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12:23am
August 4, 2015
History of autism diagnosis and marginalized people. (Original post removed because the author was uncomfortable with being reblogged. They didn’t specifically ask me to delete my original reply to them, but I did, because I don’t want to send people back to their inbox inadvertently.)
So I’m removing direct quotes from their original post, and I’m just leaving in the information I gave out because that information is still relevant to understanding a bit more nuance than a lot of people know to the history of autism diagnoses.
So here goes:
I agree with your main point. It would be hard not to, I’m autistic,
AFAB, and genderless, among other things, so I’ve seen how these things
play out. But at the same time, you make some statements as absolutes
that I want to clarify because they’re not actually true as absolutes,
only as generalities. So I just want to add some… detail… I guess
you could call it.
[deleted quote about autism only being diagnosed in white men]
I
was diagnosed in 1995, at the age of 14, the diagnosis was reiterated
several times over the years, and I’m white but AFAB/genderless. I was
re-diagnosed in 1999, at the age of 18. I was not seeking a diagnosis
when I was originally diagnosed.
However, at the same time, I
was certainly diagnosed later than I should have been. These days, I
would have been diagnosed at the age of 15 months, at the latest, as
that’s when I stopped speaking. But that happened in 1981, and the
doctor my mom saw about it, told her the standard line for “regressive
autism” at the time, which was “it’s probably your fault, you’re letting
her be lazy and not making her need to talk”. Which is
ridiculous. I also should’ve been diagnosed when the preschool called
in my mother to tell her I was playing alone and shrieking when other
kids came near me, or when I was first referred to a therapist at the
age of seven, and multiple other times I was referred to mental health
professionals or schools brought up what was “wrong” with me.
However,
the diagnosis didn’t happen, and I can believe some of it was because
of the cis white male thing. Other parts of it were because the
definition of autism was different in 1980 than in 1987, and different
in 1987 than it was in 1995. And every time the DSM gets updated, it
can take over a decade – with some stragglers, even more than two
decades – for everyone to catch up. So people look at the change in
1987 and say that instantly everyone should’ve been diagnosed,
but that’s not how it works. I encountered a doctor in 1999 who said
that autistic people couldn’t interact in any way shape or form – a
view of autism that had officially left the DSM in 1987. And there’s
still doctors who think that, which dates back to the 1980 definition(1).
There was also another factor you didn’t talk about: An autistic disorder diagnosis, in the nineties, was considered almost like a death sentence. Insurance would give up and want to institutionalize you rather than pay for “treatments” and “therapies” and stuff. And many shrinks recognized this, and would take people who clearly and unambiguously fit the criteria for Autistic Disorder, and diagnose us with PDDNOS or Asperger’s. That’s how I got a PDDNOS diagnosis: My mom was told I was ‘autistic’ and an ‘idiot savant’ – out loud – but on paper it was PDDNOS/atypical autism, until I was old enough that the insurance thing wasn’t a threat anymore. Then it was changed – by the same shrink who originally diagnosed PDDNOS/atypical autism on paper – to autistic disorder, when I turned 18 or so.
The book Unstrange Minds gets into the way that diagnostic weirdness happened to the author’s daughter, who was diagnosed in roughly the same time period I was diagnosed, and was also told she fit full criteria for Autistic Disorder but would get diagnosed with PDDNOS instead because they didn’t want a label that would hurt her chances of getting help in school and the like. Saying Autistic Disorder was seen almost as like writing someone off. You just didn’t do it if you could help it. Unfortunately that has made it hard for some people who are products of that time, to get services when the services depend on an Autistic Disorder diagnosis.
Back to the statements you’ve made. It’s true that it’s harder for marginalized people of all kinds to get diagnosed even still, and that this was even more true in the nineties and before. Those of us who did get diagnosed back then got lucky. That’s how I see it.
But I also know what I saw when I went to a special ed high school. It had people mostly with a combination of DD and psych labels. I was in a classroom that was fairly mixed diagnosis-wise, but there were two classrooms that were all autistic people, most of whom were considered nonverbal (whether they were or not). And then a few of us scattered through the other classrooms.
So anyway… of the autistic people that I was aware of, in that school, the majority of them were people of color. The majority were also male, or presumed male anyway (most would not be able to tell you their actual gender identity regardless of what it was, or wasn’t). I know that people of color have more trouble getting diagnosed (and more likelihood of getting diagnosed with things like conduct disorder or ADHD or intellectual disability or psychosis) but in our school at least, the majority of autistic people were not white, and that means that there were plenty of people in the eighties and nineties who were getting diagnosed despite being people of color.
But definitely it was overwhelmingly (presumed) boys who had diagnoses at that school. There were very few autistic girls there.
[deleted quote about how nobody ever looked for autism in PoC or anyone other than white men]
Again, they didn’t look for it enough in people of color, but they did in fact look for it in people other than white cis men. They just didn’t look enough. I know that sounds like a minor difference, but I don’t want people getting the idea that people like me or others I know were never diagnosed until the 2000s. Because I was diagnosed in 1995, and I’m AFAB/genderless, which means someone somewhere was looking for autism. Especially since I wasn’t seeking an autism diagnosis when I got diagnosed, so they had to have seen it in me – they had no reason to be specifically looking for autism, given that I was there for suicide.
I
know it probably looks like I’m trying to argue with you. I’m not. I’m
actually just trying to make sure that other people know that your
statements, while generally accurate, aren’t literally
accurate. (Including the one that starts with “literally”.) Because a
lot of autistic people do take things literally. So I wanted to let
people know that it wasn’t like the only people to get diagnosed until recently were white cis men. It’s just that they were the majority
of people who got diagnosed until recently, and still are a majority.
I’m white, not cis, and not male or AMAB, and I was diagnosed in the
nineties, and so were other people I know, so it happened. Just not
often enough.
Other than that I totally agree with your post.
