Category Archives: Autistic community

“Where have you been experienced?”

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“.)

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.

Community Organizing Beyond “Officially Diagnosed”

There needs to be a “misdiagnosed, undiagnosed and suppressed diagnosis” caucus of sorts. This is important at face value, but also because it dovetails into:

– Under-representation of women and trans people

– Under-representation of people of color

– Under-representation of working class and working poor people (because of cost + misdiagnosis)

– Under-representation (and contested representation) of adult autistics in general

This also impacts on the quality of (beneficial) research, as well as the tendency for research to focus on “cures” rather than social accommodation and support across the spectrum.

The lack of beneficial research + scare tactics = the dominant paradigm around autism, especially in the U.S. and parts of Europe (but not the UK, it seems). (Don’t @ me about Brexit, I know.)

This also requires having an org(s) or movement(s) to have a caucus in to begin with, though. There’s community-based orgs — https://www.aane.org/ comes to mind — but they’re few in number.

ASAN is focused on policy and lobbying, AWNBN is focused on support and resources. All of which are incredibly important, but there needs to be more.

As per usual, the “autism advocacy” groups are actively hostile to self-advocates in a lot of cases. There’s people working to rectify that – but they’re few (if not singular) in number.

Meanwhile, “zomg the vaccines!!!” seems to have gotten supplanted with “zomg, school shooters!!!!” and “zomg, neurodiversity is a cult!!!” <- actual things that actual people say, loudly and repeatedly

Our neurodivergent selves are right here. Feel free to talk with us anytime. Meanwhile, there’s a lot of work to do, and this should be part of it, I think. 💪🏽 ✊🏽 ❤️ Onward.

Conflicts

Confession: I stink at community conflicts. For one thing, I overwhelm easy. Not that this keeps me from raising hell – if anything, I’ll go right for the oppression vector and start (metaphorically) swinging at it, even if it’s burning me out. I tend to wind up in polarized positions — I’m good with that, but it also means that the stakes are higher.

Autistic organizing feels different to me than anything I’ve been a part of politically, though. The closest thing I can think of is the trans community, but even that’s a coalitional effort, and while all of us are marginalized (seriously so), some of us are more oppressed than others, in fairly direct ways. The social dynamic seems to map to being completely fucked, a pretty big apologist, or worse – and from there, the usual range of oppression dynamics apply. Women are more disadvantaged than men, people of color are more disadvantaged than white people, poor and working class people (which is most of us) are more disadvantaged than wealthy people. My running “not a joke” joke about not being sure if it’s the 1950s or the 1590s seems more and more apt, the more I learn. There’s a lot of shit going on against us that’s horrible enough that I don’t even know to what degree I should put it on blast; if anything, the message I get back is “That’s so completely horrible, I don’t even know how to process it”. I didn’t, and I’ve been through some heavy shit. So it’s no surprise that things can wind up very, very polarized.

It’s not like other situations I’ve been in, where I was the one pointing out the inconvenient truths that nobody in some group or collective house or affinity group or whatever didn’t want to address — this is like the truths are right there on the table, in some sort of “Sauron? (Y/N)” sort of way. “Well, let’s try to be reasonable and hear all sides” doesn’t carry much weight, nor should it.

The self-check I’m doing here is that I tend to be a polarizing force in a lot of situation; it’s likely part of my neurology, as well as my background. Which, in a room full of people with similar neurologies (and frequently similar tendencies towards very strong views and tendencies to be all in, do or die as mine), could get…contentious. I’m down for it, though. ✊🏽

There are problems here that I’d love nothing more than to avoid, but I’m pushing myself to stay aware and ready about. There’s no magic potion that makes everybody who’s autistic (or another other category of marginalization and oppression) free of oppressor behavior, nor is there any spell that can make people automagically not have a social impairment.

That said, I think that trying to address social conflicts with more social rules, when someone is “impaired” in a way that affects that, is some sort of sinkhole. Saying “grow a pair” (regardless of gender) isn’t always going to work. There’s approaches that address this, they’re getting underutilized. Presuming a workable level of good faith (as in: I’d actually like to change, but I don’t know how), telling someone why their behavior is harmful, and how that can affect people as a result, works. We learn social situations, we don’t abstract them.

People can use disability to excuse oppressive behaviors as well, though. The current example I’m referring back to these days is “Brooklyn Becky“, who turned out to be alt-right, apparently.

That’s a pretty clear line, even if someone “doesn’t get the rules”. “Anybody who isn’t alt-right: come get your friend and talk some sense to them in a way that they’ll get”. Or just ignore them, because that’s crossing a line that I’m not gonna put up with, nor should anybody else, in my opinion.

The classic “Oh, that’s what that’s about! I didn’t understand how that works. Thank you.” learning pattern is a real thing — it’s just that it’s not *always* true. White people are notorious for playing “I don’t have a problem, you have a problem” games with people of color — and if that doesn’t work, they’ll start making up problems to try to force people into silence. This is far from something that’s unique to the disability rights community, I’ve seen white people in a variety of activist communities do it for years. As much as I’d like there to be an easy solution to this, I think we’re dealing with the same dynamics that exist in the society at large. It’s not pleasant to see allistic social norms, racist social norms, sexist social norms, even ableist social norms being acted upon, but what I keep reminding myself is that it’s not surprising, either — it just needs to be addressed, just as it does in any liberation movement. That’s what I’m here to fight for — the right for *all* of us to live our lives in ways that we want, free of oppression.

Quick update

I’ve been slow on posting for the past month because reasons, but here’s some things that I’m working on:

– Origins of ABA and its relation to LGBT conversion therapy

– The realities of being autistic in the U.S. school system

– The lack of diagnosis and subsequent public awareness of autistic women and people of color

– Shared realities and differences between the HSP and Autistic communities

– Lived experiences and realities of undiagnosed and diagnosis-suppressed autistics

There’s a bunch of content up there already, though. Feel free to have a look. 🙂 Thanks!

Autism and Consent

This is a directly worded, very concise post.

https://kirstenlindsmith.wordpress.com/2018/01/16/autism-and-consent/

The only thing I’d add is that while asserting that autistic people can’t understand non-consent is ableist (ridiculously, patently so), what can be difficult is parsing allistic social cues, which are always all over the place, but they’re *really, really* all over the place when it comes to intimacy.

The solution remains the same, though: ask. Always fucking ask.

If that’s still hard to grasp: *all* of the social norms around that (both good and bad) were most likely invented by allistics, over *centuries*, and were almost entirely invented by cishet men regardless, with typically *NO* input from women.

Even queer social norms have some of that BS as well. At the least.

So unless you relish trusting cishet allistic fuckshit that excludes women, and hoping for the best (which won’t happen): ask.

Also, *DO NOT rely on pick up books!* Here’s why.

https://kirstenlindsmith.wordpress.com/2014/02/21/clueless-autism-and-the-pua-community/

Shinylander: only the most high functioning shall survive

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