Category Archives: Clinical things – meh

Abuse, Autistic community, Autistic People of Color, Autvoid, Bullying, Clinical things - meh, Disability justice, Emotions, Functioning Labels, Liberation, Venting, Violence against us

Autistic self-affirmation superstars vs. busy body identity policing bullies

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TW: venting, community dynamics/conflicts, bullying, identity policing, gaslighting, curebies, counter-aggression, racism, ableism, police shootings, violent assault and murder of autistic people, “bad autie” stereotype

Fair warning: this is a much harsher tone than what I usually post here.

Every community has their self-appointed identity police, that constantly ride people for not being <thing> enough. I’ve been carefully considering the situation around this, at times in detriment to my own health and well-being. Given that I appear to be far from alone in this unfortunate outcome, here’s my carefully considered summation:

Fuck off, you abusive curebie dungnuggets. I don’t care what you think.

I know that there’s people who think the opposite: that there should be far more gatekeeping of who is and isn’t Autistic, not less, but frankly, again: I don’t care. You don’t get to control the rest of us like that, it’s cruel, if not sadistic. I refuse to even entertain this sort of assimilationist, supremacist, gaslighting as fuck garbage thoughts past that. If every once in a blue moon, someone sincerely questions if they’re autistic, then finds out that they’re something else, that’s *COMPLETELY FINE AND HAPPENS IN ALL COMMUNITIES*. A few very annoying VOCAL members of our community act as if there’s never been a single straight person who was “lesbian in college”, and *SOMEHOW*, the LGBTQIA+ community is doing just fine, despite this. (Don’t assume that coming out as LGBTQIA+ is less life-changing and critical than “coming out” as Autistic, either. They’re both significant life decisions, with their own benefits and costs.) Autistic-questioning people aren’t flooding the gates, that’s some terf-like nonsense, settle the hell down, please.

I’ve seen this happen in the LGBTQIA+ community as well. “Who gets to belong? Who is really trans? Do you have to have surgery to *really* be trans? Are enbies valid? Is “autism is a gender” valid?” Sometimes, it can feel as if Tumblr has taken over the whole damn planet.

That said, I got this sort of thing cleared up for myself years ago, when I read this article. (Fair warning: it’s long. 6,000 words long.) We may or may not be past the point of having to guardedly form ourselves as a (figurative) nation, but I’m very certain that policing who gets to be Autistic is toxic, and benefits nobody, including the people insisting on trying to do so. (If this is you: think of all the times you could’ve been stimming or happily enjoying interests instead of obsessing over who does or doesn’t belong.) I much prefer Amy Sequenzia’s approach, which is also the position that ASAN takes, and that many members of our community (and researchers) share as well. *This* is how we learn how to share and grow together as a community – and in turn, increase the probability of being able to shift public opinion of us in our favor, by fostering a mutually supportive and beneficial community for *all* of us. What policing who is or isn’t autistic does is reinforce the idea that being Autistic is something undesirable, because <sarcasm>after all, we’re made up of sufferers and Potentially Dangerous Visual Clickbait, erm, Persons™</sarcasm>,  not a vibrant community of individuals, each with our own unique life experiences.

“But really, what if someone’s just faking because they think autism is a fad?” Are you kidding me? Autism has never been a fad. (I swear, if you compare this to white people appropriating Black or brown experiences, my mixed-race ass is personally going to stuff a smelly tube sock in your “stfu, racist” mouth.) Every group of marginalized and oppressed people has their “what if we’re all like you, a little?” moment in the media spotlight, and that moment has mostly passed for us (and was barely a moment – a mostly shitty moment – to begin with). I’m a *lot* more concerned over the tendency to frame us all as dangerous or even murderous (cliff’s notes version: we’re not only not dangerous, we’re far more likely to be violently assaulted or murdered than the other way around). This is patently obvious to anybody who uses their preferred search engine to find out.

