This turned into a long post, and it may not apply to the people I’m replying too, but this conversation just brought up a lot of things I’ve been thinking but having trouble saying.

Thank you for writing that. It’s really important.

Also another point I want to make. There are many autistic people whose best method of communication is nonverbal. By which I mean, not speech, not writing. Some of us this is true of, can communicate well by speech or typing also. Some of us can’t. But we usually have trouble with receptive language — either some of the time, all of the time, or especially, during the early formative years of our lives. I’m one such person.

Most people don’t know this because the current theories of autism all involve us being terrible at nonverbal communication. By which people mean, terrible at one specific kind of nonverbal communication that most nonautistic people are good at. Also, most autistic people who can talk about their experiences in words, are (or believe themselves to be) bad at nonverbal communication, and their experiences get seen as applying to all of us, when this is not true.

So for many of us — nonverbal communication, and the world of things outside of words, are our best way of communicating. Whether we can also use words or not. I wrote about one such group of autistic people in my contribution (“Untitled”) to the Loud Hands anthology. Because I want people to know we exist. Because I want other people like me to know they aren’t alone, in an autistic community made up mostly of people who experience themselves as terrible at nonverbal communication. Where people even say that autistic communities are communities where people can use text or other forms of language, rather than having to deal with nonverbal communication. Even though there’s plenty of us who do better in person, BECAUSE we communicate best nonverbally, because words, whether we can do them or not, whether we are or seem good at them or not, are so hard and so difficult and so painful to keep using.

There are entire groups of autistic people out there who communicate with each other using our own unique forms of body language that are different from nonautistic body language, different from other autistic people’s body language, specific to ourselves, specific to each other. Who communicate best reading each others writing, looking for the patterns that exist between the words, rather than inside the words themselves. Who communicate best by exchanging objects, by arranging objects and other things around ourselves in ways that each other can read easier than we can read any form of words. Who share the most intimate forms of communication, outside of words, outside of anything that can be described easily, in between everything, seeing each other to the core of our awareness. Who see layers upon layers of meaning outside of any form of words.

In “Untitled” I was writing about my favorite communication ever, my video chats with AnneC (and her cats, when they show up, which Shadow absolutely loves communicating with me over video and reminds her every Friday at the right time because he loves it so much). I don’t necessarily do the best at visual stuff the way most people think of it. But I can see the patterns of movement in other people, including cats, whether or not I see them well in the usual forms of visual perception. And those patterns of movement tell me more than any word ever could.

I can even read nonautistic people fairly well at times — just not in the ways nonautistic people read each other well. That’s one of the problems with nonautistic research into autistic people’s abilities to understand nonverbal communication. Most of it relies on the understanding and use of words at the same time as understanding the nonverbal communication. And most of it relies on the kinds of nonverbal communication that nonautistic people are most aware of. This frustrates me to no end — how can people research forms of understanding that they don’t themselves have and therefore they don’t themselves understand even exists? I’ve actually told researchers ways they can research autistic people’s understanding of nonverbal communication without having to resort to the faulty methods they usually use.

And one researcher told me, when I asked, that every parent of an autistic child she ever met said that their child picked up easily on things like stress in the household, but that SHE ACTUALLY DISREGARDED IT UNTIL I ASKED HER, BECAUSE SHE’D BEEN TAUGHT THAT AUTISTIC PEOPLE COULDN’T READ BODY LANGUAGE. I’m totally serious. If researchers are that biased themselves, how can they possibly hope to even notice that we can understand things they assume we don’t understand?! I taught that researcher a bunch of very simple ways to test that without relying on the painfully stupid research methods that guarantee researchers will find only what they expect to find — relying on us to use and understand words, relying on our understanding of actors and stage conventions rather than real people’s real nonverbal communication, relying on nonautistic people’s limited ability to read autistic body language, all sorts of other flaws that seem obvious but that researchers themselves seem never to notice. So hopefully she will set up some real experiments that show our real abilities.

