a tool is something that you control, either on your own or in conjunction with others, consensually.
a cure (including “cures” that don’t work) is a solution to a problem. it’s goal is to make whatever the presumed problem is – in this case, “autism” – go away. a cure can be chosen, but also, is frequently prescribed, if not forced or coerced.
given that autism isn’t a problem (and more specifically, a disease, injury, or despite the nomenclature, a “disorder”), but a type of neurology (as well as the social context surrounding that neurology), all “cures” for autism are in the “doesn’t work” category. some so-called “cures” may be helpful in relation to our support needs (or in the case of things like ABA, definitely not helpful) as disabled people – but again, that’s a tool, not a cure.
understanding the difference between the two is really important, especially for disabled people, as well as those who provide support for us. consider:
music therapy: both tool and “cure” (although depending on the practictioner, neurological support is probably more appropriate than cure)
occupational therapy (OT): tool, solution/support, “cure” (especially if the OT is focused on “fixing stims”, rather than self-regulation.)
there’s a lot of bad information (and even worse practices) that come down to thinking that things that we do naturally, need to be fixed or “cured”. including in ways that can be trauma-inducing, even fatal.
this gets back to the need for self-advocacy. more specifically, support needs, as well as the ability to make our own choices about what those supports are.
the common denominator though is tools, as opposed to cures.
this is a huge issue for us, and could stand to undergo a fundamental shift in thinking. especially among allistic, ableist professionals who are providing education and support for us, but also, among each other in our community at times.
i’m writing this in the hopes that people won’t have to learn the “terrain” of autistic diagnosis and the Autistic community the hard way, which is mostly what i did (but with a lot of help from the self-advocacy and neurodiversity communities). while i am grateful for the efforts of self-advocates who got me through it all, it wasn’t the best of experiences — so much information! so many conflicts! it can be draining. anyway, here’s the show.
when I self-dx’d, I’d been in counter-cultural movements for decades. “accepting who you are unconditionally” is something i became aware of in my teens, and that i periodically refreshed throughout my life. (i’ve come out of a *lot* of closets.)
mostly what i needed to accept and embrace being autistic was information (especially from self-advocates as well as #ActuallyAutistic people who share similar multiple oppressions to mine), and a bit of a push.
so, self-diagnose? get diagnosed “officially”? both?
*if* you can “go through the official channels”, and *if* it’s going to get you something, sure. i did and i don’t regret it. it’s also an expensive and/or arduous, time-consuming process, in a lot of cases, but it can be paper in hand.
here’s some more things about community conflicts (and solutions), in the hopes to make things easier for whoever reads this, especially if you’re considering if you’re autistic, or are recently diagnosed (either self-dx or “officially”).
get away from the people who try to gatekeep who is and who isn’t autistic as quickly as possible, unless you have the stamina (a *lot* of stamina) to challenge or confront them. i’ve seen people become very overwhelmed in comments sections, because they tried to reason or argue with people that assert that self-dxing isn’t valid, that being diagnosed as an adult isn’t valid, or even (especially from some parents in “the autism community” — as in, parents and clinicians, most of whom aren’t autistic, and many of whom are cure-focused rather than self-advocacy and neurodiversity-focused) that you can’t be autistic if you mask your being autistic. this includes people who say “neurodiversity lite” things, but make the same assertions as anti-neurodiversity people do.
this is widely accepted as being false, both by people in the Autistic community, and by the standards bodies that publish the DSM and ICD – but they say it anyway.
simply put: they’re wrong. that corner of things is a “dumpster fire“, save yourself the stress and bother, if you can.
also, people who are against self-dx and adult diagnosis will claim that autistic people who are inclusive of *all* autistics, are doing that because they’re high-functioning. not only is that offensively anti-autistic, and anti-disability rights, it’s also ignorant of the work people have done, including autistic self-advocates who aren’t labeled as “high functioning”.
autvoid, n. the place in society where an autistic person, especially someone who has been marginalized or oppressed out of support and resources, lives. think “unmasking” (or not being able to mask) while living out in the world, but without a tangible diagnosis (of whichever sort), or the words to describe what you’re going through. can also refer to people who were assessed but not diagnosed, diagnosed but not told the results, or otherwise lacking in agency as an autistic person.
i’ve lived in the autvoid a lot. a vaguely-shaped form, buying groceries and getting “inexplicably” overwhelmed. melting down. stopped by a cop, and not able to say a single word. assessed in childhood, not told the results. a lot of experiences, not much in the way of answers. that was me for a long time.
