A bunch of stuff that needed saying

The following stuff is important stuff I wrote elsewhere on the net. If some of what I'm saying doesn't make sense, ignore it, it's just context that I'm not able to describe right now. The main thrust of what I'm saying should make sense without understanding the full context of what I wrote. And I can't rewrite it all right now for this blog. So the following is pretty much as I wrote it. Also sorry for all caps in places, it was because where I was writing it I couldn't use other forms of emphasis. And please don't assume that this is all about autism. Everyone always assumes that everything I say is all about autism. It isn't. Most of it isn't. Not even the stuff that talks about autism is all about autism. I am fed up with just about every such assumption because my world isn't made up of only or mainly autistic people and when I talk about things I always get replies saying “This applies to people without autism too” and I want to say “no shit Sherlock, that's what I meant in the firs

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.

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Aspificating snobbery over the DSM all over again

I have seen a lot of “aspies” whining lately about the proposed changes in the DSM. Not productive critique of the new criteria, the medicalization of autistic lives, or the fact that the things most autistic people have truly in common have been left out of the criteria while peripheral things nonautistic people want to fix are spotlighted. No, nothing that useful. Just out and out whining.

“I don’t want to be associated with that other kind of autistic people,” goes the standard whine line. “You know… Those Ones.” The crazy drooling retarded low functioning diaper wearing nonverbal ones who can’t take care of themselves and need to be on welfare. Which one of those or many other pejorative categories depends on the individual variation in the snobbery. (What is it? Snob not otherwise specified? Not like those other snobs.)

I’ve written a lot of posts on this blog about aspification and snobbery of this very sort. It’s been sitting around in the autistic community for a long time. And now it’s coming out of the woodwork. I might link some of those posts once I get to my main computer, just for a refresher. But this is some of the most blatantly hateful and snobbish stuff I’ve seen in a while.

What I wrote to someone earlier:

And some of us might rightly find it insulting to be referred to as the ones that others had to be oh-so-tragically “lumped in with” (you know, “crazy”, “low functioning”, “retarded”, “autistic”, or other categories that people seem to do their darndest to distance themselves from).  Like we have disability cooties or something from the way some people behave, and like having the medical people put us in the same category as our “betters” is such a terrible threat (and like it changes anything about who any of us really are).

And it’s true. It’s insulting. It’s insulting to me. It’s insulting to anyone who bears the characteristics that any individual aspified snob might throw at us. And it ought to be insulting to all of those who don’t have disability cooties At the moment either. Anyone with any decency should be appalled that people are upset, not over anything that is really going to harm autistic people as a whole, but at the idea of being thrown in with the rest of us.

It’s especially interesting to see that one of the people most widely quoted as divorcing himself from people who wear adult diapers (like me) is someone who has never seemed to hesitate to use my writing (both with and without permission) but apparently can’t stand the thought of sharing a label with people whose underwear differs from his in certain key aspects, or with people who self-injure. I guess nobody had better tell Carley that lots of people diagnosed with Asperger’s are incontinent and/or have severe self-injury. He might want to create a divide within Asperger’s to wall himself off from such people in.

Funny but I have never minded as a person who has had both such characteristics, sharing an autism label with people without those characteristics. Anyone who delves deep enough into either science or personal experience of autistic people will find that the characteristics related to perception and cognition are the ties that bind us together, regardless of the more superficial characteristics that people divide us up by. Of the autistic people who seem to have the most similar experiences on those deep deep levels to mine, include people diagnosed as high or low functioning, Asperger and autism and PDD-NOS, with IQ scores from 20 to 160. The same can be said of those who most differ from me. The reason is the diagnostic categories are neither deep nor penetrating nor accurate. They divide those with the most in common and connect those with barely anything in common in such haphazard ways it should be obvious that they are falsity of the worst kind. And the same goes when people pick these singular outward traits and hold them up as the ultimate dividing line. Like many autistics I have been saying this since I first got a good hard look at what the categories meant. And surely the deep down bones-level traits are those that matter.

People often get the idea from the media that I prefer to be called low functioning. I don’t. I don’t think that such labels can ever capture the intricate and beautiful complexity that exists within all of us. Nobody should be reduced to such a term even when they do the harm to themself by self-applying such terms. But as a person who has received that label from several doctors without even knowing it, I will stand up and resist the way it is used, and will tell people that when they speak of what they want to do to people with that label then they mean me since I have worn that label. (It is not for them to say they make an exception for me, because when people with that label are mistreated I am mistreated because the label is forced upon me whether some random guy likes it or not. It is forced on me by doctors and by people who yell out of car windows alike and is not so easily repelled.). Such things do not fit into soundbites.

