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1:50am August 4, 2015

madeofpatterns:

My friends are FRIENDS. Not people I’m in a socially valued role with so that I can gain access to the good things in life.

There’s a disturbing idea embedded in all of this, that is very similar to an idea embedded in a particular school of pop psychology.

I’ve run into some autistic people who decided to learn social skills by learning that particular school of pop psychology.  It invariably turns their view of socialization into something that seriously disturbs me.  (I’m sure the same is true of nonautistic people who buy into it, but I think autistic people may be more vulnerable to using such things as a way to learn social stuff explicitly.)

I’m talking about, specifically, transactional analysis.  It’s one of the most horribly cynical views of human interaction I have ever encountered.  And it has something deeply in common with the Social Role Valorization stuff you’re reacting to, although I can’t articulate what.

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*

12:37pm May 6, 2014

A note about NLD.

NLD is a catch-all term for learning disabilities that are not in verbal areas.

NLD is just as broad as “verbal learning disability” would be.   

NLD is not a guarantee that you have good verbal skills.

NLD is not a guarantee that you are bad at all nonverbal things equally.  

I was diagnosed with NLD as a teenager, and I have excellent nonverbal skills in some areas, and even a slightly higher performance than verbal IQ – but my performance subtests were both at the top and bottom of the range of the test.  Block design and matrix reasoning were relatively high, that weird thing where you have to copy the symbols was extremely low, just as an example.

Overall if I had to quantify verbal versus nonverbal skills, I’d say I have better nonverbal than verbal skills.  But in reality, what I have is some verbal and nonverbal skills that are extremely good, and some verbal and nonverbal skills that are so bad they qualify as learning disabilities.  So I was diagnosed with NLD on the basis of the specific nonverbal areas I’m bad at.  Just like I’m hyperlexic and that involves both good verbal skills in some areas and horrible verbal skills in other areas.

I’ve seen a lot of bullshit floating around about NLD recently, basically oversimplified stuff like “if you can draw well you don’t have NLD”.  I was professionally diagnosed with NLD when I was about 17, and I have won awards for my artwork since I was 12, had my photography used as an award given to other people the same year I was diagnosed with NLD, and been shown in galleries on multiple occasions.

Pretty much all autistic people have both verbal and nonverbal learning disabilities.  It’s part of being autistic.  Autistic people can also have verbal and nonverbal areas of strength at the same time as having verbal and nonverbal learning disabilities.  (Hell, so can nonautistic people.)  It’s extremely rare for someone to across the board be terrible at all verbal things and good at all verbal things, or vice-versa.  Generally people have strengths and weaknesses in both areas.

The reason the concept of NLD exists, is because people were extremely focused on verbal learning disabilities like dyslexia, while ignoring the fact that there were people whose learning disabilities were wholly or partly in nonverbal areas.  People focused especially on people where there was a big discrepancy between verbal and nonverbal skills, and who had problems with nonverbal skills across the board, because that’s the most clear-cut situation.  But it’s hardly the only situation.  Saying that people with NLD have to have great verbal skills and universally bad nonverbal skills is like saying that people with dyslexia can’t read at all and are great at spatial reasoning – it’s oversimplified in the extreme.  

Basically, try to imagine a world where there were lots of specific learning disabilities in nonverbal areas (and yes I know there are disabilities for some of these) – one for spatial reasoning, one for inability to draw, one for handwriting, one for math, one for social skills, one for understanding facial expressions and body language, one for etc.  And that there was no word for anything like dyslexia, hyperlexia, alexia, and all the verbal learning disabilities.

At that point someone would’ve created a term called Verbal Learning Disability. And it would cover every single learning disability that involved words, no matter how many there were and how unrelated to each other there were.  And people would assume that if you had one of these learning disabilities then you had to have all of them.  And they’d assume that if you had Verbal Learning Disability then you’d have to have great nonverbal skills.  And etc.

And that’s how people think about NLD today a lot of the time, and that’s why it doesn’t work to think of it this way.

9:26pm December 7, 2013

realsocialskills:

ahandsomestark asked realsocialskills:
I’m just curious why is an autism expert the last person you’d go to.
Because experts are taught things like this:
  • Autistic people are mind-blind and can’t understand emotions
  • And need intense social skills training, or
  • Don’t quite reach adulthood ever, or
  • Should be steered into STEM majors, or
  • Need intense ABA in order to make them look normal, or
  • All think in pictures, or
  • Any number of other stereotypes
  • Many of them also do things like routinely prescribe anti-psychotics to autistic people

That’s pretty much dealbreaking in terms of trusting them. Among other reasons. Anyone else want to weigh in?