some of us are assessed and/or diagnosed, but were locked out of the details. or were assessed, told, and nothing else happened. “You’re autistic, I think, or whatever. Get back to class.”
some of us live at home, sometimes, or all the time. including in adulthood.
the autvoid is a place where the very large subaltern that makes up *most* of our community lives. this doesn’t discount or erase the lived experiences of those of us who are diagnosed! people seem to struggle with this, and to be honest, i’m not sure why. it seems disingenous. perhaps they’re used to getting what they want, or are insecure in themselves? (see this post from silent wave blog for a critique of this “anti-self-dx” nonsense.) using one experience to try to cancel out another smells to me of oppression olympics. as i keep saying, and will keep on saying: “we are all part of one spectrum“.
let me preface this by saying: self-dx is as valid as ever, personally, culturally and economically. fuck off if you think otherwise.
i’m diagnosed “with” ASD now, as in officially. so if/when i need accommodations at work or school, i have something to point to.
the assessment process was sort of a nightmare (stress, unfamiliar building, new people), but I did it. it was very much on the clock, which for me, just underlines the limits of what a diagnosis represents. not in terms of its accuracy (as long as they know what they’re doing), but in terms of “how much can realistically be expected to get covered, given that time = money”. it also was stressful as hell, so “more time” isn’t necessarily a solution here, either. it was just the right amount of “oh, fuck” and “oh, good!”, given what can realistically be expected.
i think it’s really important to insist, if not demand, that your needs get met as much as possible, to whatever degree that’s possible. expect to be pushed back against, highly confused at times, and feeling like you’re being gaslit.
if you need accommodations for being partially or completely non-speaking: let them know in advance! i didn’t, and i wish i did.
also, the ability to bring someone along (if possible, it wasn’t for me personally) is important as well. let them know in advance about that, too.
the self-discovery (by whichever means) to diagnosis (by whichever means) process – self-dx, getting referrals, getting diagnosed (if that’s possible and desirable) – reminds me when i gender transitioned, in a way. trans people wind up with other diagnoses (yes, gender is a diagnosis), both false and accurate (but frequently false), just like autistic people. we get revolving doored for years, or decades, in both cases. this is finally getting better for trans folks (the present U.S. administration’s chicanery and corruption aside), is in process for enby folks, and still has a long ways to go for autistic folks, women and people of color especially. it’s not a fast, or easy, process, either way.
but it’s done! done is good. i’m “official”, so in situations where that *actually* matters, i can say “i’m official” and back it up. since i live in a country where the idea of believing someone at their word when they self-disclose isn’t always common, this is important. which is exactly why it’s total bullshit that it’s not available free of charge! also bullshit: it can affect access to some forms of health care. if you go this route, it’s important to know when and how to disclose: not everybody is friendly, not everybody has your best interests in mind.
lastly, and this is really important: anybody who thinks that autistic people who have significant daily support needs can’t self-advocate at all? that people who self-dx aren’t valid, and shouldn’t be welcomed into the Autistic community as equals? that autistic adults who mask, who struggle and try and fail and sometimes succeed in NT society, or succeed and fail over and over again, because the rules make no sense, aren’t autistic at all? fucking suck my shorts, you and your pathetic hate speech campaign that masquerades itself as concern. you’re simply wrong, and need to climb off your heavily entitled soapbox. “we are all part of one spectrum“.
ok, so i’m official. /whoop this chapter of life’s journey seems to be ending, so a new one can begin on its basis.
i think Dionne Farris sums up my feelings best here. listen to the tracks for the full feeling and sentiment.
Hello Morning, Now when does the fun begin?
Goodbye Morning, Sorry it had to end
But see I cried just a little too long
Now it’s time for me to be strong
Everything’s so crystal clear now
All I needed was time
Everything’s so crystal clear now
I’ve cleaned my mind
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.
Detroit, in Sorry to Bother You, wearing a pair of earrings that say “MURDER MURDER MURDER” and “KILL KILL KILL”
CW: cartoon violence, graphic imagery, #metoo, Pulse massacre, Copious Steven Universe spoilers, copious Sorry to Bother You spoilers, copious interest stanning for Boots Riley, functioning labels, passing as neurotypical, whiteness, cishetness
“Look at this place, look at your faces. They’re shining like a thousand shining stars Isn’t it nice to find yourself somewhere different, Why don’t you let yourself just be wherever you are. Why don’t you let yourself just be somewhere different. Why don’t you let yourself just be wherever you are.”