Anyway just let it be known that I totally and completely divorce myself from any person or community who shuns people like me or like any other random autistic person who doesn’t meet the standards of aspified perfection. This is not the way to celebrate human diversity and it is not the way to gain status for yourselves by throwing the rest of us to the wolves. We may share an official diagnostic category (in places where the DSM is recognized), people may finally be forced to acknowledge the sameness that many of us have believed in all along, but (thank God) we don’t all share such a terribly harmful set of ethics. And thankfully it’s okay to reject crappy ethics even if it’s not okay to reject people for having unsuitably proper characteristics.   

(“Better? Fuck better. We don’t exist for the beautiful people of the world, Ted. We’re there for the oddball. The rebel. The outcast. The geek.” A line from the movie “The Specials” that just came to mind. As it always does when I am confronted with outrageous elitism.)

Anyway as much as this is a rant against snobbery it is also a call to remember what is important. Look to that beautiful shifting central set of attributes that make us alike and different. Stop using the periphery to divide us. And just as we remember the central attributes that matter, we need to look to the central values that bring us together to assert that we are of equal value no matter how we seem to differ, that we all matter and are valuable, in a deep down way not a surface feelgood way. Because we need those roots to sustain us while other people are fleeing and pointing fingers at those they don’t want to be lumped in with. And because it’s too easy to get blown away by the ethical storms that surround situations like these.

There is so much beauty in those deep levels of who we are, and it’s so easy to forget it when people are going on at great length about how inappropriate it is to see our connections when we could be dividing on the basis of things as surface level as the fabric of our underwear or our IQ points. Yes those things can make a huge difference in how we are treated and what lives we lead, but isn’t that fact something we are trying to change, rather than intensify the oppression?

Read all about Joe’s Functioning Level

I Am Joe’s Functioning Level is a great post over at Asperger Square 8, highlighting the fact that most of what gets seen as “functioning level” in autistic people is how much a person can pass for normal at any given time, in a superficial way, regardless of any other traits or difficulties they might have (which nobody would believe anyway, since they’ve already imagined up everything they think they know about the person’s life based on superficial appearances). Read through the comments, too.

Hills and cliffs.

I was just having a conversation about a difference I’ve observed between various autistic people. I want to note, before I describe it, that it’s not some kind of cut and dried division, nor is it scientific. It’s just an observation I’ve made. It’s not even a matter of “types of autism” necessarily, because a person can function in both ways at different times in their life, or bits of both at once. But I notice that some of my friends and family are primarily one way, and some are primarily another.

And be aware that when I’m talking about abilities, below, I’m talking about surface-level stuff. I’m not talking about the deeper neurological/cognitive sorts of abilities, which might be both stable and very much similar in all groups of people described, for all I know.

Basically…

Some people seem to have very stable abilities. If there’s things they can’t do, they just can’t do them. And if there’s things they can do, they always can do them.

Other people seem to experience a lot of change and fluctuation. They might be able to do something one moment and not the next, and they might always have various abilities moving out of the way to make room for whichever one is being used.

And I thought of an analogy to this, or rather elaborated on one of my old ones. Think of elevation as ability in any particular area.

Some people seem to have started off at a certain low elevation in this particular area. Then as they got older, they hiked up the slope. At the top of the slope was a nice, large flat area where they could find a place to live very easily on a long-term basis.

Other people seem to have started off at the same low elevation, but what’s in front of us look more like cliffs. We can get very adept at climbing those cliffs, but when we are, there is nothing else we could possibly be paying attention to, since too much is going to dealing with this cliff face. When we reach the same elevation as the other person, we are hanging onto a cliff face with our hands and feet. There is no possible way we could stay there. We might even be able to reach much higher elevations than the other person — the cliff seems to not have a top, from our perspective — but we will eventually have to either climb down voluntarily, or fall down involuntarily, back to our original level.

Some people might actually find a top to their cliff eventually, and thus be able to remain stably at that ability even if it took a lot more effort and falling down than someone else took to get to that point. Other people won’t find that, and will end up having to deal with cliff faces all the time.

And there is a definite difference, even in two people doing the exact same thing, between one person standing on flat ground at a certain elevation, and another person hanging off a cliff at the same elevation. They might be doing the same thing, and at the same elevation, but they’re getting at it in very different ways, and only one of them will be able to sustain what they are doing for very long. There are all kinds of things this analogy can’t get across — particularly the complexity of having skills shift around all over the place while you’re climbing those cliffs — but I hope that is one of them.

This difference between ways of doing things seems to exist within all so-called “levels of functioning” and other ways of trying to divide autism into little parts. Both sorts of people, and all combinations and variations of those ways that skills can work, seem to exist among people with all ability labels. I do suspect that some of what gets called ‘regression’ is actually just that someone was cliff-climbing and fell back down to the ground, rather than that the person was not autistic until they ‘regressed’.