Anyway. Back to what I was saying. There’s entire subgroups of autistic people out there _ not just my own — who rely on nonverbal means of understanding the world, and nonverbal means of communication. That’s one reason I usually put myself in my videos — because I know that certain other autistic people will be able to read me like a book, even if nonautistic people usually can’t. And that nonverbal communication is a crucial part of my videos. (See why the entire first half of “In My Language” has no words in it. I was trying to make a point about the best way I communicate, the best way many people communicate, autistic or not, verbal or not. Mostly lost on people, who think it’s a video about autism. It’s not. It’s a video about communication and understanding and personhood, that happens to be made by an autistic person. Big difference. I told CNN why I really made the video, and they left out that part of the interview in favor of putting their words in my mouth. I think my real intent was too political for them.)

Anyway. I may be a writer, but my real best form of communication has nothing to do with words. I use words because I have to. Because most people won’t understand me if I don’t. I don’t use them because I like them, or because I “can’t do nonverbal communication so text is best for me”, or any of the usual reasons most people assume. If I could never use language again, spoken or written, I would be really happy. But the world won’t let me do that, so I carry on using a means of communication that is outright painful for me.

I don’t know the people in the video, but I know that the way their bodies move makes intuitive sense to me and communicates things whether they intend it to be so or not. (The forms of nonverbal communication I understand best are unintentional, in fact. That’s one reason tests using actors don’t work on me. I know an autistic woman who failed a test of nonverbal communication because it used actors and she kept describing their real feelings instead of their acted ones. What this says about nonautistic people’s understanding of nonverbal communication is… interesting.) Whether they are able to use spoken language or not, the video would lose a lot if it only relied on showing them speaking or typing the words.

And I really dislike a lot of the self-advocacy movement for relying mostly on the self-advocacy that happens through words, written or spoken. This leaves out people who can’t do either but who are nonetheless quite capable of advocating for themselves through their actions and movements. If I hadn’t spent a lot of my life forcing myself to do words, I might be such a person, so I am always aware of this. Words are not natural to me the way they are to some autistic people. They’re difficult and my development could have gone either way. There are also people who, no matter how much effort they put in, could never have used or understood words, and they are also extremely important, and they are also capable of self-advocacy, and they are still capable of communication that is more full of meaning than the communication of many people who use words.

I wish there were videos using their communication — which by definition wouldn’t involve words. Both people who would have been able to use words had they put in a crapload of effort at critical times in their development, and people who would never be able to use them no matter what. Such people exist. I sometimes wonder if they are too inconvenient for some autistic people to remember. I hate when people tell parents, “If you just gave your child a communication device they would be able to type words (or use picture symbols) and everything would be solved.” You don’t know that. You just can’t possibly know that. I hear that a lot, this idea that autistic people would all be able to communicate in words if only they were given a means to type them instead of speak them. And it’s so not true that its utterly ridiculous. I hear it both from people whose main way of communicating is speech, and also from people who use typing, and people who use both. It’s wishful thinking and it’s not true. There are people whose understanding of the world is just like a typical “aspie” except they couldn’t speak for motor reasons, and they are the most likely of those who use typing, to believe this myth.

Reality is that there are lots of people who will either never be able to use words, never be able to understand words, or both. Or whose use or understanding is so limited that they will never be able to use words as their primary means of communication. But they do communicate, whether the communication is intentional or not. And they do matter. And they are capable of self-advocacy. And they should be included in self-advocacy movements if those movements ever expect to represent autistic people, developmentally disabled people, cognitively disabled people, disabled people in general, whatever group is trying to represent itself in that movement. And in order to include them, you have to show their movements and their sounds and all the things they do that aren’t words.