I’ve had two different coming out processes around being Autistic.
In the same year.
I’d been struggling to find a way to disclose as Autistic for a while. Getting close to finding support materials, then delaying it. Starting to come out, getting scared off (or talked out of it by some allistic friend). Trying again, melting down, waiting. It took two years of sustained burnout, very detailed visual thinking (note to self: don’t read graphic #metoo depictions, don’t read any accounts of the Pulse massacre either), sensory overload and hyperfocusing to decide to take matters into my own hands. Which I did: I took the tests, read the DSM autism criteria, watched videos from Autistic YouTubers, found basic support materials for autistic women, put it all together, done.
I started telling friends online, and discussing things with other Autistic people. Nobody objected, everybody was supportive. Which was a huge relief! “I’m Autistic! Yay.”
I also had a lingering doubt that there was more to this for me than what I kept reading about in the books I picked up, all of which were geared toward Aspies, because that’s what I could find in terms of Autistic 101 self-help books. Once I got past the diagnostic criteria (which was a fit), much of what was being presented as “life solutions” seemed too “shiny“, white, frequently cishet, and written for someone who is closer to “almost neurotypical” (or who views themselves as such). A notable exception to this: Cynthia Kim’s excellent “I Think I Might Be Autistic“, which I found to be much more accessable, informative and not overwhelming in tone or scope.
Further, I deliberately rejected being part of mainstream society as much as possible in my teens (both by choice and out of survival), and shifted my focused to activism, the arts and spirituality. (I also worked full time in the computer industry for years, which felt like living a “dual life”, and frequently resulted in my being notebook-throwing level miserable. I left that behind in 2001.) In terms of useful life wisdom, these books weren’t providing me with much. I was more interested in making informed decisions about if I should try to integrate into society as an Autistic person from a more well-informed place — or more likely, have better tools to inform people with in the creative and activist circles I’ve been part of most my life — but I tried to keep an open mind. “Can’t I just live in a van?”
Nevertheless, my lack of finding a place that fit made me nervous. If I’m not “high functioning”, and I’m not in need of extensive daily support, then who am I? The best solution I could find to “work doesn’t work for me” is “start a business”, which doesn’t work for me either; even if I wanted to do that, I’d need to spend money to handle things that I don’t have the ability to juggle, or become a boss. Allow me to quote from the IWW Preamble here: “The working class and the employing class have nothing in common. There can be no peace so long as hunger and want are found among millions of the working people and the few, who make up the employing class, have all the good things of life.”
The last “high functioning” book I read was full of dire predictions about the risks of being unassessed later in life, and rather unpleasant (and paradoxical) attempts to unmask whoever was reading it as well. The cognitive dissonance of it was too much to bear, and I started to come unglued.
I am very good at patching my head together on my own. (I’ve got lots of practice.) Life throws something at me, I learn from the experience and adapt. When “something” is more like seeing movies in your head for a month because you read some horrible story, or a series of them, or something affecting you so deeply that it feels like your skull is being split open — that’s OK. I’d learned to take this sort of thing in stride. Pulls out industrial grade self-care kit, gets to work.
So, I know how to fix things, even if i’m the thing being fixed, and I’m the one doing it. Yay! Problem solved, right?
No. I was a mess.
Cassius Green squares off with Steve Lift in Sorry to Bother You
“This is when I started to panic. A little bit.” – me, mimicking Garnet
“Sit. Down.” – STBY
I was in freefall. I pieced my head together well enough, but everything was setting me on edge. It was as if I was living in an meltdown tunnel.
I started reviewing my past in more depth, my childhood in particular. My childhood had no filter. I stacked rocks. I stared at shiny things. I’d read the encyclopedia, or go through the same book for hours. I’d stim in whatever way I’d please, or get stopped from doing so. While a lot of things were rather intense (I remember throwing up in the green stamp store as a toddler because everything was way too green), the most overwhelming thing in my environment were authority figures and other kids. I’d run into closets at the school, chase my crush’s boyfriend when my neurology spiked, reinvent the rules of a game on the fly while we were playing it together, fight back. When I got sufficient support from teachers (which did happen twice), I’d focus on school work, and start to relax. In those cases, the teacher served as a sort of stand-in for friends. The moment I’d move to the next grade, the support was gone, and everything would fall apart again. I decided to bail on society when I was 14, left high school when I was 16, and save for a few rather miserable years where I half-assedly and very angrily tried to assimilate in my 30s, that’s where I’ve lived since. This is not an “Aspie success story”. I’m not even sure it’s an Aspie failure story. The “fitting in, eventually, but still being sort of quirky” narrative wasn’t me. (I also think that narrative is assmiliationist, but it seems like some people are able to sustain that better than I can — frequently at a cost.) I’m not sure that I’m that different from when I was younger, I’m just an older, more experienced, less traumatized version of myself.