It’s harder to write a lot about “Yes I agree with this” than to point
out where I disagree, so that’s why there’s a lot more disagreement in
this response than agreement. But the actual levels of agreement
and disagreement, are that I agree with nearly everything you’re
saying, but I disagree with some of the sweeping statements you make in
one area, and I wanted people to know that reality is more complicated
than that. In case they weren’t around for the nineties or eighties.
Footnotes below cut.
8 notes
5:49pm
August 3, 2015
➸ Why I'm angry
So little has changed in some ways… here’s a 15-year-old article with a similar title (written by Laura Tisoncik, the first person to make an exclusively political website for autistic people, just to give you a bit of autistic history context here):
I’ll copy the entire post here as a quote, so you don’t have to click through if you don’t want to:
SPOILER: The following contains graphic, PTSD provoking descriptions of the use of restraints.
The following is from an e-mail exchange with someone from my state Autism Society (with slight revisions for improved clarity).
On Mon, 27 Mar 2000, you wrote:
> Hi Laura
>
> It sounds like that you had a bad couple of weeks? Can I help with anything?I doubt it, given that the issue is systemic and not personal, but you might get ranted at.
How do I put the pattern of things into words? About a year ago I founded a small fund for high functioning autistic adults (international, based in London, at least for the moment) with initial financing out of ad revenues from a website (thereby accomplishing as an autistic SSI recipient what no government, corporate philanthropist, autism society, or anything else has ever found themselves capable of or interested in…).
That means our tiny little project gets to field all sorts of crises… the HFA woman in Montreal whose mother (her only source of care) just died and who has nothing in the house left to eat except coffee grounds, the steady stream of abandoned aspie teens on the streets (we do a land office business trying to rescue at a distance aspie and HFA teens who’ve been thrown out by their parents, often after years of physical, psychological, and and sexual abuse– I have at this point precisely no patience with the line of crap that goes “parents have a right to decide what’s best for their child”. Nobody achieves sainthood by having an autistic kid, and plenty of parents have anything but the best interests of their kids at heart), the jobless adults that end up on the streets, etc.
It means our little project gets to do things like dial halfway around the world to an autism society in a small city in Australia to see if we could get an advocate– mind you, not money, not housing, not treatment, just one scrawny little advocate to help her fill out some forms– for a badly abused and abandoned teen, and getting back a reply, after a long delay, that they couldn’t provide an advocate (they’re in the business of serving parents, not autistics, after all) but if our homeless and hungry teen who can’t even use a bus could just travel 1000 miles to the nearest big city, they knew of a psychiatrist who might be able to see her, at $100/appointment.
As an IRC channel manager I get to see other things, too. I get to see the carnage wrought by years of “help”– not just in people my age, who were supposedly misdiagnosed and mistreated, but even in young teens. Ever want to clear out a room full of autistics? Start discussing restraints. But don’t do it unless you enjoy watching a lot of people have PTSD flashbacks. If you think this was all done for our own good, think again. I still have scars on my body, 30 years on, from having been beaten by hospital staff while restrained and drugged to the point where I was unable to sit up for three days. A friend of mine– a 19 year old, so this was not back in the Bad Old Days– tells stories of being restrained face-down, and the staff watching and laughing as she began to suffocate. And if you go peruse the Oasis web board online right now, you can read about a mother upset because her 16 year old aspie son was locked 4 days in a hospital “quiet room” for refusing medication. No, she wasn’t upset at the hospital, staff or doctors– she was upset at her son!
Maybe from your naive vantage point you can imagine those “quiet rooms” are quiet, or at least comfortable, or at least safe. They are none of the above. The number of people who die in them is frightening.
I need to interrupt my rant here with an illustration. I started to type that line about “the number of people who die” thinking “statistics”. About halfway though I suddenly remembered something I hadn’t remembered for years– that someone did die in restraints on one of the occasions I was locked up, about a week after I had been in that same quiet room.
Maybe you don’t know (because the “experts” don’t find it interesting enough to document their own damage) that the apparent rate of PTSD approaches 100% among autistics, and the number of autistics who’ve developed multiple personalities is noteworthy. If the doctors didn’t wound us badly enough, school did– I know autistics in their thirties who have recurring nightmares about school bullying. Of course when we tried as best we could to defend ourselves, we were “aggressive”; yet somehow causing lifelong emotional scars was not “aggressive”, or at least not as inconvenient to the schools.
Maybe you also don’t know that occasionally some of the online autistics brave the flashbacks to go to the parent-oriented message boards to try to warn some of these parents about the damage that is happening. My 19 year old friend did just that on the Oasis message board the other week. She told a few of her stories, to try to save some of the kids from what she had been through. The response she got? One parent told her “That’s a parent’s worst nightmare”, then went on to completely dismiss everything my friend said.
Do you see the problem here? That’s a parent’s worst nightmare?!? Who exactly did she think nearly died on more than one occasion? Who do you think lives with the aftermath every day of her life??? I can tell you, it isn’t my friend’s mother that had those nightmares, and still has nightmares.
A few other parents criticized what she had to say, and a few questioned her motives. Then they rolled right on, leaving my friend crippled by flashbacks for the next day and a half. You know, it is not a fun thing to spend a couple of days giving comfort on the phone long distance with someone who thinks she’s suffocating tied to a table somewhere, when you yourself are fighting off cold sweats and panic. It’s even less fun when you realize that in a few years you might be on the same phone holding the same conversation, this time with the teen damaged by the parents and professionals my friend had tried to warn that day.
And you know what? I hate the autism establishment. I hate the parent-professional axis that rips people to shreds then drops them into oblivion when they hit adulthood. I hate anything and everything that pays lip service to autism services but with with all its resources couldn’t do what I could do with next to nothing. I hate autism societies that have no use or place for autistics except as an occasional token to perform as freak shows at conferences. I hate “child centered” organizations that leave adult children to eat coffee grounds when there are no more parents to serve. I hate a system that mourns for the purgatory of the parent but doesn’t even give a damn about the hell of the autistic. I hate all of this, and so very much more.
