Category Archives: #actuallyautistic

life in the autvoid

TW: institutionalization, false imprisonment, pathologizing, school system, ableism, oppression olympics, “shiny” aspies

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.

a lot of us live there. 50-60%, by one account.

some of us live out in NT society, and suffer as a result.

many of us are undiagnosed, or misdiagnosed.

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.

some of us are institutionalized, or in prison.

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“.

in my view, if you’re autistic, you’re autistic. if you don’t know, you’re still autistic. if you’re being oppressed as a result, you’re *definitely* autistic. “Autistic” with a capital “A”, even. you need — and deserve — support! we just haven’t found each other yet, due to a lack of accessible, useful resources.

here’s to being found. ✊🏽

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.

#actuallyautistic: origins and the AQ test

(Caveat: diagnostic tests are an indicator, but not the “final word”, including for self-dx. (Is there a final word? What are words?) I’m working on a list of autism-themed books and blogs, which provide a lot more context.)

I found these posts the other day, thought I’d share.

Why actually autistic tag

https://www.tumblr.com/thelamedame/26098953978/the-actuallyautistic-tag-since-there-seems-to-be

(Possibly) controversial opinion:

I think taking the AQ test more than once might be necessary in some cases.

The first time I took it, I “passed”, but after I thought about it for a couple of days, I realized that I might’ve taken the test incorrectly.

The test is designed 1-4, not 1-10 (and scored 1-2), from definitely agree to definitely disagree. Which for a “spectrum” test, is an…interesting choice for testing format, but whichever.

I kept thinking “Why does this feel like it should be numbered 1-10? There’s things that feel like I should’ve answered 7/10, in terms of per-question autistic assessment, that were…somewhere else. It’s as if I was denying what the autistic inference is (“Do you like trains?”) for some of the questions, or perhaps the mapping of the options itself threw me.” (This is a common thing for me with multiple choice questions. “Well…maybe? It really depends on this, and this, and this, and this, and. Also, “this question is offensive, so *answers question sarcastically*, or feels an impulse to. Or the “boxes” in the test format contradict each other, or don’t represent an accurate answer — what does “slightly” mean? Slightly relative to what?”) I’m not sure if this is denial, or some other thing, but something’s off.”

So I took it again, and my score went up. o.O

Also, if you’re not aware of the issues surrounding how autistic women have been misdiagnosed or ignored, including on the basis of now-outmoded criteria, it’s good to know about:

Understanding the Gender Gap: Autistic Women and Girls

This includes questions in the AQ, which is why I’m mentioning it. The classic example is “trainspotting and math” sorts of questions/assertions.

In case anybody is curious, my (self-administered) AQ scores after repeated testing are, in order by date: 33, 41, 42, 48. The last one was done after having two meltdowns in a week, while recovering from one burnout cycle, and working to not wind up in another one. My guess is that my mask fell completely off. “The Mask coming off is exactly what happens during the Autistic Burnout period.

Also, I’m going through a process of letting go of being closeted (and the masking and denial that comes with that). So it’s possible — and most probably, likely — that I was in partial denial the first time I took the test. I think it’s possible that the first score, the second two, and the last one are clustering relative to my levels of self-acceptance as autistic. That said, it’s just one test. It’s a process.