It’s true that many people who are thought not to be able to use or understand language, actually are. And it’s terrible that they are overlooked. But in their desire not to overlook such people, many people claim that all disabled people who can’t communicate through speech fall under this umbrella. And that’s simply not true. In order to communicate with people who will never use words, you have to learn their language. (And surprise, that’s one thing that “In My Language” was actually about. And it would be about that whether I used typing or speech to communicate — either one would be my “second language”, and as such I can easily, easily envision a situation where I never learned and never would learn to use speech or typing, both of which I used at different points in my life.) And each person has one. Sometimes several people have a language that is in common but is not words. Sometimes each one has a separate way of communicating that is not words. But either way, you have to learn how they communicate, not force them to either communicate how you best communicate, or else be considered “non-communicative” for the rest of their life. And yes it’s possible to get consent to use their communication, it’s just sometimes harder work than asking a yes or no question in words.

And a community that doesn’t include such people isn’t my community. The developmental disability community is far better at including such people than the autistic community is, even though not all of the DD community manages it either. One reason I’ve spent a lot of time communicating with people who can’t use words in any form is because I’ve been in the developmental disability system for pretty much my entire adult life and have spent a lot of time with a wide variety of people. And I’ve spent a lot of time communicating with people who can’t and may never use speech or typing or even picture boards. And that’s something that certain segments of the autistic community are sorely missing. Even parts of the autistic community that involve people who don’t use speech, are often made up of only those people who were able to learn typing, and often put forth the (false) idea that everyone could learn typing if only they tried hard enough or were exposed to the proper teaching methods.

The response someone made is true: Some of the people in the video use typing, so they could never be shown speaking the words in the video. But I’d like to go further than people who use speech and people who use typing, because unlike a lot of people, my social world is made up of a lot of people who can’t do either one. And also made up of a lot of people who, even if they can use speech, typing, or both, those are not their best means of communication, and it would be better to show us using our best means of communication rather than merely the form of using words. Not everyone has words but everyone has a voice and a means of communicating. And not everyone who uses words sees words as their primary voice or their primary means of understanding things, and that needs to be respected. And I’m sick to death of spending time in communities where most people seem to miss these facts, and automatically see having a voice as the same as using speech or at least using language.

Posted with Blogsy

PORT ST. LUCIE — Melissa Barton said she is considering legal action after her son’s kindergarten teacher led his classmates to vote him out of class.

After each classmate was allowed to say what they didn’t like about Barton’s 5-year-old son, Alex, his Morningside Elementary teacher said they were going to take a vote, Barton said.

By a 14 to 2 margin, the class voted him out of the class.

Barton said her son is in the process of being diagnosed with Aspberger’s, a type of high-functioning autism. Alex began the testing process in February for an official diagnosis under the suggestion of Morningside Principal Marsha Cully.

Read the entire story here.

This reminds me forcefully of a warning that Laura Hershey gave a long time ago in her “Crip Commentary” web column, after viewing the series “Survivor” on television.

She went on to write “Survivor” Promotes Ideology of Exclusion:

In the midst of these escalating social conflicts, there now appears a game show — mere harmless entertainment. It’s fun, gossipy — so we don’t question its underlying principles. But the rules of this “game” seem designed not just to reward the winners — that’s an expected part of any game — but especially to punish the losers.

Somehow, I realized, this game seemed eerily familiar to me. I remember exercises I participated in during adolescence — several times at church youth camp, once in a high school class — called “values clarification.” This involved a group discussion about making difficult choices in some hypothetical adverse situation. As I recall, these exercises were supposedly intended to help us understand our own beliefs. That sounds benign, even enlightened. But in reality, I remember I often felt deeply troubled not only by the outcomes of these discussions, but also by their instigation.

A typical example: My peers and I were told to imagine being stranded on a lifeboat, along with an assortment of strangers and a dwindling supply of food and water. Our companions on the boat included a young pregnant woman, a surgeon, an unemployed drifter, an elderly man, a Boy Scout, a woman with cancer, and so on. The setting and the cast of characters varied, but the basic idea was that some people would make it, and some people wouldn’t — and that it was up to us to decide, based on what we thought of the relative value of each fictitious person.

