Category Archives: Self-regulation

Wherein I think too much (but not too too much) about (not) speaking

Henceforth and hereto, let it be known that this post, written between last night, then rest, then again at 3:30 AM, on this day of the year of the corn, 2019, shall be referred to as “being back on my bullshit”. Let it be known that I, queen of the internets, may venture into the dark realm of zoo exhibits, in order to gather our tally-hos as a community subgrouping of wretches, each in our own unique ways, as it so befits us, amen.

Enough with the puns, here comes the sex pistols.

Someone mapped out their speech levels, from fluid speech to non-speaking. This is so great and happy-making. I got to thinking: what if all of us who have varying kinds of speaking challenges did this? Here’s mine:

~~~ You have now entered the inharmonic passing realm ~~~

1) Speaking-as-masking. This is limited for me, and burns me out, but it happens. Sometimes, scripting works, but I try to limit it. Also, there’s this point I get to sometimes as I’m starting to enter social burnout where I can speak defensively to try to get someone to shut up, but that doesn’t last for long, usually. If I switch between levels, as described below, sometimes it can get drawn out, which…sighs, that usually makes (masks?) things worse (walrus?). This, along with alternating 2, 3, and 6a, is how I was able to be onsite as a tech writer, even if it meant falling apart when I got home (or on the job). sings We bring more than a paycheck.

2) Info dumping. I can speak fluidly, but about interests. Anything else, not so much. Which is great – if someone wants to listen to me info dump. (Yes, I need more friends with shared interests.)

3) Reading things off a page. I can usually do this, especially if it’s about interests, but also, if I have the energy, in general as well. Same goes for memorizing, although that’s tiring to rehearse, says the time I started to slide into autistic burnout because I was performing out too much.

4) Faking non-fluid speech. This requires some explanation. I’m close to non-speaking at this point, but I can rest on words, or utterances, to fill the gaps between not being able to speak.

Me: “Hunh. (pause) Let me see. (…) (…) (…)”.

Someone: “You ok there?”

Me: “Yes, give -” (…) “OK.” <mirrors “thinking something through”> “Wow, OK!”

Eventually, I can brokenly get the thought out, or sometimes, info dump a few paragraphs all at once.

~~~ Unmasked demarcation line, here be dragons and cephalopods ~~~

5) Blurting, echolalia, exclamations. (Hi, I can’t converse via speech for shit! :D) But also: “Shit!” “Mierda!” “What am I doing?” “uggggghhhhHHHHHHH” “ok, ok, ok, ok, ok.” Ok.

6a) Not speaking, because burned out. You couldn’t pry it out of me. I can type and form sentences, and write, just fine, although grammar may start slipping a bit. Maybe wait a couple of hours, or a couple of days, or a couple of weeks if you need me to talk. ASL is good btw, AAC is quite nice.

6b) Not speaking, because not burned out (or recovering from burning out). I’m happily ping-ponging across all the other levels, including the ones below, while working to be aware that 1-4 can use up all my spoons, then I’ll start burning out — so careful now, autienaut.

7) Not grammatical. Definitely not speaking. I’m still thinking, but ✨ it might ✨ shut off at times, or be more emotional, visual or auditory in nature. This is about as close as I get to being so-called pre-verbal, but wait!

8) “Post-verbal“. Aw, the poor middle-aged puzzle piece! Such fortress, much walls, wow. Earth-2047 Autism $peaks is quite worried about fluid adaptation. “Your parent isn’t like my child!” I’m in my own space, whether or not you decide to join me there, that’s your business. This usually happens if I’m really burned out, but it’s fluid (yes, there’s such a thing as being fluidly non-speaking) in motion between 6-7 as well. Come sit, we won’t walk.

So, there’s my levels. They tend to be somewhat discrete, but they can vary somewhat quickly, and can mix together at times.

The thing that gets me (and makes me sad and angry, tbh) is that people, NTs especially, don’t see how amazing this is – how there’s such a range of variations in human experience, around something that’s assumed to be completely binary in nature. “You either can speak, or you can’t.”

Also, all of our experiences across the speaking continuum, vary so incredibly between each one of us!

Ignoring this is another way that NT society misses out on the depth and range of our lived experiences. It’s both a shame, and their loss.

Another thing I’m (thinkthinging about) in relation to being intermittently non-speaking (or as Paula Durbin-Westby calls it, “non speaking (at times)“) is “what happens when I’m not in social or autistic burnout”? Especially since if I’m not in burnout, I’m still intermittently non-speaking, it’s just not as likely to be ✨ (Nope, not happening) for hours to weeks at a time. There’s been times where I knew that I wasn’t in burnout, such as when I had several days somewhere quiet, and was rested and relaxed — and I mostly couldn’t speak then, either.

Not being able to speak for me is a way of recovering from masking — just as masking in general can lead to burnout, and require a period where our defenses against NT society are stripped bare, so too does “speak-masking” require the same. (Amen.) As well as it being something that I just do. It happens, or doesn’t happen, or whatever.

I do wonder about what speaking would look like on a more regular basis, as letting go of cycles of burnout and recovery become (hopefully) more common, post-self-affirmation. Is it echolalic? That’s pretty well a given, but what if I have echolalic metaphors that point to echolalic speech and thought? I’ve had that happen. “The NTs, they are quite alarmed.”

Would I have my own dialect? Would I make up my own words? (I’m very certain of this. I love neologisms.) Make up my own frigging language? Would I sing things? (That’s probably a given as well — stimming! Interests! Stimming and interests! Yayayay! Joy++++!) Or some mix of AAC, ASL and all of this?

I haven’t *even* gotten into typing/writing, and how that interacts with (not) speaking. What if this entire post is translated into neurotypical rhetoric? (It is, btw. Paging Melanie Yergeau and Julia Miele-Rojas, intracommunity dialogue courtesy telephone.) My assumption is that at least someone who isn’t autistic is going to read this. Maybe. Who knows? Why even translate into NT-speak, though? What if my language was mine, and mine alone, and that’s OK? What if meeting us where we are was the norm, rather than NTs demanding that we do all the work?

So many questions!

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

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

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

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

*record needle scratch*

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

that’s sort of crass, admittedly.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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