All you have to do in order to become an autism expert is get a degree and form a theory about either what makes autistic people autistic, or how to make autistic people more normal. That’s it. You don’t even have to prove your theory.

And if you do actual “research”, it doesn’t have to be real research. It can be stuff with holes in it a mile wide, that is designed to prove your theory and nothing else.

You don’t actually have to know a single thing about actual autistic people. If you have to know anything, all you have to know is things that other experts say about autistic people. Most so-called expertise in autism consists of memorizing bullshit that experts have come up with to explain behavior that they don’t understand.

It’s quite rare to find an expert who gets it, even about the simple things. I’ve met a few, but they’re few and far between.

One expert I met did not believe that sensory issues were a real thing. She literally didn’t believe that overload was real. She believed that meltdowns and shutdowns were manipulative behavior done by autistic people to avoid doing what we’re told. She did not understand basic, basic things, like that an autistic person might have trouble holding a conversation with more than one person at once. It became obvious over only a short period of time that she understood virtually nothing of what goes on in autistic people’s heads.

She also refused to speak to a cognitive interpreter I brought along, even (hell, especially) when I became completely unable to communicate in words of any form whatsoever. (At that point in time, I could speak some of the time, type some of the time, and do neither some of the time.) She wanted me to communicate and when I couldn’t communicate in a way she understood, she blamed me for it.

To her, what goes on in our heads didn’t even matter. Her goal was to control autistic people’s behavior. She was very famous for being good at controlling autistic people’s behavior.
I’ve noticed that it’s the most manipulative staff types who insist on accusing disabled people of manipulation. She was no exception. Her entire specialty was manipulating autistic people. Anything that prevented her from manipulating us, was what she called manipulation on our parts. She never directly accused me of manipulation, but I read one of her books later on and it turned out that at the times she got the maddest at me (during shutdowns and the like), I was doing things that she classified in her book as manipulative behavior: Shutdowns, meltdowns, temporary loss of specific skills, etc.

She is not unusual among autism experts.

I used to know a little boy who was sent to an extremely well-renowned autism expert. Very famous, has written books on autism. After she put him on one of her behavior programs, he lost all of his previous toilet training out of sheer terror. He also developed post-traumatic stress disorder symptoms from her behavior programs.

I’ve read her books, and she basically knows nothing about autism. She knows a lot of statistics, but she doesn’t put them together in a useful way. She simply uses them to reinforce stereotypes about autistic people. She can rattle off all the “received wisdom” about what makes autistic people autistic, but she doesn’t know the first thing about what makes our minds work.

And again, she doesn’t care. She doesn’t give a shit. All that matters to her is manipulating autistic people. There’s a lot of that going around. She also said that the boy in question would never learn to talk, never do this and that and the other thing, and that he had a severe intellectual disability. He learned to talk and he went to gifted classes.

Never trust an autism expert who tells you what your child will never do. That particular expert is famous for giving autistic children the most bleak prognosis she can possibly come up with (one that actually fits a small minority of autistic people), and for saying things like that autistic children will never love their parents. (Which is exceedingly rare among autistic people, and when it happens it’s not usually because of autism.) She considers this “straight talk” and believes that to do anything else would give parents “false hope”. So she opts for false despair instead.

I could go on.

And on.

And on.

Autism experts are, for the most part, not actually experts in anything directly related to autism. Generally all that they are experts in is manipulation or in other experts’ ideas about autism. That’s different from being an actual expert in autism.

Even autism experts who are actual experts about autism can get a lot of things wrong, they’re just people who actually get it about some facet of autism. And that’s some facet, they don’t necessarily get it about all facets, and many times they focus only on one part of autism and ignore others.
Among those with an actual clue about autism, I would name Martha Leary, Morton Gernsbacher, Laurent Mottron, Michelle Dawson, and maybe Anne Donnellan. This doesn’t mean an endorsement about everything they say or do. It just means that they understand something major about autism, which most experts do not.
You’ll often hear slogans like “parents are the real experts” or “autistic people are the real experts”. Those things are both true and not true.

