fresh – even older pieces get a read-through every once in a while, or if they’re really old, every few years. It’s in my head, regardless.)

The first one (more recently memorized) came out ok, but that’s one short piece.

Then I moved onto other ones.

It felt like I was turning a flywheel through molasses, but I was able to get it out, one after the other.

Once I did that several times, *then* I could read the unmemorized ones off the page, fairly well.

So then, I tried speaking again.

Nothing.

“Well, fuck it.” I typed “OK” in 72 point Helvetica, and just started at it.

That I could do. “OK.”

Turned my back to it, the ability to say it went away.

At 90 degrees, it’s sort of ok. It seems to scale, too – the closer I get, the more clearly I can pronounce “OK”.

It’s the same for saying “So then, I tried speaking again.”

“Well, holy fuck then, Batman. OK.”

My sense here, based on recent and past experience:

  • I can read things off a page, especially if I’m rehearsed and warmed up.
  • I can recite things if I’ve memorized them.
  • How well I can read something depends on visual and possibly, spatial orientation.

I need to test this out a bit more, but I think part of this is that “verbal” thinking for me is essentially visual – I’m strong enough of a visual thinker that it translates words into 3D space. That’s why the closer I am to looking at something, the more clearly I read it. It’s almost like “mental peripheral vision”. I already knew that it works the other way around – my mind translates text into 3D film-like images.

So when I can’t speak at all (or when I can say things, but they’re not what I’m actually trying to say), my choices are:

  • Memorize virtually everything (which is impossible).
  • Memorize scripts (which i can do, but it’s exhausting).
  • Read off of a page when I’m reading or presenting publicly, and use AAC the rest of the time — or alternately, use AAC as my voice.

I’ve decided on the latter. It’s far less energy consuming, and I can’t keep risking burning out just to say words because non-speech-impaired people prefer them.

Also, I know that masking having limited/non-fluid speech affects my mood fairly extensively. I’m a lot more clear-headed when I don’t have to be constantly translating words into speech.

Which in my case is probably more like “translating visual and/or auditory thinking into ??? (something) into verbal thinking into speech”.

Also, I don’t have a lot of these problems when I type, although that can cut out, too. I’ve experienced “linguistic burnout”; that’s what happens when I can’t write, either. Poetry especially, which is sort of like high-octane linguistic architecture, as opposed to essay writing, which is more compositional.

This is a lot like coming out – you’re the same, yet completely different. It’s challenging and transformative. I like it. 🙂

Conclusions, so far:

  • My losing speech was triggered by exhaustion and stress.
  • It’s not a linear recovery process – things don’t happen across a discrete series of step, more like “semi-random noise as it does what it does”.
  • It’s definitely not non-fluid speech, it’s a form of being intermittently non-speaking. The closest description i’ve found yet of what this is like for me is “non-speaking (at times)“. For contrast, here’s non-fluid speech. I can use some of what she describes in response to having non-fluid speech as a compensation technique, but more commonly for me, it’s a form of camouflage, which is why i’m letting it go as a strategy. (More information about both can be found here.)
  • With effort, I can read with some writings that i’ve memorized. Also, looking at printed words acts as a cue – it’s better than doing so from memory, even if it’s something that’s known by heart, like saying “OK”. That said, speaking from memory is still exhausting, reading from a page is much easier.

This is still in-process for me, but I think I’m getting closer to some conclusive answers. I’m definitely planning on using AAC a lot more!

One other thing: one of the reasons I’m posting all this in detail is that there’s very little in terms of support for non-speaking autistics, of all types.

It’s part of the social hierarchy that has been in place for decades based on functioning labels, which don’t represent the complex realities that many of us live and face.

Here’s Paula Durbin-Westby again:

“We need to change some of the ideas about “high functioning” and “low functioning” Autistics. Not being able to speak is equated with “low functioning”. A constellation of characteristics are said to be true of only “LF” people, such as self-injurious behavior, toileting difficulties, and not being able to speak or having limited speech, while “HF” people are said to have another set of characteristics, also fairly stereotypical, such as being “geniuses” who are good at computer programming and lack empathy. These binary divisions don’t address the wide variety and range of characteristics of Autistic people, and paint a limited picture of individual Autistics, many of whom defy (not necessarily on purpose!) the expectations surrounding their “end” of the autism spectrum.”

More on this (in relation to the divisions that functioning labels cause) can be found in this excellent piece by Amy Sequenzia.

