Category Archives: Functioning Labels

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.

ABA, Autvoid, Functioning Labels, Liberation, Parents, Uncategorized, Violence against us

Erasure

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Trigger warning: long read, anger, suicidality, ABA, trauma, functioning labels

This pattern: adaptive skill -> “intelligent” -> high-functioning. wtf.

Further, this pattern: need for support -> “lack” -> low-functioning. Again: wtf.

First off: it’s ableist. That’s a given. Functioning labels, intelligence and correlating adaptability to both (and its respective presumed opposites) are *all* flawed concepts.

That said, I’d like to talk about how this makes no sense. Not just because functioning labels are ableist, but how the entire pattern doesn’t make any sense.

A *lot* of being viewed as high-functioning is about masking, and possibly having some particular set of skills or talents that are viewed as “humanizing” (and under capitalism, valuable). I can do both (even if it’s sending me careening towards a meltdown while I do it), up to a point — then things fall apart. So, rhetorically speaking: what does that make me? It is virtually impossible to memorize every possible social interaction; even if some hypothetical person did so, new ones emerge regularly, if not constantly. No amount of scanning a database of situations and scripted responses, and affective empathy (if needed) can fix that. It’s as if those of us who get viewed as “high functioning” (or in some mixed state of high and low functioning, if someone is bothering to pay attention) are the opposite of the “puzzle piece” metaphor; instead of being a neurotypical person trapped inside an autistic shell, we’re autistic people trapped in a learned/assimilated neurotypical one, to varying degrees.

A huge part of this is due to viewing typed or spoken communication as a key marker of ability and intelligence, if not proof of intelligence itself. When I’m non-speaking, does my ability shift? When I melt down? When I’m non-compliant? Is an IQ test an indicator of anything at all? (If you answer is “yes”, consider: even the official WAIS site encourages people to study in advance for testing. So then, what is being tested? If your answer is speed of response as an indicator of intelligence, perhaps consider that this concept is also flawed and ableist.) Also, the lived experience of having a skill or talent in society is predicated on a complex set of social skills, and it’s rare for accommodations to be made based entirely on that skill or talent, especially if you’re marginalized or oppressed. <sarcasm> So much for talent being mapped to functionality with the inference of social acceptance and inclusion! </sarcasm>

That said, there’s also the problem of viewing “low functioning” as lack rather than difference, of equating challenges and the need for support through the lens of intelligence, if not correlating lack of speech to lack of intelligence to lack of capability. Everything from the rather condescending ways people approach facilitated communication on an individual basis, without allowing for context, training or the person’s ability to type independently, to the ways that exhibiting high-functioning traits is equated with being high functioning at all times (or for that matter, with “not really being autistic”) are rooted in biased assumptions about functionality, both “high” and “low”.

Here’s a deeper problem that I see, especially for autistic youth: either through adversives or positive reinforcement, ABA presumes making an allistic child out of an autistic one. This alone is abuse, but on top of it, there’s a presumption that you’ll ditch that “fake child” (the autistic one) and become the real one (the made-up allistic one) that was buried under a pile of broken puzzle pieces. It’s very abuser-as-false-savior-like, as a “therapeutic” approach.

The problem with this is that it’s a lie. The real child is the autistic one, (TW: ABA, coercion, violence) the rest is forced and/or bribed compliance. Further, if you remember who you actually are in adolescence and adulthood, this creates a tension between your real self and the fake allistic one — which is masking at its most harmful. It can lead to forgetting who you are altogether, so you know that your mask isn’t real, but you can’t get back to who you are before you masked, either. This was coming up a lot on the #takethemaskoff campaign: autistic people kept saying “I’ve been masking for so long, I don’t even know who am anymore.” I know what it feels like to start to forget. It’s like someone is murdering you, and you get to watch. There’s masking out of necessity and survival, as well as masking to get your wants and needs met — then there’s masking that can be overcome, safely, or that could if someone hadn’t been subjected to years of forced compliance. (These categories aren’t necessarily mutually exclusive, either.) In my opinion this is part of why there’s a link between suicidality and masking.

There’s a variety of ways that ABA and directly ABA-like things are foisted upon autistics. I know that ABA as a practice has been around since the mid-1960s, and the first assessment questionnaires have been around since then as well; my parents used behavioralist techniques that map to ABA more than closely enough to parallel ABA itself. Why that is, I don’t know (although I have my guesses), all I know is that it was traumatizing as fuck, and once the “compliance protocol” was established, it *never* went way. Not just in childhood, period. I have had to unlearn “people tell you what to do, you do it”. It’s a life skills anti-pattern.

What helped me find modes of expression and learning in the school system was *NOT* being assessed, and the more negative aspects of what my parents did at home. What did were teachers that encouraged students to find their own ways of learning and communicating, instead of trying to force us into a box. I thrived under these teachers, and didn’t otherwise. (It’s probably important to point out here that I was frequently what now gets labeled as combative, non-compliant or passive otherwise.) By high school, I learned how to coast, until I was forced out for other reasons. This wasn’t just educational, it was inter-personal as well. I was literally rescued from some personal hell, assessment included, twice — only to fall back into hell until I left the school system altogether, and I have no intentions of forgetting that.

Perhaps what is flawed here is both the entire concept of intelligence in the first place, as a presumed indicator of cognition as well as ability, if not sentience — as well as the idea of “functioning” being a fixed state, that can only be deviated from by regression or “cure”. Both of these assumptions are dangerously ableist, if not eugenicist in their world-views. This is the sort of never-ending array of conundrums that Melanie Yergeau talks about — the frequent assumption is that someone is either too autistic or not autistic enough to self-advocate. This basically is a toxic worldview, and deserves to be challenged as a pernicious threat to our well-being and survival. Self-advocacy is communication, and non-compliance is a social skill, regardless of how we have been labeled, how we communicate and express ourselves, and what levels of support we need.

Autistic community, Autistic People of Color, Autistic Women, Functioning Labels

“Where have you been experienced?”

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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“.)

#actuallyautistic, Autistic community, Autistic Women, Functioning Labels, Liberation, Self-advocacy, Uncategorized

Neurodiversity lite, or assimilationist plus?

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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.

Autism, Autistic community, Functioning Labels, Labor, Passing/Masking, POC

Shinylander: only the most high functioning shall survive

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wtf, Temple Grandin. *anxiety intensifies*

I don’t buy this assimilationist, anti-worker, anti-poor nonsense. Full stop.

I’ve worked way too many jobs where i was miserable, my coworkers were miserable, the department heads were miserable — and those were the sort of “not just a job, a career” sorts of positions she’s talking about.

It’s not just her, unfortunately. Some corners of the Autistic community, especially among people who tout being high functioning (or being “cured”) as a panacea, have a ways to go in terms of:

– not playing high/low, aspie/autie games, especially “high-functioning” punching down towards “low-functioning”
– active inclusion and acceptance of POC
– active acceptance of people who self-dx
– acceptance of neurodiversity, neurodivergence and neuroqueerness in general

We’re a community, not a horse race. Asserting that we’re not dealing with the same core issues is bunk, even if they manifest to varying levels from person to person, and within a given person.

When people try to draw a hard distinction between auties and aspies, or the employed (and careered, no less) vs. the unemployed, what they are doing is attempting to reify passing, including passing as allistic and/or NT, as well as “I never would’ve guessed that you’re autistic” sorts of mind games. It may work for them to do that, and that’s fine, but insisting that everybody be like them is both cruel and divisive.

Counter-propoganda for your informational needs:

We Are All Part of One Spectrum

Functioning Labels, Again

Decoding the High Functioning Label