Most autistic people are at minimum fairly expert about our own personal experiences (most people in general are not as expert about our own experiences as we think we are, which is why I’m qualifying that). Some autistic people are experts on more than that, while others are not.

Temple Grandin is a good example of what happens when the average autistic person gets held up as an expert on all of autism. She’s done a great deal of analysis of her own personal experiences. For a long time, she simply did not go beyond her own personal experiences, at all. She would literally say, “Autistic people are picture thinkers” and things like that. That’s a direct quote. Given how few autistic people were speaking publicly about autism at the time that she was doing this, it’s understandable that she would make these generalizations.

However. Eventually she learned that not all autistic people were picture thinkers. Then she talked to, she said, hundreds of other autistic people about the way they thought. I’ve talked to hundreds of autistic people about the way they thought and come up with easily dozens of different thought patterns — even within the realm of visual thinking there’s immense amounts of differences as to how it happens. But instead of noticing how many differences there were, she decided to put all autistic people into a tiny number of categories as to how they thought.

So now there were “visual” thinkers, there were “music and math” thinkers, and there were “verbal logic” thinkers among autistic people, according to her. Three. Out of hundreds, she came up with three. I still don’t understand.

It’s common for autistic people to do things like that. Either assume all autistic people are like them in a particular way. Or, when they find out that not all autistic people are alike, to then decide there’s only two or three kinds of autistic people. Temple Grandin did that with her idea that there’s a continuum between “Kanner-Asperger autistics” like herself and “regressive-epileptic autistics” like Donna Williams.

Many autistic people who do this will assign one type of autistic people to Kanner autism and the other to Asperger’s. What gets ridiculous is when different people are assigning different things to both. Like some autistic people will claim that picture thinking is a Kanner thing, and others will claim that picture thinking is an Asperger thing. There are arguments about which one has more sensory issues, more cognitive issues, more self-injury, more additional conditions, etc. Pretty much none of it goes back to what Kanner and Asperger observed in their patients. Or even what they described in their patients. (What they observed and what they described are two very different things, in keeping with the long tradition of autism experts making shit up when they don’t understand things.)

But even when all these generalizations are going on, autistic people tend to know more about autism than autism experts do. Although some of us, also, learn to simply repeat what experts or other autistic people have said about autism, rather than describing our own experiences. (Some of us may not even be able to describe our own experiences rather than repeat things others have said.)

But when we do describe our experiences, and when we are not succumbing to pressure to ‘be autistic enough’, we tend to be reasonably expert about that, at minimum.

When autistic people actually become what I’d consider an expert on autism, it’s usually because we’ve spent a long time learning to understand autistic people who are not ourselves. This may be through interaction, scientific research, or personal research. And preferably the autistic people we are learning about are not in a specific insular community that self-selects for a smaller range of people. When we learn a lot about the experiences of a wide range of people, or learn a lot about specific aspects of autistic thinking and perception through scientific research, that’s the closest to an actual expert that you’re going to find.

But that’s not what most people mean when they talk about autism experts. When they talk about autism experts, they’re thinking Simon Baron-Cohen, Tony Attwood, Bryna Siegel, Ivar Lovaas, and others like them. Nonautistic people with advanced degrees in autism-flavored bullshit. Many autistic people have horror stories, even as there are a few experts who truly deserve the label. Autism experts are responsible for some of the worst spread of misinformation about autism out there, and some of the worst mistreatment of autistic people. Because when they something, people listen and obey more often than they’d listen to anyone who actually knew what they were talking about.

11:57am July 6, 2012

Tagged NSFW just to be on the safe side: The clusterfuck icon is a tiny but explicit drawing of a tangled orgy.

[Screenshot of a communication page in the Proloquo2Go software, titled Cussing. Each square has different words, each with an icon representing it. Some squares are folders that go to other pages full of words. Across the top is the area where the entire message is printed. The message across the top is “You are shitting me.”

The squares are: Pronouns (folder). Stop. Are. A. An. Off. Crap. Crappy. Shit. Shitty. Bullshit. Dipshit. Ass. Asshole. Asshat. Fuck. Clusterfuck. Piss. Hell. Damn. Douchebag. Douche nozzle. Bollocks. Bastard.]

[A second screenshot shows the same message at the top, only it says “You are”. Everything is dark except squares showing the following words: Shit. Shit. Shits. Shat. Will shit. Shitting. Shat.]