There is a standing bias against people self-dxing. This shows up in subtle ways as well as obnxiously obvious ones (as noted above). “Really, being clinically diagnosed was the best thing that ever happened to me. It’s the way forward.” No, *informed self-awareness and acceptance* is the way forward, how that happens depends on someone’s life situation. Not everybody gets “caught” (word choice deliberate) by the school system, not everybody can afford diagnosis, not everybody sees a reason to “confirm” what they’ve come to on their own, and who knows how many of us are in some sort of liminally autistic void between the societal goalposts. It shouldn’t be anybody’s job to decide that someone isn’t Autistic, “officially” or not. That ultimately is a personal choice, even if there are differences of opinion, clinically or on a community level. Go live your own life, we already have way too many people trying to control (or end) ours. Priorities.

What if we talked about being Autistic as a self-affirmation process, rather than diagnosis? By which I mean, whatever community-based tools and *actually supportive* community processes we have in place to figure out if you’re autistic, that’s fine, as is encouraging autistic-questioning people to take their time and do their research, and from that, choose whatever diagnostic pathway is best for them, including not getting clinically diagnosed (or even, depending on the person’s situation, even letting other people know that they’re Autistic, on the basis of *their* needs, not someone else’s). (BTW, this is no different than the process for people who come out as trans. Again: life-altering choice.)

Self-acceptance is where the actual healing happens, regardless of age or background. Whether that’s by doing a well-researched self-diagnosis, via a clinician, or both — no matter if you’re six, or 16, or 36, or 60, or 100, your life is yours, you Know Why, that’s enough. Welcome to our community.

Autistic community, Autistic People of Color, Clinical things - meh, Functioning Labels, non-speaking, non-speaking (at times), Self-advocacy, self-dx

autism diagnosis: deciding on pathways

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trigger warnings: anti-neurodiversity, anti-self-advocacy, identity policing, ableism, anti-autistic nonsense

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.

cynthia kim addresses this as well:

Adult ASD: Self-diagnosis or Professional Diagnosis?

Adult ASD: Moving Forward After Diagnosis

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”.

Decoding the High Functioning Label

Living My Disabled Life: My Story Is Mine to Tell Part 3

About The Film

instead of getting stuck in the drama of all that, read cynthia kim’s excellent “I Think I Might Be Autistic“, and read or watch the blogs and videos of self-advocates, such as Amy Sequenzia, Amethyst Schaber, Lydia Brown, Kieran Rose, and Neurodivergent Rebel. if you’re non-speaking to whichever degree, read this! as well as the book “Typed Words, Loud Voices“. If you’re looking for autistics of color, Morénike Giwa Onaiwu and Black Autist. if books are a good means of getting information for you, “Knowing Why“, “Loud Hands“, “All The Weight of Our Dreams“, and as mentioned previously, “Typed Words, Loud Voices” all are excellent introductions to the Autistic community, and are self-advocacy focused. lastly, familiarize yourself with the Autistic self-advocacy organizations, such as ASAN and AWNBN.

Autistic community, Clinical things - meh, self-care, self-dx

Self-dx and clinical dx

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TW: anti-autistic (allist) assumptions, ableism, clinical assessment (for ASD), ABA, child abuse

self-dx is not only valid, “official” (clinical) diagnosis isn’t even an available choice for a lot of us, for a number of reasons, including economic ones, as well as numerous forms of oppressive bias. in that case, self-dx is not only valid, it’s the only option.

it’s wrong to try to invalidate people over it, and it’s a personal decision, regardless. it’s nobody’s business.

imagine if people said: “yes, but are you *really* gay? are you *sure* you’re trans?”

people in fact do this as well, and they’re also wrong!

this isn’t a complicated thing – people treat it like it’s a debate. there’s no debate.

there’s also a more subtle form of invalidation that happens sometimes:

“self-dx is valid! really though, getting officially diagnosed is the thing that changed my life. it’s so important.”

the missing “for me” at the end of that sentence isn’t a minor thing. it infers that there’s a social heirachy, relative to validation, and even acceptance.

even the term “official” diagnosis has bias in it. so, if you don’t have a clinical diagnosis, you’re unofficial? like a knock off bag at the flea market?

the best write-ups on “get diagnosed or not” i’ve read are these:

An Autistic Diagnosis

https://autisticsciencelady.wordpress.com/2018/12/21/the-neurotypical-autism-diagnosis/

if you’re able to access getting assessed: don’t expect miracles. figure out what it’s going to get you, and what it *won’t* get you, then decide. do your own research beforehand, to whatever degree is possible!