Autvoid, Communication, non-speaking (at times), Passing/Masking, Self-advocacy, Social Cues

“i’ll do anything once”

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when i was younger, there was this habit i got into in my 20s, which gradually waned over time. it’s a variation on “learning social situations” — my rationale was that if i make a mistake, i’ll make it once, then learn from the situation.

the only problem with this thinking is that in a lot of situations, i’m an associative learner, not a crystalized one, and some of the situations i was in cascaded over months or years. there are a potentially infinite number of situations i can find myself in by definition, and that for a variety of reasons, may or may not easy to extricate myself out of. this is further compounded by my being both too trusting and too nice. as a result, i’d get used, get fed up, get out of the bad situation, find another one, then do it all over again. not so much because of thinking “maybe it’ll be different this time” as “hey, look at this entirely different situation, i wonder what that’s about”. eventually, i started kicking myself over it, then i realized that wasn’t working, either – so i just pulled back from socializing, first in terms of intimate relationships, then friendship.

in my late 40s, the way i started to deal with this was to simply avoid people. which is fine and all, but i do actually like interacting with people, i just don’t like having my senses overwhelmed by speaking (or being spoken to), having my visual and auditory thinking being disrupted by verbal rhetoric, and being so overloaded as a result that i couldn’t catch my over-trusting, oversensitive, hyperempathic nature being messed with.

now that i’ve learned better well enough to just not get myself into shitty situations to begin with (of whichever nature), i think there’s a solution for this sort of pattern that goes deeper than the also-important “learn social situations” one.

for me, i need two things in place for this to get better:

– i need to accept and embrace being non-speaking (at times);
– i need to trust my visual, auditory and associative learning processes.

one of the ways i reflexively learn things is by what my senses tell me, and by visual memory. example: if i read something visually descriptive, my mind turns it into a visual representation of the text. (i can also speak text if its written down, even if i’m otherwise non-speaking, sometimes.) where my senses come into play is that my mind will use my sense of recall and visual learning to draw a symbolic map of a potential danger, or need. if i trust both of those things, then i can learn how to avoid situations based on non-verbal communication and thought. otherwise, i’ll start convincing myself that the “word things” (words that i’m thinking or saying, but that don’t match what I’m trying to communicate) i’m saying to myself in order to translate and verbally communicate in the situation are actually real. it’s a form of masking, that thankfully i learned well enough to avoid becoming too invested in, but it’s still a risk for me. this mixed with being too trusting and too nice is a recipe for disaster.

these two things play off of each other. it’s a LOT easier to “parse” my visual thought processes (and my auditory ones) if i don’t have to translate into text. this is where AAC can come in very handy; my mind likes to shut itself my speaking ability temporarily if it can’t keep up with the translation into words and speech. so then, i can’t speak, possibly for a sentence, possibly for hours. if i really get overwhelmed, my speech will stop working altogether for days at a time (or become much more limited). the same thing goes for grammar – i’ve had occasions where everything seemed to be going fine with my creative writing process, then i just stopped altogether and couldn’t do so for years. it’s a type of autistic burnout when things get to that point.

until i finally let go of masking my frequent inability to speak, and embraced myself as a non-speaking (at times) person, I wasn’t able to accept and connect with tools such as AAC. my hope is that using AAC in a fluid way that maps to my neurology means that I can communicate without being overwhelmed – in other words, i’ll use a combination of AAC and speaking to whatever degree is possible in the situation. if something is too difficult to speak or type in the moment, i can write it in advance. if neither of those are possible, i can take my time. if all of that not permitted, that is when I plan to raise holy hell about it, in the finest crip liberation, “no spoons, only knives” direct action sense. hell hath no fury like an infinitely minded woman who has been indefinitely fucked with. onward.

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

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

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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

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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

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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.

ABA, Autvoid, Functioning Labels, Liberation, Parents, Uncategorized, Violence against us

Erasure

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Trigger warning: long read, anger, suicidality, ABA, trauma, functioning labels

This pattern: adaptive skill -> “intelligent” -> high-functioning. wtf.

Further, this pattern: need for support -> “lack” -> low-functioning. Again: wtf.

First off: it’s ableist. That’s a given. Functioning labels, intelligence and correlating adaptability to both (and its respective presumed opposites) are *all* flawed concepts.

That said, I’d like to talk about how this makes no sense. Not just because functioning labels are ableist, but how the entire pattern doesn’t make any sense.