I know that not every parent is complicit in this –in fact my ally and partner in my projects is a mother of an 8 year old autistic boy in California– and I know not every professional carelessly or callously destroys lives, and I hear of the occasional autism organization that tries. But I have no illusion that the good guys are in the majority. Or that the bad guys aren’t pretending to wear the white hats.
I also have no illusion that the parent-professional axis will, as constituted, ever do a damned thing for adult autistics, or for that matter honestly put the interests of child autistics before their own personal interests, given that they don’t seem to think we have any part to play in what they decide to do to us. Services go to money, money goes to power, and power right now goes to professionals (insurance payments and research funds) and parents (money to help “autistic children”). There’s no more room in that for us.
In a few days I’m going to be incorporating the fund and the informal structures around it, and we’re going to be a shiny proper international organization dedicated to providing practical help to autistic adults. It would be nice if all it took was raising money and playing Santa Claus. I like to play Santa Claus.
But I know perfectly well that that won’t do. It’s going to take a revolution. It’s going to take overthrowing that axis of power that leaves us voiceless and serviceless and invisible. It’s going to take turning things round so that instead of parents and professionals concocting schemes and then looking around for a Token Autistic to perform a benediction over it, nothing happens without our meaningful input. Services go to money and money goes to power and I want power to go to autistics.
So the state conference might have been preferred a Vidkun Quisling, but in the last few weeks I’ve metamorphosized into Che Guevera. This doesn’t appear to be a passing phase. It’s merely gone from a teetering-on-the-uncontrollable rage to that ice cold determination that I’m glad is not happening outside of me because I wouldn’t want to be in the way of it.
So now I get to try to be a Token Autistic. I understand that another dimension of the Token Autistic phenomenon is that it is an attempt, however weak, to add autistic input. And I’m far too focused right now to have any use for randomly aimed rage. I’m quite sure I’m not going to say anything regrettable. But I’m equally sure I’ve got a message here, and woe be it to anyone who tries to marginalize adults.
Of course I could also be in weird scattered speech mode, say a few incomprehensible things not at all like what I’d intend to and make me wonder why I bother with vocal cords at all when I can actually express myself in writing but just flail at things in speech… oh well.
END RANT
FYI, I was the “19-year-old friend” anonymously described. The woman who wrote this has saved my life many times over both before and since writing this all that time ago.
Laura got a reputation as “always angry” for writing this, by the way. It’s kind of ironic because she’s actually someone who thinks that love is the answer to most political issues, but she got pigeonholed as an “angry activist” and nothing she said or did could remove that idea. She does get angry, we all do, she just doesn’t base her entire political philosophy on anger.
She is old enough to remember COINTELPRO and she says they’re the origin of the idea that you have to be constantly pissed off to be a good activist. They would infiltrate political organizations and try to rile everyone up and tell people they weren’t good enough activists if they weren’t constantly angry.
But at the same time, she’s got nothing against people getting pissed off when it’s appropriate, so don’t make any assumptions in the other direction either. I just thought I’d mention this because I’ve seen people read this and decide (in conjunction with the long-term legacy of COINTELPRO in activist communities, that most people don’t realize the history of) that they had to be angry all the time. And that’s not what she was saying. She was saying why she was angry at that moment, not that everyone has to be angry all the time to be an activist. There’s a difference.
10:31pm
August 2, 2015
We are people
When I see a picture of someone who looks like me, it’s usually illustrating a tragic or demeaning story.
Sometimes it’s a picture of a child, illustrating a story about how difficult life is for parents of autistic children. Or a story about how the child’s favorite thing got turned into therapy. With depressing bullying statistics.
Sometimes it’s a picture of an adult, illustrating a story about how difficult life is for parents of autistic children once their kids reach adulthood. Or a bleak story about unemployment statistics. Sometimes it’s a story about a special business or sheltered workshop for autistics that the parent is proud to say their child is involved with. With depressing unemployment statistics.
Sometimes it’s a story about how an autistic person has a special talent. Maybe they’re an artist. The story is always about how mysterious and beautifully tragic it is that autism sometimes gives people special abilities along with significant impairments. The story will not take them seriously as an artist. It will be a human interest story about autism, and no art experts will be quoted — but the headline will probably say “autism does not define him.”
This gets corrosive. It can make the world seem bleak and hopeless. It can be hard to remember that this isn’t an accurate way to describe us. That we are, in fact, more than that.
In real life, we’re people, and we do things. We do things besides be miserable or be inspiring. We have thoughts and attributes that are not convenient to the tragic plots of newspaper articles. We’re people. We do real things. And we matter.
I am not a tragic story; I am not an illustration. I am a real person. And so are you.
As someone autistic who’s been in the news multiple times I can say this is 100% true. Even with the best media people I dealt with, they generally had their own ideas about who I was and what mattered about me and what didn’t, and what story to tell about me.
11:29am
August 2, 2015
➸ The Myth of "Official": autism and self-diagnosis skeptics
I’m officially diagnosed, I once posted eight to ten different versions of my official diagnosis (PDDNOS, CNS disorder NOS (with detailed descriptions of autistic sensory and motor traits afterwards), autistic disorder, autistic catatonia, etc.) from over the years from the ages of 14 to 22ish, and I still get called a faker with alarming regularity. If official diagnosis meant anything to these people, they’d have respected mine more than they respect plenty of people who’ve done less to prove themselves than I have. The fact that they didn’t respect my official diagnosis, says everything. They only say this crap to manipulate people.
I also got accused of stupidly self-diagnosing for going in to see a doctor and saying “I think X may be going on”. Which was ultimately wrong, but he (and several after him) concurred that X probably was the problem.
That would usually be considered a totally fine and normal course of action if you were talking about something more value neutral, like high blood pressure or a broken arm.
But, when it’s something stigmatized which somebody else doesn’t want to hear? That can also be “self-diagnosis”, and it’s your own fault if you get abusive treatment and/or things just don’t work out well.
