Category Archives: Autistic Women

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.

“Where have you been experienced?”

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

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

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

Details and bloggy blog things:

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

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

Functioning Labels, Again

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

masking: an emergent lexicon

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.

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.

Community Organizing Beyond “Officially Diagnosed”

There needs to be a “misdiagnosed, undiagnosed and suppressed diagnosis” caucus of sorts. This is important at face value, but also because it dovetails into:

– Under-representation of women and trans people

– Under-representation of people of color

– Under-representation of working class and working poor people (because of cost + misdiagnosis)

– Under-representation (and contested representation) of adult autistics in general

This also impacts on the quality of (beneficial) research, as well as the tendency for research to focus on “cures” rather than social accommodation and support across the spectrum.

The lack of beneficial research + scare tactics = the dominant paradigm around autism, especially in the U.S. and parts of Europe (but not the UK, it seems). (Don’t @ me about Brexit, I know.)

This also requires having an org(s) or movement(s) to have a caucus in to begin with, though. There’s community-based orgs — https://www.aane.org/ comes to mind — but they’re few in number.

ASAN is focused on policy and lobbying, AWNBN is focused on support and resources. All of which are incredibly important, but there needs to be more.

As per usual, the “autism advocacy” groups are actively hostile to self-advocates in a lot of cases. There’s people working to rectify that – but they’re few (if not singular) in number.

Meanwhile, “zomg the vaccines!!!” seems to have gotten supplanted with “zomg, school shooters!!!!” and “zomg, neurodiversity is a cult!!!” <- actual things that actual people say, loudly and repeatedly

Our neurodivergent selves are right here. Feel free to talk with us anytime. Meanwhile, there’s a lot of work to do, and this should be part of it, I think. 💪🏽 ✊🏽 ❤️ Onward.

Quick update

I’ve been slow on posting for the past month because reasons, but here’s some things that I’m working on:

– Origins of ABA and its relation to LGBT conversion therapy

– The realities of being autistic in the U.S. school system

– The lack of diagnosis and subsequent public awareness of autistic women and people of color

– Shared realities and differences between the HSP and Autistic communities

– Lived experiences and realities of undiagnosed and diagnosis-suppressed autistics

There’s a bunch of content up there already, though. Feel free to have a look. 🙂 Thanks!