A *lot* of being viewed as high-functioning is about masking, and possibly having some particular set of skills or talents that are viewed as “humanizing” (and under capitalism, valuable). I can do both (even if it’s sending me careening towards a meltdown while I do it), up to a point — then things fall apart. So, rhetorically speaking: what does that make me? It is virtually impossible to memorize every possible social interaction; even if some hypothetical person did so, new ones emerge regularly, if not constantly. No amount of scanning a database of situations and scripted responses, and affective empathy (if needed) can fix that. It’s as if those of us who get viewed as “high functioning” (or in some mixed state of high and low functioning, if someone is bothering to pay attention) are the opposite of the “puzzle piece” metaphor; instead of being a neurotypical person trapped inside an autistic shell, we’re autistic people trapped in a learned/assimilated neurotypical one, to varying degrees.

A huge part of this is due to viewing typed or spoken communication as a key marker of ability and intelligence, if not proof of intelligence itself. When I’m non-speaking, does my ability shift? When I melt down? When I’m non-compliant? Is an IQ test an indicator of anything at all? (If you answer is “yes”, consider: even the official WAIS site encourages people to study in advance for testing. So then, what is being tested? If your answer is speed of response as an indicator of intelligence, perhaps consider that this concept is also flawed and ableist.) Also, the lived experience of having a skill or talent in society is predicated on a complex set of social skills, and it’s rare for accommodations to be made based entirely on that skill or talent, especially if you’re marginalized or oppressed. <sarcasm> So much for talent being mapped to functionality with the inference of social acceptance and inclusion! </sarcasm>

That said, there’s also the problem of viewing “low functioning” as lack rather than difference, of equating challenges and the need for support through the lens of intelligence, if not correlating lack of speech to lack of intelligence to lack of capability. Everything from the rather condescending ways people approach facilitated communication on an individual basis, without allowing for context, training or the person’s ability to type independently, to the ways that exhibiting high-functioning traits is equated with being high functioning at all times (or for that matter, with “not really being autistic”) are rooted in biased assumptions about functionality, both “high” and “low”.

Here’s a deeper problem that I see, especially for autistic youth: either through adversives or positive reinforcement, ABA presumes making an allistic child out of an autistic one. This alone is abuse, but on top of it, there’s a presumption that you’ll ditch that “fake child” (the autistic one) and become the real one (the made-up allistic one) that was buried under a pile of broken puzzle pieces. It’s very abuser-as-false-savior-like, as a “therapeutic” approach.

The problem with this is that it’s a lie. The real child is the autistic one, (TW: ABA, coercion, violence) the rest is forced and/or bribed compliance. Further, if you remember who you actually are in adolescence and adulthood, this creates a tension between your real self and the fake allistic one — which is masking at its most harmful. It can lead to forgetting who you are altogether, so you know that your mask isn’t real, but you can’t get back to who you are before you masked, either. This was coming up a lot on the #takethemaskoff campaign: autistic people kept saying “I’ve been masking for so long, I don’t even know who am anymore.” I know what it feels like to start to forget. It’s like someone is murdering you, and you get to watch. There’s masking out of necessity and survival, as well as masking to get your wants and needs met — then there’s masking that can be overcome, safely, or that could if someone hadn’t been subjected to years of forced compliance. (These categories aren’t necessarily mutually exclusive, either.) In my opinion this is part of why there’s a link between suicidality and masking.

There’s a variety of ways that ABA and directly ABA-like things are foisted upon autistics. I know that ABA as a practice has been around since the mid-1960s, and the first assessment questionnaires have been around since then as well; my parents used behavioralist techniques that map to ABA more than closely enough to parallel ABA itself. Why that is, I don’t know (although I have my guesses), all I know is that it was traumatizing as fuck, and once the “compliance protocol” was established, it *never* went way. Not just in childhood, period. I have had to unlearn “people tell you what to do, you do it”. It’s a life skills anti-pattern.

What helped me find modes of expression and learning in the school system was *NOT* being assessed, and the more negative aspects of what my parents did at home. What did were teachers that encouraged students to find their own ways of learning and communicating, instead of trying to force us into a box. I thrived under these teachers, and didn’t otherwise. (It’s probably important to point out here that I was frequently what now gets labeled as combative, non-compliant or passive otherwise.) By high school, I learned how to coast, until I was forced out for other reasons. This wasn’t just educational, it was inter-personal as well. I was literally rescued from some personal hell, assessment included, twice — only to fall back into hell until I left the school system altogether, and I have no intentions of forgetting that.