Funny how that works, with the moving goalposts.
I’ve noticed that too.
Also misdiagnosis gets seen differently depending on the diagnosis.
Like I’ve been called a liar for saying I was diagnosed with autism at the age of fourteen.
Why? Because my diagnosis was changed to schizophrenia (at least in the eyes of some of my doctors, not others) when I was fifteen, and when I was sixteen or seventeen I wrote something publicly about being diagnosed with schizophrenia and “wanting to work with autistic children” (read: I had an autistic friend and people told me this must mean I “should work with autistic children” and I was pretty echolalic still when I wrote that and yeah), and therefore I couldn’t possibly have been diagnosed with autism before that point, because if I had, I would have just said I was autistic.
And somehow, like, I wasn’t supposed to be confused. I wasn’t supposed to believe what doctors told me when they said I had been psychotic since infancy and schizophrenic since adolescence. Even though they not only told me that, but told me I would never get better until I began acting schizophrenic (if I didn’t say I heard voices I was told I was in denial, just as an example), and I was living 24/7 in an environment where these people had total control of my life. I was supposed to somehow know that you can’t be psychotic from infancy. I was supposed to somehow know that these people who had control over my life were reading everything they said about me and my family, almost verbatim, straight out of a book from the seventies by Frances Tustin about autism and childhood psychosis (most of the “childhood psychosis” she was talking about would now be considered autism, including regressive autism). And that these doctors themselves were throwbacks with an antiquated view of both autism and psychosis, antiquated even for the time period this was taking place in. I was supposed to know all this as I was going through it as a very confused autistic teenager with a lot of emotional problems due to long-term abuse of a number of kinds from a number of sources.
The fact that I believed my doctors at the time and said exactly about myself what my doctors told me to say about myself is now thrown back in my face as evidence that I’m a liar and that I must really never have been diagnosed with autism at all, or only diagnosed in adulthood.
Read that again.
I said everything my doctors told me to say.
I believed everything my doctors told me to believe.
I did everything my doctors told me to do.
To a fucking fault.
And the fact that I did that.
Gets thrown back in my face.
As evidence that I need to listen to doctors more and that I probably “self-diagnosed” (i.e. “didn’t listen to doctors”).
Also note the assumption that you can’t ever be misdiagnosed after a correct diagnosis.
[This gets seriously long after this point. Be warned.]
7:53am
August 2, 2015
Fluttershy’s dark side.
I talked in my post about animals, about the thing people do where they form an imaginary relationship with someone (often an animal, sometimes a human too) and then see themselves as “loving” and being “good with animals” and stuff, even if what they’re doing to the people in question is utterly horrifying.
I was incredibly pleasantly surprised to see this tackled on an episode of My Little Pony: Friendship is Magic. If you haven’t seen the show, Fluttershy is a pony who is generally depicted as sweet, timid, demure, and loving, and “good with animals”, and she has all sorts of animal friends and pets living in and around her house. Normally, on the show, her relationship with animals is depicted as 100% wonderful and loving and caring and perfect. So I was shocked, bowled over, and pleasantly surprised when one episode showed that the way she thinks about animals can actually have a dark side that is wholly unpleasant for the animals in question.
Mind you, I don’t actually dislike her character, and I actually mostly like her relationship with animals. Because most of the time she doesn’t cross the lines she crosses in that one episode. But when she does cross those lines, it doesn’t shy away from how awful it is for the animals. Which is amazing for a children’s show, especially one where her relationship with animals is normally idealized to the point it’s almost like Snow White singing with the birds and shit.
Unfortunately, the video itself has been taken off YouTube. However, I found a transcript I made of it years ago, so I’m going to post that. It includes descriptions of her actions, not just her words:
FIRST SCENE
Fluttershy singing:
At the gala
In the garden
I am going to see them all
All the creatures
I’ll befriend them at the galaAll the birdies
And the critters
They will love me big and small
We’ll become good friends forever
Right here at the galaEveryone singing:
Your dreams will come true
Right here at the galaSECOND SCENE:
Fluttershy:
Oh my, a meadowlark!
[Someone else whistles a few notes]
[Fluttershy gasps]
Fluttershy: I think she’s calling to me, it’s exactly what I wished for!
[Fluttershy sings the same notes]
[Someone else whistles the same notes]
[Fluttershy whistles the same tune a little lower in pitch]
[Someone else whistles the original notes]
Fluttershy: My little meadowlark is right around this bend!
[Around the corner is a brown pony with a tall hat]
[Brown pony whistles the same notes]
Fluttershy: Was that you?
Brown pony: Yep! I love whistling while I work.
[Brown pony whistles the same notes]
Fluttershy (sounding upset): Oh. Yes. Well, excuse me…
Fluttershy: Oh! I see a [toco!?] toucan, and a spider monkey. And oh! Is that a wallawoo?
[The animals rush away in an instant]
Fluttershy: Oh Fluttershy, you’re such a loudmouth.
THIRD SCENE:
Fluttershy has set up a drop trap with a carrot as bait.
Fluttershy: I just have to be more bold like Twilight says.
[Fluttershy backs away from the trap, pulling the very long rope with her towards the exit to the garden.]
Fluttershy (to animals, in an odd voice): I’m so sorry to have scared you, my friends. You can all come out!
[Fluttershy quickly ducks behind a bush with the rope still in her teeth]
[Some sounds are heard, and Fluttershy pulls the rope]
Fluttershy: Gotcha!
Fluttershy: It’s okay, I promise not to hurt you, I just want to be your —
[The brown horse from before is munching on the carrot]
Fluttershy: …friend?!
Brown horse: Mmm. Sounds good to me!
FOURTH SCENE:
[This whole scene is set to music someone else is singing, similar to the hokey pokey.]
LYRICS: You stomp your whole self in
You stomp your whole self out
You stomp your whole self in
And you stomp yourself about[This whole time, Fluttershy is throwing herself at various animals, who run away before she can touch them and can be seen hiding in trees and bushes.]