I had to do this. Since so many communication aids for disabled people seem designed to make us sound like children, and particularly angelic children at that. Because it is so easy for parents and teachers and staff to just prevent us swearing altogether, rather than allowing us a choice in the matter.

It’s one of those icky areas where they don’t want you doing something so, since for once it’s in their power, why not make it impossible? And they never even consider how that limits us, because it’s a bad thing to do, in their eyes, so why does it need to be possible? Even though they’d surely object to someone reaching out and shutting their throat any time they said anything ‘bad’.

I’m also ridiculously pleased that the software actually rendered shit’s past tense as shat. You can’t program the contents of those little windows you get from pressing and holding a button — they just respond to the part of speech it is (which also affects the color of the button’s border). It’s that feature which allows me to use “are” without adding every other form of the word.

The words across the top are just ones that seemed to make it easier to create sentences. Like off becomes fuck off, piss off, it’s pissing me off, etc. And stop for stop being an asshole. I might rearrange later but those few words seem to create a huge range of possibilities. I got as many icons as possible from within the software, but they are horribly limited with regard to explicit body parts. (Which is horrible because it restricts people’s ability to talk or ask questions about their body, including but not limited to medical stuff, sexuality, and abuse. The PCS symbol system has very explicit icons, but this software isn’t using PCS and I didn’t want to scan my communication books just to make this page.) So I had to go to the web for a lot of it.

5:09pm February 20, 2012

You can’t just force everyone to talk a certain way and think everything’s okay.

There are certain circumstances where I’m really torn. Because on the one hand I understand what people are getting at when they change terminology around. Even done it myself. On the other hand, there’s this way that terminology becomes an important way — perhaps the important way — to distinguish between those who are okay and those who aren’t. And in many circumstances that really pisses me off because it’s in no way fair to anybody.

I’m going to talk about the trans community because it’s the most recent example I’ve seen. But there’s no community that’s off the hook here because this happens in every single one of the various communities fighting for our rights.

What set this rant off? A person(*) who got pissed at another person, said they didn’t have basic “101” level knowledge. Why? Because someone said transgendered instead of transgender.

I was involved in the trans community a long time ago. This was before I realized that rather than having a separate gender from the expected, I simply have no gender at all. Looked for it, tried to make it happen, didn’t work.

Back then we said FTM and MTF and all the other sort of things like that. We said biomale, biofemale, bioman, biowoman. And transman and transwoman. And both transgender and transgendered, interchangeably. This was completely normal and accepted.

I completely understand just about every reason that trans people want to change that terminology. And sometimes I’m able to remember the changes. Sometimes I’m not. Sometimes an “ed” slips onto the end of “transgender” or something. This does absolutely not mean I don’t have “101 level knowledge”.

(Speaking of words, I find the use of the term “101” by people so concerned about using all the right words, and power and privilege and stuff, kind of darkly amusing. 101 is college level. Most people never get to college. No, I am not telling anyone to stop using the term. I just find it funny to hear people telling each other that not knowing something “101 level” is some kind of personal failing with regards to privilege and oppression, given what 101 actually means.)

Even though I respect why people have changed the terminology, I don’t at all respect the way many people use such changes as some kind of shibboleth(**). In other words, if you’re not using the exact right jargon and spellings and phrasings, you’re not as worth listening to, you’re ignorant of how things really work, you’re being disrespectful at best and hostile at worst, and you need to be educated (or just plain yelled at) before you can even take part in the conversation.

And you know what? It’s possible for a person to use the word MTF and know that the person in question was never really male. It’s possible to use biofemale and understand perfectly well that this refers to the way society understands these things, not to the way things actually are. And it’s possible to parrot(***) all the right jargon about FAAB and so forth and not understand any of that at all – in fact a person can use all the right words and still firmly believe that being trans isn’t a real thing at all. These words do not reflect a person’s beliefs or level of understanding. They reflect the jargon a person is most familiar with. They are a terrible way to measure anything at all about a person’s knowledge, beliefs, or level of respect.

And while I respect any given individual’s choice to use the language that most precisely reflects their understanding of things, I find it really awful for people to try to insist that everyone else be just as up on the latest definitions and stuff. That takes a level of involvement or awareness of certain parts of the community that is not even remotely realistic to expect of people. I’m not talking about slurs here, just terminology, but increasingly I’m seeing it treated as if it’s as bad as a slur.