Perhaps what is flawed here is both the entire concept of intelligence in the first place, as a presumed indicator of cognition as well as ability, if not sentience — as well as the idea of “functioning” being a fixed state, that can only be deviated from by regression or “cure”. Both of these assumptions are dangerously ableist, if not eugenicist in their world-views. This is the sort of never-ending array of conundrums that Melanie Yergeau talks about — the frequent assumption is that someone is either too autistic or not autistic enough to self-advocate. This basically is a toxic worldview, and deserves to be challenged as a pernicious threat to our well-being and survival. Self-advocacy is communication, and non-compliance is a social skill, regardless of how we have been labeled, how we communicate and express ourselves, and what levels of support we need.

Interests, Sensory Integration, Stimming

sensory diet and musicianship

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no caps for this one, says the inner dgaf editor.

i’m making progress on how the fuck to even compose anything at all because computer.

it’s frustrating that this isn’t talked about more. i started working on this actively in 2011, because i kept wanting to stim every time my hands touched an instrument, loaded a DAW or thought about either.

it took diagnosing myself to even start to get to solutions for that. i’m learning things that are either embedded in the Autistic self-advocacy literature, or that otherwise require working with an occupational therapist.

some things i’ve figured out:

  • i have to stim. a lot. if i’m not stimming, it’s usually a sign that i’m getting overwhelmed and shutting down.
  • i don’t have a single dominant mode of thinking. i’m visual-auditory-kinesthetic-analytical-sort-of-verbal.
  • bright colors help integrate sensory diet into my work. two recent examples are below.
Moog Grandmother
A photo of the Moog Grandmother synthesizer. Source: https://www.pmtonline.co.uk/yoma_press/wp-content/uploads/2018/05/moog-grandmother.jpg
A photograph of the Komplete Kontrol MK2 keyboard controller.
A photograph of the Komplete Kontrol MK2 keyboard controller. https://s3.amazonaws.com/factmag-images/wp-content/uploads/2017/10/komplete-kontrol-mk2-screens.jpg
  • music pulls together multiple interests of mine, and they exist both independently and inter-dependently. i have to honor all of those interests, or things like “i need to buy all the drum machines” or “why do i love this hardware even though it doesn’t work for me as a producer” or “arrgh, i’ll just watch steven universe instead” start happening. this is a daily thing for me. it actively interferes with my ability to work, if i don’t integrate it.
  • there’s also subtle (and obvious) forms of stigma with liking things that have loud colors and note guides, especially among serious and professional musicians and producers. it can get viewed as being amateurish or unprofessional or corny, and i have to watch out for that sort of negative self-talk as well, because i’m undermining myself as a creative worker when i buy into it.

unsurprisingly, this leaves little energy for anything else, if left unchecked. so then, i’m either in sloth mode, starting to melt down more, or really, really bitchy. which affects my ability to interact with other people, neurotypicals and some neurodivergent non-autistics especially.

the “hidden curriculum” for interacting with neurotypicals comes up regularly, but what doesn’t get covered as much is what gets hidden from us, about us. all the more if you’re undiagnosed, or your diagnosis was suppressed. like i said earlier, i had no way to know until i did a lot of digging. it’s frustrating.

i’m relieved to be getting real answers though, even if it’s meant piecing together things on my own (and working to not get upset over the lack of good ‘by us, for us” materials that aren’t neurotypical-centric or patently false). i’m getting there.

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

Scripting and non-compliance

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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. ✊🏽

Autistic community, Autistic People of Color, Autistic Women, Functioning Labels

“Where have you been experienced?”

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I feel like there needs more ways for us to converse, write and talk about what our experiences are, relative to a given moment in time, that definitely is *not* about functioning labels, or otherwise requiring a complex set of descriptive markers. Autistic burnout, shutdowns, meltdowns and masking go a long way towards that, but it still feels like there’s things that aren’t described fully. Here’s a few that I’ve encountered:

– having a “pre-words” connection with another autistic person, either non-verbally or ✨ sparsely verbal/textual ✨
– that feeling of realizing that someone is more socially fluent than you are, but you’re both autistic
– getting stuck in a code-switching loop when someone is unmasked and you’re not
– getting stuck in a code-switching loop with someone who isn’t autistic where you keep trying to mask/script/compensate, and failing at it

I want to be able to tell someone when I’m having a hard time, when I’m doing fine *and* don’t get social cues at times, how I’m a hand flapping, emotionally volatile, ball of all the feels on a daily basis, and that’s just where I’m at — without using a pathologizing sub-label that is largely rejected by our community. Having to say “I don’t necessarily fit to rigid categories in either direction, but if I had to choose, I’m low-functioning leaning more than high-functioning leaning — oh and btw, I’m hyperempathic as fuck, and fairly alexithymic on top of it, so go easy on me, don’t armchair diagnose me as having bipolar disorder or BPD, and oh yeah, functioning labels are bullshit. ✨” is sort of awkward, at the very least.