LYRICS: You do the pony pokey and you give a little shout
Fluttershy: COME OUT!!!!
LYRICS: That’s what I’m talking about
Fluttershy: I’ll catch you yet my pretties. Oh yes. As soon as one of you little birds, or monkeys, or bears touches this net, you’ll be mine! MINE!!! [Evil, shrieking laughter.]
Fluttershy: What??
[Fluttershy trips her own trap, which pulls her up into a net. A rabbit comes up to investigate.]
FIFTH SCENE:
[This is inside some sort of huge room at the gala.]
Twilight: Well… it can’t get any worse.
[The entire building starts rumbling and shaking. People look really confused.]
[The doors burst open and a huge bunch of animals from the garden come rushing in, terrified and trying to get away from Fluttershy]
[Fluttershy appears in the doorway after all the animals have come in. She looks worn out and angry.]
Fluttershy (words increasing in volume and anger): You’re… going to LOVE ME!!!!!!!!!
[The various animals run away.]
Just… wow. (Lots and lots more discussion behind cut, some of it redundant from my last post on this subject, some of it new.)
11:20am
July 31, 2015
Can we talk about how autism discourse often revolves around throwing people with intellectual disabilities (and other cognitive stuff) under the bus? Like I’m reading something and it involves literally saying “well at least autistic people can actually be really smart and not have cognitive/intellectual disabilities!”
First, autism and intellectual disability are not mutually exclusive.Second, intellectual disability does not preclude meaningful lives. Intellectual disability does not mean people cannot have input on their own lives and choices.
Stop talking about it like autism is higher up on a hierarchical scale and that’s why autistic people are worth something.
People are worth something because they are people.
This gets especially intense around autistic people who use FC.
I got my head practically bitten off by a facilitator who told me that “motor planning problems aren’t cognitive impairments” and I was like “actually yes they are, they’re where thinking meets movement, that’s cognitive“. But he didn’t get it, didn’t want o get it, he just wanted to keep pretending (and passing along to his clients) this idea that autistic people’s cognitive impairments are just a myth, that autism is just almost like a form of cerebral palsy where your body doesn’t move how you want it to but you think just like everyone else.
Physical disability rights people are no better. I know someone who did a research project on disability pride in the mainstream disability rights movement, and she was shocked to find that most of it boiled down to “at least we’re not retarded”, sometimes in exactly those words.
And there are segments of the DD movement where autistic people are put at the bottom of the barrel.
From what I can tell, generally at the bottom are DD people of all kinds (including autistic people but not limited to us), and people with psychiatric disabilities, and different ones come out on top in different situations, often with people shifting around depending on the situation.
But yeah been speaking out against cognitive ableism in autistic communities since forever because it’s been a thing since forever, and a much worse thing than just about anyone is willing to acknowledge.
1:34am
July 31, 2015
one time in sixth grade i did my math homework and then because i was excited that i had grasped the lesson so well, i did the next day’s homework too
the next day in class i told my teacher, and she looked constipated for a second, and then said dismissively, “well, then you’re not very good at following directions, are you.”
#I identify strongly with this#I got reprimanded on multiple ocasions for reading ahead and/or already having knowledge
__
Cause tags are truth. Maaan ,that one time a teacher stole my encyclopedia cause it proved her wrong.
when I was eight and in public school, we could do a report based on any historical character who had a book about them in the school library.
I picked Harriet Tubman because Harriet Tubman, and I wrote about how her master had thrown an anvil at her head, leaving her with a permanent dent in her forehead. I know that the anvil part was definitely in the school library book.
My teacher circled the word “anvil” and took off points.
“I HAVE SPELLED ANVIL CORRECTLY,” I roared in tiny confrontation.
“No,” she said, and it transpired that she didn’t know or care that “anvil” is a word or that “anvils” are a thing.
And so despite my helpful attempts to explain what anvils were, including references to blacksmiths and the Roadrunner, I had points taken off OH MY GOD.
YES, I AM STILL MAD ABOUT THIS TWENTY YEARS LATER.
FUCK YOU, LADY. YOU ARE DOUBTLESSLY DEAD BY NOW AND I HOPE YOU KNOW YOUR STUDENTS STILL HATE YOU.ANVILS ARE A THING.
By 7th grade I was pretending not to know words that I did if I didn’t want to hear something snide from a teacher about answering questions “in my own words.”
When people put their egos before your education, jfc
In first grade I picked up a book about bees and learned that bees keep their young in some parts of the honeycomb cells, so I enthusiastically told my teacher that. And he was like, “No.” And I kept arguing because look, I had the book right in front of me and I had JUST read it, and he started squeezing my shoulder and hissing through his teeth, because he could just not let me believe I was right about something he didn’t know. The book was in his own damn class, he could have read it.
I once had a French test where we had to translate French sentences into English.
Every time I wrote the word “no” in English, the French teacher (who spoke French as her first language) “corrected” it by writing “non” in a red pen and marking me wrong. Which turned out to be quite a bit of questions marked wrong, so that I got a fairly low grade on the test.
I wrote an explanation that in French it’s spelled non but in English it’s spelled no and that I did nothing wrong in spelling it no in the context of English.
I got in major trouble, was called out of class and had it explained to me that I was “condescending” and “rude” and “hostile” for explaining such a thing to a teacher, who should be an authority figure, and all sorts of other weird bullshit. They never paid any attention to the fact that she graded the test completely wrong, they made it all about me having a bad attitude. That was one of many times in my life where I got in trouble for not noticing and/or responding with subservience to social hierarchies. This response from authority figures has not stopped. They perceive hostility where none exists, just for not showing deference.
4:44pm
July 30, 2015
➸ The Myth of "Official": autism and self-diagnosis skeptics
I’m officially diagnosed, I once posted eight to ten different versions of my official diagnosis (PDDNOS, CNS disorder NOS (with detailed descriptions of autistic sensory and motor traits afterwards), autistic disorder, autistic catatonia, etc.) from over the years from the ages of 14 to 22ish, and I still get called a faker with alarming regularity. If official diagnosis meant anything to these people, they’d have respected mine more than they respect plenty of people who’ve done less to prove themselves than I have. The fact that they didn’t respect my official diagnosis, says everything. They only say this crap to manipulate people.