Eventually, I started finding more cogent answers on the basis of lived experience, not just diagnostic criteria. I pieced together that “Asperger’s” no longer exists, “functioning labels” are flawed and offensive, and that there’s community to be found across the entire spectrum — but that it’s less likely to be found in a book from a mainstreaming-focused publisher. I was wounded, but I was magical as well.
“You might not believe it You might not believe it But you got a lot in common, you really do You both love me and I love both of you”
What saved me was reading people who have a strong self-advocacy narrative around being disabled. I can’t integrate into society, I’ve tried. Perhaps in the future, I will, but I’m not going to risk setting myself up for more failure. It looks way too much like “I didn’t even know that you’re autistic!”, which is both offensive and not who I am. People know that I’m different well enough to comment on it, resist it, give me grief over it all my life. I don’t hold any resentment over that (now, at least), but I get the message. It hurts to say that I’m “too weird” for even “weird subcultural spaces”, let alone mainstream ones, but I am in a lot of cases. I discovered support materials that were more of a fit – “Loud Hands“, “All The Weight of Our Dreams“, autistic bloggers who write about being Autistic as a disability (including bloggers with multipledisabilities), all from a self-advocacy and crip liberation perspective.
I also started to realize – admit to myself, really – that I’m not always capable of speech. Definitely not fluent speech. When I started writing this, I was coming off of two days where I could barely speak. This is probably tied to burnout in part, but I’ve always preferred not speaking. When I speak, I’m not speaking as much as translating (writing is the same way for me, it’s just easier), and unless I’m scripting, I’ll have to pause at times (or go mute for a bit) to “catch up”. When I am speaking, I do love to talk about interests with friends that I trust, one-on-one.
Having challenges speaking was the last piece in the puzzle (cue Autism $peaks détournement) — accepting this was what allow me to feel whole again. I let go of “Autistic as in different” and grew into “Autistic as in disabled”. This also maps to a growing body of information that women and non-binary people (and I’m presuming, trans people as well) have “more pronounced symptoms”, or as I prefer to look at it, “That’s right, we’re even more fucking awesome, even as many of us have more challenges living in a society that was never designed for us in the first place“. I gave myself permission to say goodbye to the high-functioning (?) person I thought/hoped that I might be, but that also left me with a strong “wait…oh, shit, this is deeper than I thought” feeling when I considered that as a possibility, so I could be who I really am, without reservations.
“It’s over, isn’t it? Isn’t it? Isn’t it over? It’s over isn’t it? Isn’t it? Isn’t it over? You won and she chose you And she loved you and she’s gone It’s over, isn’t it? Why can’t I move on? It’s over, isn’t it? Why can’t I move on?”
“A cop lives inside of all our heads We’re gonna kill him dead, we’re gonna finish what we started A boss lives inside of all our heads We’re gonna kill him dead, we’re gonna finish what we started”
“This is Cassius Green. Sorry to bother you,” – STBY
So…what’s next?
Running after some “You’re almost neurotypical but not quite, back to work” unachievable goal that recedes off into the horizon endlessly (until it all falls apart and I’m left exhausted and unfiltered), will simply never work for me. In a lot of ways, being someone who integrates into the frequently ableist (and racist, and sexist, and…) activist spaces I was part of doesn’t really work, either.
If the theme of my childhood was being who I truly am without reservations (and paying the price for that), this is the recapitulation.
I wanna know you, know I know you know me I want a fire that can extinguish the sea I wanna crush my loneliness into dust Please ride with me until this whole thing busts
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.)
— 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.
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.
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. ✊🏽
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.
CW: use of functioning labels to “call in” exclusions of less visible forms of functioning hierarchies, patronizing mainstream media “autism think pieces”
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.
A personal blog about autism, neuroqueerness and transformational liberation