There are so many ways this doesn’t work:

Not everyone has access to the communities that are putting out the new words and definitions and theory.

Not everyone is capable of understanding theory.

Not everyone can easily increase their vocabulary.

Not everyone can control what form their words will take. Or not without using a high level of effort that they may need for more pressing things.

Not everyone can “educate themselves” on things like this.

It takes a lot more words and effort to explain the meaning behind something when it goes against what most people understand and believe to be true, than it does to just use familiar terminology even if it’s a little (or a lot) inaccurate. Not everyone has the energy to spare.

Lots of other reasons besides. There’s so many levels and layers of privilege required to keep up with the changing words and theory, and be able to use what is learned, that it’s ridiculous. It’s almost impossible to list them all, there’s so many.

And that’s besides the fact that there’s considerable disagreement on both the terminology and theory to begin with.

In places where people are trying so hard to get all their words and theory right, I feel greatly out of place and uncomfortable. I feel like I’m being conditioned to weave through a mental minefield in order to communicate. That’s not an action I can sustain long and I grow to fear and resent the people who are trying to drive me to use precious and important energy levels on a whole lot of verbal bullshit maneuvers(****). So even though I totally understand why people get into creating new understandings of the world, clearer language, and so forth, I just can’t get into how that becomes a mandatory thing for everyone who comes into contact with them, and the elitism that follows.

I am far more offended by the manner people use to insist on the right terminology, and their insistence to begin with, and often their belief that their terminology is the best at all… than I am offended by someone whose heart is in the right place(*****) who uses the “wrong” terminology. Even when it’s terminology I hate. Hell, in some circumstances I would prefer an outright slur, rather than the degree of self-righteous fussing people do trying to come up with the right words and force everyone else to follow them. (Yes I know they lack the power to force most people but they still often do their best.)

Yes – there are circumstances where I would rather be called high or low functioning, or even a retard or retarded or something, than put up with this bullshit about everyone having to say things just exactly right. I’m completely serious. This is not exaggeration. And anyone who knows me knows how much I hate functioning levels (and do try to explain why they’re wrong) and slurs.

Because the things that matter to me about someone aren’t the words. It’s the things that lie deep beneath the words. It’s their level of respect and the actions they take. And there are people in the world who don’t know anything but the worst words, who are more respectful and who do more things right than many of the people who put a lot of effort into getting their words perfect. Often the very same highly oppressed people that the Internet precision-of-language crowd claim to be trying to support.

.

(*) Don’t ask me who. I have trouble tracking most people’s identities on the net unless I know them well or there’s something striking about them.

(**) I never thought I’d use that word. Here’s the relevant parts of the meaning from Wikipedia, bolting my own:

“A shibboleth (/ˈʃɪbəlɛθ/[1] or /ˈʃɪbələθ/)[2] is a custom, principle, or belief distinguishing a particular class or group of people, especially a long-standing one regarded as outmoded or no longer important. It usually refers to features of language, and particularly to a word whose pronunciation identifies its speaker as being a member or not a member of a particular group.”

“In numerous cases of conflict between groups speaking different languages or dialects, one side used shibboleths in a way similar to the above-mentioned Biblical use, i.e., to discover hiding members of the opposing group. Modern researchers use the term "shibboleth” for all such usages, whether or not the people involved were using it themselves.“

"Today, in the (American) English language, a shibboleth also has a wider meaning, referring to any "in-crowd” word or phrase that can be used to distinguish members of a group from outsiders - even when not used by a hostile other group. The word is less well recognized in British English and possibly some other English-speaking groups. It is also sometimes used in a broader sense to mean jargon, the proper use of which identifies speakers as members of a particular group or subculture.“

The way I’m using it here is that people are using the knowledge of particular jargon, knowing the exact right spelling and phrasing, to distinguish whether someone is "in the know” or not. And if they’re not, they’re usually assumed some combination of disrespectful, hostile, ignorant, and not worth listening to.

(***) My apologies to parrots, who do generally actually understand the words they use.

(****) This phenomenon isn’t restricted to people who try to force the right terminology on everyone else. There’s plenty of people who are against this kind of thing and can still create the mental minefield effect.

(*****) And I mean really in the right place. Not just saying so to get out of being accountable for something. I tried to find better words and couldn’t, but could at least figure out that if I didn’t footnote this someone somewhere would think I meant something totally different.