10:29pm
July 26, 2015
I keep seeing people labeling Autism Speaks as a “hate organization” and it’s sexist because they’re promoting Autism Awareness with the color blue (and not pink), but it has NOTHING to do with gender oppression. It’s about supporting and understanding those with Autism and spreading AWARENESS.
Some of you need to do your research before jumping to conclusions. Stop believing every thing you read on the internet.You’re the one that needs to wake up and listen to the people Autism Speaks is oppressing all the time.
Autism Speaks wants to DESTROY AUTISTIC PEOPLE. They cover it up with flowery language but that’s their aim.
They don’t have a single autistic person in any positions in that organization, they they claim to know what we need and try to speak for us. You don’t see gay rights organizations being run by straight people who want to cure homosexuality? Well that’s what Autism Speaks is. They hate autism and they dehumanize, exploit and misrepresent autistic people for their own financial gain.
THAT is why autistic people are against Autism Speaks.
We’re not random people trolling them for lulz. We are people trying to be heard over a juggernaut organization bent on oppressing us.
Seeing things lit up blue is a painful reminder that I’m seen as less and people want a giant portion of my identity removed in order to be “acceptable” to society.
Even nonverbal people are happy with how they are and don’t want to change.
Much of today’s negative rhetoric, stigma and stereotypes about autism come from Autism Speaks.Reblogging myself to say the person who made the post I responded to personally messaged me to apologize and say the post was a long time ago and they’ve learned a lot since then.
Fellow autistic people, this is proof that we’re not speaking into an echo chamber. For every twenty people who ignore us, there is still one who listens. Every ONE who listens to us is so important and we should celebrate for them. Because one person here and one person there adds up over time! It’s still worth it!Last night my roommate asked about me being autistic and she had a lot of questions and said a few ableist things (nothing too terrible, she was very open to learn) but when A$ came up, she immediately knew what was bad about it, and talked about the things she had heard. So people are learning. It’s becoming more common knowledge. We’re getting there.
Totally against Autism Speaks here, although I feel like they get too much attention sometimes. Like people notice they’re bad but don’t notice the other organizations that came before them (one of which merged with them) to make things this way, many people even think they originated the puzzle thing and they totally didn’t. It’s the autistic community with its damn five-year=long memory again.
But about “Even nonverbal people are happy with how they are and don’t want to change.“
That’s technically true in a sense – there are nonverbal people who are happy with how we are and don’t want to change.
But. Several problems with… kind of how that sort of statement works in a lot of ways.
Nonverbal people is not a kind of autistic person. Really there’s like… everything from 2% verbal to 98% verbal and a person can move around on that scale throughout their life. It’s rare to find someone who’s 0% verbal, and most people considered nonverbal (or functionally nonverbal) can speak some of the time somewhat, whether our speech is communicative or not.
On the other hand I do like to point out that lots of nonspeaking autistic people do want to remain autistic, just because some people assume we don’t. (I’m someone who – and this is an oversimplifcation still – went from at my best, 70-80% verbal to 2-5% verbal over the course of my lifetime, just so nobody gets ideas about my life story that aren’t true and then blames me for calling myself nonspeaking.) People always bring up nonspeaking autistic people when they want to talk about autistic people who would “obviously” want a cure.
But at the same time as I like to point out that yes, many of us don’t want a cure.
I also don’t like singling out nonspeaking people as if we’re a special group of autistic people. Because we’re not. We’re just autistic people who are less than some arbitrary amount verbal. (It’s not just 0%, it can be anything from 2% to even 30% probably, depending on the context, but rarely does anyone mean just 0% verbal people when they say nonverbal.
Although I’ve sometimes seen a double-standard where parents will tell a nonverbal person that because they can talk on rare occasions or because they used to be able to talk or because they have nonfunctional echolalia then they’re “not really nonverbal”, and those exact same parents will post videos of their “nonverbal” kids talking. And not see any contradiction there. I wish I was joking but I’ve seen this over and over. “Nonverbal” kids talking in videos, some of whom people watching the videos literally don’t notice them talking because they’ve already assumed that (a) they’re nonverbal and (b) nonverbal means speech never comes out of your mouth.
Nonverbal means speech rarely comes out of your mouth, or that what speech does come out of your mouth is either noncommunicative or incomprehensible to those around you. Or presumed noncommunicative. There are ‘nonverbal’ people who speak words very well (in terms of, they think words and those same words come out their mouths) but they either talk in a rapid breathy high pitched voice that sounds like they’re saying nonsense to themselves, or they can only pronounce vowels so all their words sound like squealing to people who don’t know them, or other things like that. And they’re considered nonverbal because people either don’t notice or don’t understand their speech or don’t consider it communicative even if it is.
So nonverbal is a weird category and I’ve explained that to death by now and it wasn’t even my main point about not liking what was said.
While the sentence is technically correct, it could give the impression that all nonverbal people feel this way. Which is totally untrue.
There are lots of nonverbal people who want to be cured. There are also lots of verbal people who want to be cured. And lots of semiverbal people who want to be cured. And basically, verbal skills are not what determines who wants to be cured.
Which I know is part of the point someone was trying to make by saying that there are nonverbal people who don’t want a cure.
But “there are nonverbal people who don’t want a cure” is a much clearer way of saying it than “even nonverbal people don’t want a cure”.
Of course a lot of online autistic people only interact with autistic people who don’t want a cure, and therefore get a really skewed view of how many autistic people don’t want a cure. It’s true that autistic people probably as a whole want a cure less than many other disability groups. But there’s still lots and lots and lots of autistic people who are not happy as they are, or who do want a cure, or both. And that’s okay. It shouldn’t be threatening to anyone, and it shouldn’t legitimize anything that Autism Speaks says or does supposedly on our behalf.