Details and bloggy blog things:

“What’s wrong with functioning labels?” The problem with functioning labels is that they get into “Master’s Tools”-like territory, but in relation to disability, rather than race.

They also don’t tend to work. If anything, they reinforce NT passing dynamics — “I never would’ve guessed you’re autistic!” or “I’m definitely guessing that you’re depressed, not burned out!”

Functioning Labels, Again

“High functioning” as a form of gatekeeping means that people’s actual ways of being can get obscured, where they tend to be on the spectrum overall can get obscured as well (if someone masks heavily) or result in them being rejected out of some Autistic spaces (if they don’t). It’s residual from when Asperger’s syndrome was a diagnostic category, and still persists in things such as clinical levels within the autistic spectrum, and people using functioning labels period. There’s an “Oh, I pass so well, people think I’m NT” vs. “You don’t pass at all? Well, that explains why you’re weird :laugh track:” dynamic at times that troubles me. Anybody who has known me for more than a few weeks tends to figure out that I’m just good at memorizing scripts and adapting in familiar settings, which isn’t the same as being “high functioning” in relation to NT-driven social dynamics. (More like “fake it until you fail it“.)

Autistic Women, Passing/Masking, Self-advocacy

masking: an emergent lexicon

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masking has many facets. lower caps are good things. here’s some proposed definitions.

– masking: passing as allistic, either as a means to an end, or out of necessity.
– camouflaging: taking on a role to fit in, sometimes to great detail
– passing: presenting as neurotypical. passing as in the closet, but autistically, not necessarily in terms of gender or sexuality.
– compensating: a strategic social exchange with neurotypical people and society. sort of like scripting, but improvisatory as well. See https://link.springer.com/article/10.1007/s10803-017-3166-5.
– mimicry: taking on a new persona to fit in. see https://womanwithaspergers.wordpress.com/2013/02/01/who-are-we-women-autism-and-social-mimicry-part-ii/.

it’s been interesting to watch the “take the mask off” hashtag campaign on twitter evolve over the past several weeks. at first it was a mix of important narratives about how masking and camouflaging can be a health risk, personal accounts and “i’m wearing a spinner ring in public! *selfie*” things. all of which is fine, but it also was very white at some points, in terms of presenting masking as something to aspire to (which i agree with) while not talking about the risks in doing so for autistics of color. that got addressed quickly, thankfully.

i think unmasking (or never being masked, and points in-between), when safely possible, can be a form of liberation. there’s a ton of important lessons to be taken from demasking, both as a form of reclaiming, and as a form of personal direct action. horizontalist vanguards (including explicitly crip liberation-focused ones) ebb and flow all the time under late capitalism, including in individual acts of resistance, both intentionally and not, and this is a very good example of one, with useful emergent theories/strategies/tactics for everybody on the left, not just those of us who are autistic as well. this includes discussions around how masking is seriously (and violently) gatekept for neurodivergent people of color, and at times, white and light-skinned passing autistics as well. for those of us who can create openings in public space for the rest of us to unmask safely, we should be doing so. i also think we need to support people who can’t in their needs, both so they can and simply because supporting those most in need in a given community is a good thing to do.

also, getting my needs met either on my own or in-community helped me to mask less often, or at least, to mask in a softer way than i do with strangers, white cishet neurotypical strangers in particular. including in spaces where i wasn’t out about being neurodivergent, or even “weird” (as much as being “non-weird” is possible for me, which isn’t that much, to say the least). even if people didn’t understand what meltdowns were, or actively disliked the way I came off, or who knows how many arguments i got into — there was an understanding of there being a [sometimes annoying] human being behind my “unacceptable” behavior. having the times where i went mute for days, or paced angrily and ranted about (or at) roommates, or got in a screaming match? that was understood to be our business. the time i was echolalic and speaking in nothing but nth level metaphors, and couldn’t find my way back to “normal words”? “addressed” quietly by a friend until i found my way back to linear sentences. comfy nouns that reference cozy verbs. left foot, right foot, left. i do think much of that was ableist, though. it just wasn’t ableist in a way that inherently denied my humanity to the level that ABA and most of the non-autistic “takes” about us do. it’s not unlike how being mixed can “present”, including in communities of color spaces, as being both inside and outside of community. it’s another kind of borderlands.