Category Archives: Passing/Masking

At the zoo, autistic burnout, intermittently non-speaking, Liberation, non-speaking (at times), Passing/Masking, Self-regulation

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

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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!

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

“i’ll do anything once”

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

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

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

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

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

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

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

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

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

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

take the mask off

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

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

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

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

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

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

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

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

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

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

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

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

speaking only for myself, here are my conclusions:

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

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

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

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

Scripting and non-compliance

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

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

It’s ok to not script because:

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

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

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

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

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

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

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

Autistic Women, Passing/Masking, Self-advocacy

masking: an emergent lexicon

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

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

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

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

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

Autistic Women, Liberation, Passing/Masking, self-care, Stimming

Being “inappropriate”

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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.

Interests, Parents, Passing/Masking, Stimming

Stimming and the Arts

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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.

Autism, Autistic community, Functioning Labels, Labor, Passing/Masking, POC

Shinylander: only the most high functioning shall survive

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wtf, Temple Grandin. *anxiety intensifies*

I don’t buy this assimilationist, anti-worker, anti-poor nonsense. Full stop.

I’ve worked way too many jobs where i was miserable, my coworkers were miserable, the department heads were miserable — and those were the sort of “not just a job, a career” sorts of positions she’s talking about.

It’s not just her, unfortunately. Some corners of the Autistic community, especially among people who tout being high functioning (or being “cured”) as a panacea, have a ways to go in terms of:

– not playing high/low, aspie/autie games, especially “high-functioning” punching down towards “low-functioning”
– active inclusion and acceptance of POC
– active acceptance of people who self-dx
– acceptance of neurodiversity, neurodivergence and neuroqueerness in general

We’re a community, not a horse race. Asserting that we’re not dealing with the same core issues is bunk, even if they manifest to varying levels from person to person, and within a given person.

When people try to draw a hard distinction between auties and aspies, or the employed (and careered, no less) vs. the unemployed, what they are doing is attempting to reify passing, including passing as allistic and/or NT, as well as “I never would’ve guessed that you’re autistic” sorts of mind games. It may work for them to do that, and that’s fine, but insisting that everybody be like them is both cruel and divisive.

Counter-propoganda for your informational needs:

We Are All Part of One Spectrum

Functioning Labels, Again

Decoding the High Functioning Label

ABA, Autism, Clinical things - meh, Conversion Therapy (Is Evil), Mainstream Media, Passing/Masking, Queer/Trans

Queer/Trans Autisinal Intersect: an Autistic Neuroqueer Personifesto

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The thing about the intersect of autism and queer/transness for me is that it’s all a blur, and has been since childhood, on a personal level. It’s *all* part of the same fabric of oppression, teasing it out in terms of what happened diagnostically is murky at best.

In childhood and through to my teens, I was weepy, angry, avoidant, aggressive, bookish, stimmy, social (but with the “wrong” gender), reclusive, and basically a queer happy mess, as long as people left me alone, which they most definitely did not. So then, i was a miserable queer mess, and they still didn’t leave me alone.

Both at school and in my sort-of-home, everything was an intervention, constantly, from the moment I showed up the first day of school to the moment I left the school system when i was 15. Autism, queerness, transness, problem behavior, asocial behavior, all the same tapestry of “stop doing that”.

That said, they did all sorts of soft and hard intervention-like things to me, back when ABA was just starting to get off the ground. “Stop being queer/trans” things. “We’re testing your ability to match faces to emotions” things. Rorschach things. EEG things. “The tests are to screen for your mother’s neurological condition, but only you get tested repeatedly” things. “Look me in the eye, no, *look* me in the eye” things. “Staggering from the EEG drugs” things. “Stop toe walking, people will think you’re gay” things. “Stop looking at shiny and stacked things” things.

I tried to self-advocate to get my school records, but my mom bullied me out of it.

It took me over 40 years to talk about this publicly, and the only reason I am now is because I lucked my way into support materials for autistic women, or as seems to still be an ok thing to say, autistic females. (Yes, females in that sort of way, ladies.)

So I hate to break it to folks, but clinical diagnosis or no clinical diagnosis, school records or no school records, you’re never going to get rid of me.

I am well the damn hell right here, I will remain here until we all are free, and you can’t stop me. To paraphrase Rodrigo De Souza, “My paperwork is in the blood”. (Cancelled? Boo.)