Category Archives: Stimming

“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. ✊🏽

Alternatives to ABA and behavioralism

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.

sensory diet and musicianship

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.

Being “inappropriate”

I am inappropriate on a regular basis, I have been since childhood. Doing this without accidentally pissing people off, or even hurting people at times, takes work. I’ve learned how to work with this so everybody gets their needs met (or stepping away from situations, if that’s the best option available), and not always by masking, either. If anything, I tend to mask among non-autistic friends — masking is a way of saying “I trust you enough to shift gears for your benefit, not mine, and to do emotional labor to be able to talk with you”. If i don’t trust people, I’m definitely not masked. More like *starts yelling* or *goes mute*. It’s sort of like being in a room full of grad students and professors in mathematics, and they keep assuming that because you can write equations on a board, and got a C in Algebra I, that you’re “social peers”, when in fact: you’re lost (or in a format that gets used on the internet sometimes: lost???????????).

My guess is that for non-autistics, the social imperative is so strong/assumed/acculturated, that they just flow right past checking in with the autistic person, and assume “Well, you’re speaking (even if you can’t always speak), so therefore, you’re not *really* autistic. Therefore: what is wrong with you.” Or they just assume you’re neurotypical (NT) without thinking about it. Either way, they’re a blamey bunch of non-autistics.

I’m good at being inappropriate! I do script on a regular basis, though, especially for basic tasks — that can be exhausting as well, so I’m working on eliminating it via curb cuts, or dropping it altogether if possible. I grew up in some sort of early 1970s assessed (both neurologically and queer/transly, from the looks of things) suburban subaltern, and quickly learned that I needed to adapt and find what now are called “curb cuts” if i was going to survive and/or not wind up institutionalized.

Here’s some things I’ve learned that I’d like to share, in case they might help.

BASELINE:

This is important, and gets missed in some of the online conversations about “inappropriate behavior”: it’s ok to prioritize your needs. Read that again. Seriously, it’s OK — if it seems like nobody believes in you, I do. “But I did a horrible thing!” And? Capitalism both teaches, and forces, people to do horrible things. This doesn’t mean do whatever you want, though! More like “feed yourself first, so you can feed others later”.  If the situation is more serious, that’s where transformative justice and harm reduction (if needed) come into play.

PRACTICE:

First and foremost! If you’re confused by something — if it’s safe to ask, do it!

If it’s not safe to ask, make a note of what happened to research later, and get yourself out of the situation. Apologize, if you can.

If someone asks you to stop, stop. If you can’t stop, do your best to walk away, or otherwise end the conversation.

Again, don’t beat yourself up if you made a mistake! We learn from situations, not from abstractions. (You also have a right to be who you are if you don’t know how to learn, or refuse to learn. It may make things more complicated when you deal with other people, though. I’ve found this book to be very helpful, if you’re so inclined.

ACTION:

Stim! This includes aggressive stimming/sensory seeking. It’s possible to redirect self-injurious or “explosive” stimming into aggressive stimming, and with some practice, physically safer forms of one’s sensory diet. Loud, aggressive music works *really* well for me. I flail and stim dance until I’m regulated. I still pace a lot, but I’ve learned to pace and yell when it’s just me, rather than doing so at other people, and not only as my only out until the “pop bottle” explodes. A gentle nudge in a different direction can make all the difference. “But aren’t stims automatic?” Neurologically, probably — but that doesn’t mean you’re devoid of agency, either.

I’ve also regulated my senses visually, both from still images and from film/video. For some reason, really high-contrast, and at times, violent images work for me, especially if it’s so over-the-top that the “sensitive” part of my brain is like “Ha, good one! Human existence is suffering, liberate your desires! Good pun.” (What I can’t handle: realistic or hyper-realistic depictions of violence. I used to watch The Walking Dead, and after a while, it was pretty barftastic to keep up with. I am not fond of being eaten by zombies in white cop-led Hobbesian social horror scenarios that serve as a metaphor for the extended nuclear family under extreme duress. (The same can be said for The Governor or Negan.) Ridiculous, high-contrast, cartoon-like violence? Workable and very useful, in limited doses.

TW: suicide, institutionalization, gaslighting, alt-right, MRAs, abuse

Learn new ways! Look, the rules can be very confusing. Believe me, I know, and it’s fucking ableist how people demand that we understand things “spontaneously”. But it’s possible to learn from the research of other people like us. It’s also possible to get the wrong advice from people with ill intent, and wind up harming someone as a result. So be careful, but thrice-greatest Hermes: don’t beat yourself up! A lot of us (myself included) tend to do that way too much anyway. Research, explore, learn *in whatever way works best for you*. It doesn’t have to be via words or visuals. Learn how you learn, be how you be.

Stimming and the Arts

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

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

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

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

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

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

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

Anger!

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

All the repressed pure anger leaked out of me.

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

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

What I’m talking about is more like this:

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

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

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

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

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

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

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

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

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

More infos:

Anatomy of a Meltdown

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

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

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

An Autistic Burnout