Category Archives: Liberation

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!

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

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

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

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

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

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

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

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

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

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

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

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

And she was (speaking)

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.

take the mask off

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.

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.

Erasure

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.

Neurodiversity lite, or assimilationist plus?

CW: use of functioning labels to “call in” exclusions of less visible forms of functioning hierarchies, patronizing mainstream media “autism think pieces”

https://rewire.news/article/2018/02/09/siri-love-problem-neurodiversity-lite/

https://www.tumblr.com/sherlocksflataffect/121295972384/psa-from-the-actual-coiner-of-neurodivergent

http://highlysensitiveperson.net/hsp-autism-aspergers/

Preface: I am *NOT* advocating for anti-neurodiversity here! I am proud to be part of the neurodiversity movement. If you are against us, have a seat.

I’m starting to wonder if the late 1990s was not just a step forward in terms of self-advocacy, but also a partial setback, despite best intentions. There’s a way of looking at neurodiversity that emerged as being “differently abled”, which is not everybody on the spectrum’s experience. Some of us *are* disabled. It’s like people are missing the “crip liberation” component of self-advocacy. It’s also true that the press has been very condescending and dismissive (even when being disparagingly pro-neurodiversity ), some of which has spilled over into our familial relations. In contrast, I had a close friend tell me that I was “sensitive” somewhere back in the 90s, and referenced HSP as “something that’s a thing now”. It was basically the opposite of what Astrid’s dad did – asserting something as being good, while also not factoring in autistic traits and life experiences. It was an honest mistake, and I don’t blame her for trying to help, but it probably delayed me seeking a diagnosis.

It can also mean that only the most “shiny”, “maps to high functioning”, “personality typed” of us get a seat…well, not at the table as much as under it, but still. Saying “neurodiversity means that we just have different kinds of brains than NTs” can erase how some us have other disabilities, how many of us have co-morbidities, and not all of us are autistic to the same level or degree, including within the same day! That’s definitely not always the intent, but it can have that sort of “impact”, so to speak.

“You’re not including the *real* people with autism!” is the one trump card autism parents, curebies and aspie supremacists have, and they twist that into whatever toxic balloon animal suits their needs on a regular basis, because they have nothing else to base their shitty assertions on – other than “I <3 torture, gaslighting, and copping a patronizing attitude”. This is something we need to be critiquing in our own community, rather than leaving to adversaries. People who get labeled as “low-functioning” *do* get ignored or otherwise not included in community-based needs assessments on a regular basis, as Julia Bascom and Amy Sequenzia have pointed out. From what I can gather as a relative newcomer to the Autistic community, it’s not that people are willfully ignorant, indifferent or ill-intentioned (although that happens too), as much as not always working in consort and solidarity across the spectrum, as autistic liberationists.

I remember all too well what it felt like to be a terrified 10 year old, watching adults trying to decide if I was “enough of a problem” to escalate their attempts to assess and “convert” me (both cisnormatively and neurotypically). Thankfully, that passed (although the aggressing against me, including in physically violent ways, did not). I’ve never been fully accepted in society, even in marginalized spaces. I see similar things happening in the more relatively privileged corners of the neurodiversity movement as well, my gratitude and indebtedness to some of those corners notwithstanding.

I’ve been in activist spaces enough to know how this can wind up. It sounds…familiar. It’s assimilationist, harms the most oppressed members of our community directly, and eventually harms all of us as well. It needs to be replaced with liberation-focused approaches that include all of us. Not just “Nothing about us, without us” — although definitely that as well! — but “All of us or none of us!”, too.

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.

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