I never had much to say during these discussions. When they were over, I often had a queasy feeling that stayed with me for several days. I never fully understood why, until much later, as an adult. I gradually came to understand that these so-called “values clarification” exercises were based on a preordained set of values, which I could not accept. The games assumed that there weren’t enough resources to go around; and that some people have more value, more right to live and to consume resources, than others do.

I remember the same queasy feeling when watching the show “The Weakest Link” — which functions like an ultra-crisp, ultra-efficient version of “Survivor”. People are voted off each round, and when they are they are told, “You are the weakest link — goodbye.” It’s like a distilled essence of social darwinism. And people seem to love it.

And people seem to learn it practically from the cradle, unless it’s just some kind of awful misguided instinct. The following will be familiar to nearly any autistic person who wasn’t extremely lucky. I’m only picking from my life because it’s easier to remember my own observations than someone else’s.

I can remember being near the age this kid was, and walking onto a playground at school. There seemed to be a lot of fascinating things to climb, so I tried. And was promptly grabbed from all sides and shoved off the structure, to repeated cries of “Amanda’s on the ship!” If I by chance (because I don’t know how else it would’ve happened at the time) drifted into one of the lines that the other girls were always forming — “Anyone who wants to play My Little Ponies, line up!” and so forth — I heard an emphatic and smug “You can’t play”. And I also remember the first kid among this same group of kids who seemed to be nice to me — who was then marched in front of me by another kid and told to repeat, “I don’t like you” to me. She did. That was the end of that. If the words to any of these things were a mystery to me (and all but a tiny number were), the tone of nastiness and exclusion was unmistakable and it happened without fail when I ended up in the path of groups of kids.

And I remember as well that when I was bullied so mercilessly — at an age where I understood far better what was happening — that I was afraid to go to school and lashed out defensively at nearly anyone who tried to interact with me at all, I was the one who got counseling, and I was the one who was talked about by teachers as if there was something wrong with me. And I was the one who had to repeat a grade and change schools. The bullies were left to go on doing their thing, because it was only natural to be nasty and cruel, but wholly unnatural to be terrified of people who acted in this manner. I’m not saying I never did anything wrong, nor that I treated everyone with absolute kindness. Not even close, and I imagine at times I was a nightmare to deal with in my own right. But good grief.

I also remember thinking that I’d finally escaped all that, in my ill-fated attempt at high school. Even years later, I thought that while people had certainly said nasty things to me, I’d gotten off light. Then as an adult I got in touch with James, who’d been one of the kids who was more likely to hang around with me at the time, and who apparently got his own share of grief for even doing that. He told me that he’d been bullied pretty badly in junior high, but that he hadn’t seen much like what I got in high school, including the fact that even some of the teachers were in on it.

(And yes, teachers were in on some of this stuff throughout school. In one memorable instance a teacher who frequently found new and creative ways to humiliate me so the other kids would laugh, actually wrote home to my parents about my great “sense of humor” — which seemed to actually mean, that he enjoyed laughing and getting others to laugh at my expense. Others, like a particular gym teacher, were more into physical rather than emotional violence. Some teachers were okay, but some of them seemed outright sadistic. A shocking number of autistic people I know, me included, have had teachers or other authority figures ask everyone in the room to tell us everything they hate about us.)

I wrote in a previous post about some of the long-term effects of things like this, and I noted the following:

I’m not telling this story to make you feel bad for me as a person. I’m telling it because assorted variants on these experiences are so close to universal among the autistic people I’ve known. How can you get a good idea of the social abilities or emotional range of a set of people who are treated like this from the moment we encounter other children, sometimes from the moment we encounter other people at all?

I still want to know this.

I also want to know what on earth it means that it’s considered “good social skills” to learn to be one of the people that excludes. And autistic and non-autistic people alike can eventually learn to be that, even if we weren’t much like that to begin with. I’m not trying to say we can’t, I’m not going to pretend not to notice what happens to autistic people who gain the power to become exclusive. But it’s sheer ugliness that these horrible things are treated as normal, and being the target of them makes you seen as somehow worse than the people doing the targeting. And the people doing the targeting are seen as the ones to emulate, it seems like.