I liked the way an autistic person put it way back in the year 2000. A group of parents was having a rally about autistic people, without inviting any of us. (1) And one of the big purposes of the rally was to find a cure, and a lot of autistic people had a problem with this.
And in an email to one of the founders of the rally (in trying to explain to this woman what she should’ve done instead of steamroller over every autistic person who disagreed with her and then play the victim when we fought back), an autistic woman put it like this:
“You could start to compromise by recognizing that “cure” is so offensive to many autistics that it destroys any possibility of cooperation. You would need to clearly and unambiguously remove “cure” and “research” entirely from your agenda, leaving the issue a matter of personal opinion.“
Mind you – in this context, “research” meant “research into eradicating autistic people,” it did not mean “research in general” because I know the author of that letter and I know she supports genuine autism research done from a truly scientific perspective. She just knows that the research these parents were promoting was eradication and prevention research, and that this angered many autistic people.
But the part I agree with the most is “leaving the issue a matter of personal opinion”.
Because it is a matter of personal opinion. Some autistic people desperately want a cure and some don’t want one at all and some are somewhere in between. Probably most are somewhere in between. Certainly most of us have things about being autistic that we don’t like, even if we’re generally happy as we are. And that’s important too. But places like Aut$peaks don’t leave it up to personal opinion, they push a cure-dominated agenda in a way that’s damaging both to those of us who want a cure and those of us who don’t. They don’t really speak for any of us, whether we seem to agree with their agenda on the surface, or not. Even the autistic guy they hired for their advisory board (who was far from some kind of autism radical at the time and held very condescending views towards many other autistic people) quit when he realized he had no actual power to effect change within the organization. That says a lot about them, that they couldn’t even keep a guy who thought at first he basically agreed with them.
But yeah I think that autistic people sometimes get really hung up on the idea that all autistic people should want to remain autistic, or that we all really do want to remain autistic deep down unless we’ve been brainwashed or something. But that’s not true.
But it’s also not true that whether you want a cure is about how autistic you are. Every kind of autistic person – both real categories of autism and fictional ones (most of the official ones seem fictional to me) – has people who don’t want a cure and people who do. I’ve talked to people with Asperger diagnoses who hold jobs and are married and have a big social life who still want to be cured, and I’ve talked to people who have never spoken in their lives and only learned to type at a very late age who wanted nothing to do with a cure and find the entire idea offensive. Cure isn’t about who you are, it’s about how you think of who you are. And that’s a very important thing to get across. Because I don’t want to be cured, but there could be a person identical to me in every autism-related respect who desperately wants a cure. Acting like the desire for a cure is tied to what kind of autism you have, makes it sound as if we can’t even make decisions, like autism determines what we think of ourselves, and that’s a horrifying idea that I barely want to contemplate. I hate when people look at me and decide what I must think of myself based on what part of autism they classify me as having. That’s essentially telling me that I don’t have a mind, I just have an ‘autism’ that tells me what to think and dictates my every opinion. Which is a disgusting way to think about autistic people of any kind, real or imaginary.
Which I think is why the person above pointed out there’s nonverbal people who want cures. But the way they pointed it out, just made me want to clarify this huge bunch of things. Because it just… it’s not that simple.
But regardless of anything else, Autism Speaks is a horrible organization and they don’t even speak for most autistic people who want a cure. They can’t even hang onto autistic people who feel like they share their values more or less. And that says everything.
3:07pm
July 23, 2015
Do other people find certain words just randomly irritating?
I don’t mean like words that bite my brain, which is a term I came up with for words that, instead of conveying meaning to me, just create a little explosion in my head that hurts and that makes it impossible for me to understand the word easily even if I technically know what it means sort of. Those words, there’s at least a reason they bug me. (For instance: heteronormative. I kind of know what it’s supposed to mean, but just looking at it creates a blank space in my head that then explodes and hurts my brain, no matter how many times I see it I’m never desensitized. No, this doesn’t mean stop using it. Please use whatever words you want to. I know how hard it is to come up with new words when you feel like people are restricting your use of language, so I don’t want to do that to anyone.)
No, I’m talking about words like “mouthfeel”. I know what mouthfeel means, but the word bugs the shit out of me and there’s really no good reason for it at all. (I don’t normally talk about things like this because I don’t want people to stop using words on my account. But I had to come up with an example, and that’s a good one.)
It reminds me of misophonia in a way – it’s the same irritated anger for no good reason. It just isn’t related to a sound, specifically, but the word itself.
2:20pm
July 23, 2015
Everything is connected, in weird ways.
And I’ve always been good at finding those connections, instinctively, and finding connections most people don’t find, and therefore interacting with the world in a very unusual way from the moment I entered it.
And I knew I’d gotten some of this from my mother, who sometimes does similar things. But I didn’t realize I’d gotten a lot of it from my father as well. I didn’t even begin to suspect, until he was dying and began to say things that indicated he was well capable of seeing these odd connections between things himself.
But after he died, he had my mom send me a lot of his things. Shirts, rocks, a backpack, hats, beard clippings.
And I was able to see him more clearly than ever by looking at the way all these objects connected with each other, all centering on who he was.
And I was able to see that he was able to see such connections between objects himself. And I was able to see that he spoke Rock, and Tree, and Mountain, and lots of other languages I speak, and that he’d hinted at being able to speak before, but not so strongly as he did after he died.
And through all these things I feel like I can connect with what he is now, which is… something that reminds me of Gandalf, after he’d fought the Balrog and won and been taken out of the world and put back into it again in a new form. I don’t understand it, I wouldn’t have believed it before I saw it, and I’m not the only one to have noticed it. (I tend to try to confirm perceptions like this by asking specific questions of other people, because it’s too easy to fall prey to wishful thinking if you’re the only one perceiving something.)
