Some days I think I’d be willing to be cured just to *make this stop*. This is too heavy. Too much hate.
Ugh I know what you mean.
Also, I don’t know if this is related or not, but
Back when people started saying I was a fraud. I developed this fear, not sure if it was rational or not. That if people really believed them. Then I would be expected to do things I could not in a million years ever do. And then punished for not being able to do them.
Which brought on horrible flashbacks to institutional settings where people did expect what I couldn’t do and then get in my face and mock me for my inability to do it, saying that of course I could do it if I really wanted to, and sometimes withheld things I badly needed because I couldn’t do what they were demanding of me.
And I think that sort of thing is somehow tied to what you’re talking about but I can’t explain how.
This is Proloquo4Text, an AAC program for iOS devices. It does only text, unlike Proloquo2Go, and stays on a single page. It has word prediction, sentence prediction, and a side panel of pre-written words and sentences.
It’s cheaper than Proloquo2Go. For the moment, it’s US $64.99, €59.99, AU $69.99, and £44.99. Starting December 31st, it will be twice that amount. This is similar to the discount offered Proloquo2Go users in the beginning (which is when I got my copy of Proloquo2Go).
You might be interested in this if you need AAC with good word prediction and high quality voices, but not have to pay for picture symbols you’re never going to use.
The colors and fonts are customizable. It doesn’t have to have a brown background or Avenir fonts, that’s what I did to it.
I’m using it for my word-based communication and Proloquo2Go for my picture-based communication because it has always been hard for me to switch between picture and word modes on Proloquo2Go. (A cognitive problem, not a fault of the program.)
I’m starting to have some kind of a motor problem. I think it’s been building for years, it might be part of my movement disorder in some way. It’s definitely not physical weakness or a mechanical problem with the joints or muscles. It’s more like a motor planning problem of the sort my movement disorder causes.
The above (first image, the set of four photos) is sort of a simulation of what happens, that I did on purpose, but the real thing looks pretty similar. Basically, I’ll be on my iPad, which is where I notice it the most. I’ll put my finger into a pointing position because I only want to be touching one part of the screen.
Then weird things will start happening with the screen. I won’t understand why at first, just things will stop working, windows will disappear, etc. And it turns out that my hand has unwrapped itself from a pointing position and is now just in the third or fourth position up there, and the other fingers are hitting the screen.
It takes an extreme amount of concentration to keep my hand in that pointing position. The moment I forget what I’m doing, even for a few seconds, my hand unwraps itself and is now not pointing anymore. It’s very frustrating, and it’s only getting worse.
There’s a lot of things like that, that are hard to explain to anyone who doesn’t experience it.
What I’ll end up doing instead, because it’s easier for some reason, is pointing with one finger and slightly curling the other three so they’re lifted up a bit (like in the second image, larger single photo). But even that is prone to problems.
And it seems to be very specific to pointing while pressing buttons or using a touch screen or something like that. Simply pointing while doing nothing else is much easier. The problem is that I have to think a little in order to point, and I also have to think in order to move my hand, and they just don’t combine very well.
Even when I try to point without typing, though, there’s this feeling like I’m straining to do it. Not exactly physically, more in that area where physical and mental meet. Like it’s just not a natural position for my hand to go into, and it doesn’t like it.
It’s funny, typing is a much more complex set of gestures and yet it’s usually pretty easy for me to touch type, but pointing is quite hard. It’s the sort of movement that I sometimes fear that if I had to do it for something really important, it just wouldn’t work.
I love doing my thing while someone else is in the room doing their thing. Like if you come over and you want to sit by the window and read while I sit on the floor drawing something and listening to a cd that would be very nice.
I need to be around people most of the time, but most of what I like to do is solitary, so this is actually my ideal way of spending a day. When my boyfriend and I are both home working, there’s this amazing companionable feeling.
I love doing that kind of thing too. It’s one of my favorite ways to interact with people.
I’m pretty sure there was supposed to be a meaning to this when I created it, besides the fact that I was trying out an interesting graphics program. Maybe something about the way when I can’t really control stimming around other people, I sometimes feel like a specimen in a jar? But I don’t honestly remember because it was so long ago.
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.
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.
How out of touch the LGBT community is about disability.
At an LGBT community center, I talked about how many developmentally disabled men, in particular those living in institutions with no say over their lives, have been forcibly castrated for showing sexuality, especially gay sexuality, and/or for cross-dressing.
The first question out of someone’s mouth (a nondisabled trans gay man):
"Did they ask to be castrated?”
He wasn’t being sarcastic. He was actually equating forcible castration with voluntary sex reassignment surgery. And there was an undertone that maybe I hadn’t thought of that, maybe I didn’t know enough about the situation to be condemning the practice.
I had no words, I couldn’t even respond. Like… it shouldn’t even take explanation how wrong he was, and I couldn’t find words to explain the gulf between us. Still barely can. But:
HAVING YOUR GENITALS FORCIBLY CUT OFF FOR BEING SEXUAL, OR FOR BEING LGBT, IS NOT THE SAME AS BEING TRANS AND HAVING YOUR GENITALS VOLUNTARILY MODIFIED BY SURGERY.
I don’t know how that can be confusing.
Why is there no short, easy-to-remember phrase for this level and kind of assault on a person’s body? Like abuse, sexual abuse, and forced surgery don’t even cut it.
Years and years ago, I lived near Santa Cruz. One day, I was waiting for my friends. And I encountered some truly horrible people.
It was a husband and a wife, or so they said. I have no reason to trust anything at all that they said.
They approached me and started talking. I don’t remember all of what they said. I know they kept talking about sex. They kept touching me. I kept trying to keep them from touching me. They felt wrong, like a dark cloud was all over them. The man said horrible things at the expense of the woman.