It was also an ugly truth to realize that while some people grow out of it, many people who begin as bullies grow up to remain bullies. I fully realized that when a parent of an autistic kid called my friend a “retard” when he was mad at her, then later went on to say that he always tells his son to quit acting like a “retard”. I imagine that if he’d gone to school with me or my friend he’d have done worse than name-calling. (This is also reason #4285 why I don’t believe that “special children are given to special parents” nonsense.) It wasn’t the first time I’d seen an adult be hateful by any means, but it was the first time I connected the adults to the children in my head.

Daniel Mont wrote a book, A Different Kind of Boy. It was about his autistic son Alex. Daniel wanted to put Alex in a gifted program, because Alex was ahead in many areas and he read literature suggesting that Alex’s social and perceptual differences might actually be partly the consequence of intellectual differences. There’s an entire chapter on it that everyone should read. Alex took an IQ test and met all the requirements for the program. Then he went to one meeting of it. The other children, who were regarded as perfect and exquisitely sensitive, decided, apparently, that they didn’t want Alex around. The parents backed them up completely:

“You mean, you’re not letting Alex join?” I was incredulous. “He passed your IQ test.”

“Yes, but the other children feel he really isn’t one of them. Do you konw what I mean? I’m sure there are other programs he can sign up for. We’re sorry, we feel bad because you and Nanette were so nice.”

“Well, what did he do?” I fought to restrain my anger.

“I’m sorry, Mr. Mont. Our decision is final. We really have to trust our children on this.”

I hung up the phone. I was furious. Absolutely furious. What kind of monsters were these people raising, anyway? “They are not like us. We can tell if he belongs.”

And at that point he realized the elitism that runs through most such programs (all that I’ve seen anyway, and not just intellectual elitism either — the gifted programs I was a part of were mostly populated by middle-class or wealthy white kids, most of whom wouldn’t have been put there were we anything else), and the disturbing nature of the assumption that the children were the ones best able to make the decisions in this matter.

I have read in the past about schools in some places — most American schools are not like this — where children work together to solve problems, and where the kids who learn faster in any particular area, instead of being separated out and told they’re special and above everyone else, end up being taught to use their talents to cooperate with the other children. “Winning” or “getting ahead” isn’t the goal there — and all the children tend to learn more than they do in the more cut-throat style of schools. If schools have to exist that sounds like a much better set of principles to run them on.

As I mentioned in my other post — my brother was, as he describes it, the “town scapegoat” in the small town I was born in. People sometimes think he’s exaggerating to say that everyone hated him there, just like they sometimes say my friend Joel and I exaggerate when we say teachers joined in with some of the other kids’ bullying towards us. From what our parents say, if he’s exaggerating it’s not by much.

Oddizm claims that autistic people are “eminently hate-able”.

I don’t think we are. But I think that we are, like many other disabled people, subject to widespread hate. And that the hate often wears a lot of other masks — but is, basically, hate, in all its guises.

And hate in some of its most raw guises is what autistic people encounter in kindergarten.

If schools are going to exist and teachers are going to teach in them (and I’m not a big fan of schools, but I know to say they’re widespread is an understatement), they ought to discourage hate and exclusion. As should parents.

They ought not to join in.

And they sure as hell ought not to outright invite it and celebrate it the way this teacher has.

If this were the way things were done, then anyone who was the wrong kind of “different” of the day — autistic or non-autistic — would be voted out of every kindergarten where prejudice against people like us existed. I would’ve been “voted out” in preschool, and the kids were doing their darnedest to try even without a teacher’s encouragement.

Children aren’t born knowing how to behave towards other children. None of them are, autistic or non-autistic. They have to learn that everyone’s dependent on everyone else, that people aren’t better than others just by being better at something, and that tendencies to do bad things to other people are things we all have to fight, not give in to, if we want society to be remotely just to anyone.

And this teacher is leading these kids in the wrong direction to learn any of those lessons.