I feel like I know him better now, and am constantly connected with him now, and his love is always there, and my love is always there for him, and mourning isn’t as bad as people made it out to be, it’s actually been quite beautiful sometimes. And yet I fear to say that, because I don’t want to sound like everyone ought to mourn the way I mourn, or everyone ought to be as happy as I am, or something like that. I don’t mean that at all. I’ve been told that people like me were originally thought to be in some kind of denial because we didn’t “mourn properly”, and then later they realized it’s actually one of many very healthy ways of handling grief and not a dysfunction at all. (And apparently it’s often connected to having strong spiritual or religious convictions that help you put death in context.)
I feel like the hardest part was before he died, weirdly enough. My stress level was through the roof, and it only started leveling off after he died.
But towards the end, he was doing exactly what we’d talked about – trying to immerse himself in love, which is the only antidote to fear when death is involved. We all tried really hard to love each other as much as we could, no matter how stressed out we were. That was the one thing we could give to each other as he was dying. And he became incredibly good at perceiving love in others, as well as giving it. Towards the end he couldn’t talk well, so we just stared at each other through Skype, and I made purry cat noises at him. He once said that anything I had left to say to him, he could see in my eyes, so I didn’t need to type it all out. I still wrote him a letter towards the end. Writing that letter was hard, it really did feel like throwing a rock in a deep lake and walking away forever, knowing I’d never be around when the rock hit the bottom.
But then after he died… he went away for a few days, but then he was still around. I could feel him still being around, outside of time somewhere, in Gandalf mode. (I always did tell him he had Gandalf eyebrows. But in temperament he was more of a Radagast, I think. More connected with living things of all kinds.) I knew that everyone sort of exists outside of time in a way that can’t be destroyed, but I never understood what that could mean for after death until I saw it.
And people ask me questions about their loved ones sometimes when I talk about these things. I don’t know anything about anyone else’s loved ones. I barely understand how it worked for my father. I just know something happened, and he’s still here, but different, and that’s kind of amazing. I don’t care if anyone else believes me or not, it’s a personal thing. It just… is what it is, and I have no particular explanations or wisdom or anything about this. I’m just relieved that I can still continue a relationship with him, still continue getting to know him, including sides of himself he didn’t show as much when he was alive, but that shine really brightly after his death, now that he has nothing more to fear. And that love and absence of fear is amazing. I hope I die half as well as he did.
And they were right, grief is a form of love – whether it feels good or awful at the time, you can’t grieve without loving.
10:45pm
July 21, 2015
More Autism WTFness
“Autistic people are not capable of imitation.”
“Echolalia is an autistic trait.”
PICK ONE, seriously. But please not both!?
4:37pm
July 21, 2015
Omg WTF empathy research sounds like it’s often a sham
This same idiot researcher just said the way we Study empathy in human children is to instruct a family member to act distressed and see what the child does.
TO ACT DISTRESSED.
ACT.
That is not a genuine situation and does not necessarily test empathy in the way people would expect. Someone with really good empathy would not respond to feigned distress as if it was real. And someone who can’t spot feigned emotions but can spot real ones would be up a creek.
I once designed, on the spot, a way to research empathy in autistic children for real. One off the first things I told the researcher was that the tension and stress of the family member had to be genuine. It could not be acted or feigned. Autistic people are notorious among people who actually know us, for frequently seeing past the surface appearance and into the reality in ways many nonautistic people can’t do. I know an autistic woman who flunked an empathy test because she gave the actors real emotions instead of their acted ones. But the idea that anyone can see through surface appearances and essentially stage conventions is unheard of apparently.
Anyway the researcher I know did frustration experiments so she had software designed to stress people out. So you stress out the parent and test the galvanic skin response of the child. Which eliminates the need for any language skills on the part of the child. Add in control groups and everything else and you have a study that will probably show what the researcher had ignored parents saying until I asked her to reflect on it – their autistic children are more sensitive to tension in the air than any other family members.
The researcher had assumed the parents didn’t know what they were talking about because everyone knows autistic kids don’t show empathy. Just like her students thought the autistic kids in Autism Every Day were all nonverbal and did not interact and did not pick up body language and did not make eye contact and show joint attention… Until I took them through the video acne paused it every few seconds to show them how wrong they were. And these are supposedly experts.
Anyway she had better actually do that experiment one day because it would change the entire face off autism research if people started really testing us instead of setting us up to fail. Which is what relying on stage conventions, artificially created situations, language, and multitasking (expecting both reading body language and using language at once), does to us.
FFS I’ve taken one psych class in my life and have no science backgrounds and I can smell the bullishit in research well enough I’ve been publicly praised by actual researchers (including the then president of the Association for Psychological Science). So surely it can’t be that hard to do real science.
4:17pm
July 21, 2015
Okay I’m calling bullshit on this yawn contagion stuff.
I keep hearing that autistic people don’t show yawn contagion. I don’t know who decided that because lots of autistic people on every purported part of the spectrum do have it.
Secondly the idea that yawn contagion is just about empathy or synchronization socially. No. Reading about yawning makes me yawn just as much as seeing someone yawn. It’s not because I imagine someone yawning when I read about it either. It’s because anything that reminds me of yawning makes me yawn. That includes other people yawning but it also includes anything that reminds me of the topic of yawning. Anything at all.
Honestly so much of what passes for science in psychology is flagrant bullshit. And nobody notices.
*yawn*
5:39pm
July 19, 2015
Could anyone point me to any blogs/articles/essays on the problems of institutionalizing and forced drugging people for Monday?
(Besides all the articles on Ballastexistenz - I already know about those :D )
On Monday I might actually Do The Thing and it would be nice to have sources…
Feel free to re-blog this with links, or use my ask or submit.
Or use the ask box below?
Signal boosting and also thank you for remembering Ballastexistenz. It seems like sometimes lately I feel like I and most other “old school” bloggers from the autistic community are being slowly forgotten by people looking for this kind of information. (Ranting about this topic under cut, especially because it’s autistic community specific – skip if you don’t want to read that part.)