as mel baggs explains, “don’t use AAC, you’re not disabled enough, not non-speaking enough” is the wrong way to approach things.
i’ve wanted to use AAC for years, and hid out a lot when i can’t speak, in part because of my assumption that i might offend someone if i used AAC, or learned how to fluently sign. it held me back, both personally and in terms of interacting in society.
the more people use AAC, the more common it becomes, which makes it better for *everybody* who can or might benefit from its use.
i’ve spent a lot of my life hiding being non-speaking, but i’m working on that being no longer the case. it messes with my communicating with other people (imagine having to rehearse most of your conversations, and what might happen as a result), and burns me out (imagine feeling like you’re trying to shift a large truck out of a stuck gear).
yes, i can script, and mask speech, at times. it doesn’t always work. i’ll be speaking, masking away, then…i can’t. so then i start trying to cover that up. until that doesn’t work either. so then, i’ll shrug, smile and silently hope for the best. then i’ll burn out, hide out or both.
go to the store? prepare in advance. go to a meeting? prepare in advance. meet a friend? prepare in advance. if i can’t script, mask. if i can’t mask, fake non-fluid speech. if everything shuts off, shrug and smile. pray not to get detained, arrested or 5150ed.
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
A personal blog about autism, neuroqueerness and transformational liberation