*YOU*– yes, you – are the best arbiter of your own neurology. use whatever means are at your disposal to your best possible advantage, including refusing “treatment” if it’s not of benefit to you. (this applies in general, including if a dx is being forced on you, btw.)

if anybody tells you otherwise: they’re not your friend, and you don’t owe them an explanation. period.

if someone tells you that you’re not valid because of self-dxing, of being diagnosed as an adult, of not being diagnosed by a doctor? repeat these words:

“i don’t care what you think. goodbye.”

i don’t care who is saying it. professionals, parents, *deep sigh* other autistic people.

if you can get away from them, do so, they’re being abusive and don’t have *YOUR* best interests in mind.

footnote:

when dx is decided for us without our consent, it’s frequently traumatizing.

it may be useful afterwards, especially if you’re diagnosed as an adult, or not useful at all (or even harmful, if you’re subjected to ABA) — but the process itself can come as a shock.

these two things – choosing to pursue a diagnosis (including self-diagnosis) and clinical diagnosis that’s not by choice – are not mutually exclusive! we can work together. in fact, we need to work together, to take back the media and social narratives from corrupt organizations such as Autism $peaks. this includes allies — partners, friends, parents who accept and listen to us, and work together with us as advocates.

there’s no shortage of splitters and haters over this. ignore them all, and work together on getting us all free instead.

Autistic community, Clinical things - meh, non-speaking (at times), Self-advocacy, self-dx

Assessment is finished, like the first morn

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*cues Yusuf*

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

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.)

ABA, Clinical things - meh, Conversion Therapy (Is Evil), Interests, Music, Queer/Trans, Writing

Autism, ABA and The Arts — Childhood Memories

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A mind-bendingly difficult thing from my past that i’m coming to terms with:

I might have been screened for and possibly diagnosed with autism back in grade school, or some sort of gifted + autistic, although that was before “doubly exceptional aspie” was a thing (early 1970s).

I went through the Very-Concerned-Teacher-to-shrink-to-non-staff-specialist gauntlet for a while. I definitely was being assessed for cross-gender behavior; pattern matching games and a “mind in the eyes” test was part of that.

That’s mostly sorted for me now, or sorted enough that I’m slowly moving from being floored by it to acceptance and integration of what happened.

What’s still too raw to talk about in much detail: realizing that writing and music was the communication vector that might have kept me from getting aggressively ABA’d or institutionalized in some way or another, right at the moment when modern “child autism” was starting to be acted upon (as in, ABAing autistic children). So, it’s a toss-up as to what would’ve happened, had I not lucked into writing and music as “ok, well, you’re ‘creative and sensitive'” as a result. Things went from “You’re a problem. *sounds alarm*” to “You’re innately talented, so of course you’re that way”, quickly, come fifth grade (homeroom teacher) and seventh grade, partially. I never was labeled as “gifted” within the school system, but writing and later, music was how I found my way to forms of support that were actually supportive, rather than more aggressive interventions, both informally and formally.

It also was a way to express myself creatively in a classroom setting, rather than *stacks small stones away from the other kids* or *runs into the closet, overwhelmed*. In other words, I was “learning how to behave”, so the early negative reinforcement machinations of ABA-like things wound themselves down. This unfortunately did *nothing* to stop students themselves from aggressing against me, but it did change the classroom dynamics, including the times where I was flunking out, in a class where I had tested beyond grade level or otherwise was capable of doing the work. The right-wing “take” on this is to attribute this to laziness, but…well, no, actually.

Same goes for my family — if my parents were presented with a diagnosis of autism, or as was starting to get phased out, schizophrenia as a clinical “who even knows” place-holder for autism (this all happened in the early 1970s), it’s very possible that my parents took one look at the school system and attempted to intervene on their own instead, because that was my family, back then. (This was before my father’s drinking, and the subsequent bullying and aggression kicked in.)

So when my active interest in spinning and stacking games shifted to reading the dictionary and their encyclopedia set, then once encouraged, to writing and music, it was tolerated, and accepted, both in my family and at school. “Narrowly escaping a worse fate” is my best guess and operative assumption, for now.

#actuallyautistic, Autism, autistic burnout, Clinical things - meh, self-dx tools

#actuallyautistic: origins and the AQ test

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(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.