I’d also like to note that at my own version of ‘ground level’ in many areas, there is a lot of stuff that’s invisible to people way high up in the air from my perspective (including me, on my climbs up here). Not all of it is bad stuff. There are abilities down here that don’t exist so much once you start climbing, and that I rely on as my more reliable abilities, that exist without too much effort or forcing. So climbing high in one area can mean leaving other things behind on the ground. And even people who climb cliffs to get to where most people start out, have actual abilities that do stay the same at some basic level on the ground. They’re just not usually considered to be that. (And people who mostly live up high but happen to walk by a cliff and fall onto lower ground, have a very different experience of this than those of us who live on lower ground but climb up onto the cliffs. Even if both sets of people look identical in some contexts.)

I hope I haven’t by now stretched this metaphor to its breaking point, but I figured it might be useful, and I’ve seen this difference create a lot of confusion between different autistic people before. (And I don’t think it’s limited to autistic people, I’m just talking about autistic people because that’s the conversation I was having that got me into this.)

The difference between what’s normal for someone and what isn’t.

I remember being confused about something that happened during my first Autreat.

After Autreat, someone was talking about how surprised she was to see a particular person having a particular kind of trouble. (I’m being vague on purpose, the kind isn’t all that important and the people involved probably want to be anonymous.) I was surprised how focused she was on this, given that lots of people there (including me) had the same kind of trouble and she did not seem alarmed that the rest of us did. I asked her about it but she hemmed and hawed more than she gave an actual answer.

I eventually got an answer from a friend of hers that was more blunt: “Nobody looking at you expected you to be high-functioning enough not to have that trouble anyway.”

Oh. (Keep in mind at that point I regarded myself as being, and looking, extremely “high functioning”, and believed in functioning levels. This was awhile ago. But, more to the point, I didn’t always have that trouble to the extent that I had it after flying across the country, especially after getting stranded between flights.)

Today a guy came over who works for the nighttime emergency service I use in lieu of a roommate. Normally, they’re sent over here for bad situations. Often I’m some combination of very ill, in pain, and immobile. Apparently there’s some mandatory part of the program that involves them coming out and meeting us on an ordinary day periodically. And I’m beginning to see why.

Someone who mainly sees me during emergencies is going to have a much different understanding of what my baseline abilities are, than someone who sees me on an ordinary day. In fact, a person who doesn’t know me well could easily mistake the way I’m doing on a bad day, for the usual, and thus not really worry even if I’m showing clear signs of something being incredibly wrong.

This isn’t just true in medical situations, either. People who worked for this agency have disregarded signs of emotional stress on my part before because their presence caused me enough stress that they never saw me un-stressed. When my friend had to explain to them that normally I’m a fairly animated person and don’t sit meekly in a corner saying yes to everything unless I’m terrified out of my mind, they had trouble believing her.

So it actually seems like a really good idea to have people get familiar with what someone is usually like, even if what they’re normally going to be dealing with is emergencies. That way, they can tell the difference between something being wrong and something being normal for that person.

(BTW, the recent absence of posting is because I’m working on a video about my cat, and cats take a lot of time to film, at least in the contexts I’m trying to film her in.)

“Functioning Level” and desire for cure

I have said for a long time that not only is the idea of a unified functioning level misleading, but that perceived ‘functioning level’ is not as far as I have seen related to whether a person wishes to become non-autistic or not.

But I was talking to another autistic person the other day, and I noticed something that runs the opposite of conventional wisdom on this matter: The people I have seen who detest their autism the most, are often (not always of course) people who can almost fake normalcy, but not quite. People who can appear almost as if they are not autistic, almost make it in the non-autistic world, almost ‘succeed’ in life.

And I think of my own life. I refuse to identify with a particular ‘functioning level’, I have been classified as low and high for reasons that had nothing to do with me and everything to do with the ones doing the classifying. I am told though that even when I attempted to look normal, I was not succeeding. I am far removed from the life that most people see as a ‘normal life’. I am easily recognizable as out of the ordinary by others (in the offline world).

While I have had struggles with self-hatred, I have had to come to terms rapidly with the reality that there is no possibility of reaching non-autistic normalcy, as a matter of survival. This seems true of many autistic people who share my views.

This is not the only factor in the cure/anti-cure debate, but I find it very interesting that one aspect seems to go opposite to how most people predict: That people closer to the outward appearance of non-autistic norms are in some respects more likely to wish to be non-autistic (even if it is just as impossible for them to do so as it is for me to do so). I doubt I am articulating this properly, but I hope my meaning will be clear.