Then they noticed that I was stemming on a koosh ball. (I’ve unfortunately lost it, and it was a kind that isn’t made anymore and I can’t find anywhere. If anyone knows where to find a “so-soft koosh ball” I’d be really interested. They have thinner pieces and are therefore softer. Mine was purple.)
The man told me that he had a koosh ball just like mine, in his car nearby. He told me that if I came to the car with him, I could see it. I declined.
They started getting pushier about trying to get me to go to the car with them.
I told them I was waiting for my friends.
They told me “You don’t have to wait for them. We’re your friends. We’ll be your friends. Just come with us.”
I stuck to it and eventually they said some nasty things and walked away.
I went to see my friends, spent some time at their house, went back downtown, got picked up and driven home, and only after I’d been home for awhile did I realize what had almost happened to me.
Understand, I was about 23 years old when this happened. I was not a child, even if their approach to getting me in the car was the same one you’d use on a child.
Also understand that soon, in the newspaper, I read about a spate of stranger abductions/rapes of developmentally disabled women in the same exact area of town.
And then understand that although I detested them on sight, I did not realize the level of danger I was in until I got home. Nor did I realize why I was being singled out, nor recognize the “get in the car and we’ll show you this neat toy” thing from all the “stranger danger” stuff I’d been taught as a kid.
There were two reasons for this:
One, you don’t expect people to do that to you as an adult. I mean, you expect potential rape, you don’t expect people to say “get in the car and I’ll show you a toy” to do it.
Two, I have a terrible ability to remember things in the moment. I remember things when something specific jogs my memory, at which point I remember them incredibly well. Better than most people would. But I don’t remember them unless something does very specifically jog my memory. And I certainly don’t remember them when my mind is too occupied with the sensory bombardments of being downtown on a busy day in a crappy, painful wheelchair.
I had a similar problem when I was a few years older. I was living with someone while construction was being done on my apartment. The person I was living with was in a legal battle.
One day, my roommate left the apartment for an appointment. A woman knocked on the door. I opened it. She came in. She inspected the entire apartment. She looked in every room, she looked underneath things, she looked in corners, it was weird. Then she left. Without a word to me.
It turns out she was a lawyer for the other side of the legal battle. She had waited until my roommate was gone, figuring, correctly, that I wouldn’t know enough to keep her out of the apartment. My roommate was beyond pissed off at me, and screamed at me for awhile about what an idiot I was.
I had gone on autopilot. I was used to strangers coming into my apartment (otherwise known as staff, at that point there was a new staff person every week because I didn’t have “regulars” yet and my case manager was as crappy as they come). I didn’t know I had any right to turn them away, and even if I’d known I might have let them in anyway if I didn’t remember.
What both of these incidents have in common was that at the time they were happening, I might not have liked what was happening, but I didn’t recognize the danger in what was happening. I didn’t fully understand what was going on. I got lucky in both instances, even if the second one wasn’t good, still no serious harm was done.
But at the same time as the second one happened, my roommate and I were getting death threats. People were walking up to the door and screaming threats to ourselves and our pets. What if the woman I’d opened the door to had been intending physical harm, rather than “just” legal harm? I hate to think about it.
It’s not that I’m unaware that danger can exist. It’s that while I’m going about my daily life, my mind is too occupied with far more basic things. And when I do constantly feel in danger, it’s no help to me because my instincts aren’t in line with what would actually help, and the sense of danger is more vague than tailored to specific instances. But most of the time, I am too busy coordinating sensory input and motor output (not to mention all the cognitive stuff in between) to anticipate and respond to situations like this.
The only way that I can do anything about it is to constantly practice rote responses to specific situations, over and over, until they become so automatic that they require no more thought than anything else does. Especially if I can get a situation to trigger a specific response, and ingrain that response thoroughly. That works better than anything.
But simply teaching me intellectually about what to do won’t work.
Intellectual teaching doesn’t filter down into my actual responses to everyday situations. It’s like it exists in a totally different universe than my actual everyday experiences and reactions and real-life situations. I don’t know why it doesn’t work, but it doesn’t work.
And people seem to expect me not to know things and then try to take advantage of that. Whether they’re successful seems to depend more on whether my other reactions happen to let them get away with it or not, not on whether I respond like I ought to respond because i know what I ought to know. Because even when I do have common sense, I can’t seem to call it up at the appropriate time.
I used to be one of those obnoxious people who told people with ADD that ADD didn’t exist.
Because they’d tell me the traits of ADD and I’d say “I have those, and I’m not diagnosed, so it must be normal…”
I think some people do the same thing with autism these days, for the same reasons.
(I’m not sure if I actually have ADD, or if I just have many of the traits because I’m autistic. But when people with ADD told me about it I flat refused to believe them. But some of them caught on and told me I probably had it, which made me believe them less. I know, I was horrible. But I got better.)
I did the same thing with learning disabilities that I probably had or had traits of due to hyperlexia. Like I remember a guy saying he thought maybe he had a learning disability because he read pages and pages of text and couldn’t understand a word of it, and I said that was totally normal I did it all the time.
*headdesk* *headdesk* *headdesk*
And I don’t know why I did that, because I knew full well at that age that I was different, but when it came to various diagnoses I just refused to believe they had any meaning whatsoever. I guess I didn’t know precisely how I was different, and how different so many things were. And denial can be a powerful thing.
I just strongly suspect some of the “this doesn’t exist, everyone is like that” people actually have the condition in question and are in varying degrees of denial. Not that it makes it any better in the short run, but some of us get a clue once we understand.
why are words going away like this
like not totally gone but really hard
for some reason
and seems to coincide with physical crap