A bunch of stuff that needed saying

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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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10 responses »

  1. Thanks for the important post.

    I think if I had to decide I would say typing is my “first language.” Speech and nonverbal- the kind of nonverbal you talk about here- are close, but ultimately virtually everyone I interact with expects speech so that’s what I end up using the most and getting the most practice with. Sometimes I’m not actually able to use speak, but I’m vary rarely unable to -understand- speech unless it’s for auditory processing reasons. When I’m dealing with overload sometimes I wish I didn’t understand speech because having to sift through and make sense of it can just be too much and I don’t know how to turn it off.

    What this means is that the “internet autism community” is extremely friendly to me since people who communicate like me are naturally drawn towards the internet. The internet allowed me to develop abilities and learn to understand things that I never would have otherwise been able to do. Since a lot of the real world “autism community” grew from the internet that means it is relatively friendly too.

    Re nonverbal stuff, since I’m not staring at people’s eyeballs all the time I do often notice things that other people don’t and I think I’m also more aware of their tone of voice. I notice people being uncomfortable, sad, etc where other people see someone as being angry, happy, etc because people at least in this culture have been trained to only pay attention to a very narrow range of things. I expect that if I didn’t understand speech or somehow lost the ability to I would become much better at this, much like the blind people who are often able to notice things that the nonblind don’t.

  2. I rarely comment on your posts, but I’d like to say here what I frequently think when I read your blog: Thank you for making me think. I enjoy thinking and learning, and another perspective to consider and chew over always has me coming away satisfied (if not always happy as such, depending on what it is).

    Autism itself is sort of a monomania for me, and I frequently observe the autists I know in much the way my husband similarly observes the non-autists. I can’t say I’d thought too hard about non-verbal communication to the exclusion of language, though – I don’t happen to know any such autists in person, and anyone I meet online is already filtering for those who can type – given the areas I tend to frequent, even mostly those who type well and naturally.

    I had already observed that the ‘bad at body language/no body language’ thing is bull, though. We’re just bad at *their* body language. Interestingly, I’ve learned that aspies tend to actually do much better than NTs when it comes to reading emotion in the absence of other body language – such as in a shot that includes only the eyes. This probably has something to do with the actor test you’ve mentioned, as body language can be masked by acting but the eyes frequently cannot, or not entirely.

    It doesn’t suprise me too much to hear there’s such a wide spectrum in non-verbal communication. Even just within those who do communicate with speech/text, even primarily, I’ve noticed that it’s almost like aspies run on a spectrum of different ‘frequencies’. There are those who understand each other perfectly, on the same ‘frequency’ if you will, and at the same time others will be completely unable to surmount the communication barrier even when they are otensibly communicating the same way. Even in an enviroment supposedly devoid of any potential for variation due to the lack of any body language, namely text-only.

    I think that’s a big part of the difficulty NTs have with regards to studying autism, or ever truly understanding it. It isn’t just that we’re so different to them and what they know, that they have so much trouble thinking of ways to conduct studies that aren’t automatically biased by being inextricably tied to their own methods of communication, their own ideas of behaviour and development. The problem is also that we’re so different from *each other* so frequently. I’m not sure how many NTs have noticed that yet, but even the most basic diagnostic criteria doesn’t tend to be a case of ‘will display x’. It’s frequently a case of ‘will be at one extreme or the other of x’, at least for binary traits… the more complex the trait, the more it turns into ‘anything but what NTs display’. The only truly unifying characteristic I’ve really noticed that one could point to among autists is that, while NTs tend to be a relatively homogenous and unified group, autists by contrast, as a group, personify variation. Not variation in any one particular direction… just variation, in any direction. Depending on the autists you pick, they can be just as unable to communicate (or get along) with each other as any autist and NT pair. They try to study us as a unified group, but the only thing that truly unifies us is our diversity.

    Anyway, that’s all for my ramble. I’m sure I had a point when I first started typing, but I think I lot track of it somewhere.

    • Actually I think we do have things in common, but those things we have in common are actually the cause of the extreme diversity among us. In particular, we have differences in how our brains work, that cause us to sort of…. Argh I forget the words for it. We have limited resources, and those resources need to be spread out over different abilities. So each of us develops different patterns of good at certain things, bad at others. Some of us have relatively fixed abilities. Others have abilities that fluctuate by situation. And some of us have like one set of fixed abilities that we default to, but the abilities also vary by situation.

      And all of these things are adaptations to having certain limits on how much resources we have for different abilities. That’s the thing we have in common, but that exact commonality is what causes our extreme diversity. At least, that’s the easiest way to put my take on it into words. The real situation is much more complex. This is just simplified fairly easy to describe version. So it’s not that we don’t have things in common, but that our commonalities under the surface cause our diversity on the surface. There’s also diversity because the researchers over the years have been really confused about what we are and therefore over generations of built p confusion there’s a cause of diversity there too. I’ve described it better in other posts like “the fireworks are interesting”.

      • The ‘notify of follow-up comments’ feature appears to suck. And possibly be broken.

        There is definitely a commonality of root/cause, yes. I was more referring to the result of what shows on the surface and tends to get studied.

        We tend to be different frequently in a lot of the same things, which highlights a similar or same underlying cause, but the *ways* in which we are different vary a lot. As I said, most of the criteria seems to keep coming back to, instead of ‘displays x’ like many conditions, ‘displays any variation of x that NTs don’t’.

        Clearly there are commonalities somewhere along the line, or it wouldn’t all be considered the same condition. My point was just that it adds to the difficulty of studying autism because most people seem to think of it as a condition in the way many others are, with one defined set of symptoms and few variations. A lot of people seem to miss the fact that it’s more like a mix-and-match grab-bag of possibilities – at least on the outside, where they’re trying to observe it.

  3. after reading this, i’m feeling that being so tied to words i’m really missing something. i always show people your article how reality is so infinite and everybody is missing something. so i knew that intellectually, but this just put a missing piece (sorry) of lightbulb going off feelings.
    but when i am with dh and he doesn’t have words and i need words from him, it’s kind of painful. if i could do the not words thing, it would be better and i wouldn’t be missing something. of course the most personal example first, but missing a lot more with a lot more others as well.

  4. As a non-verbal child with a hyperlexic flavor of Autism I could relate to much of what you write here. Perhaps you can relate to the post below, too. :)

    It is worth noting though that many people currently diagnosed on the spectrum with language development delays and developmental regression do not have the same advantages of people with a hyperlexic language delay or speech regression in navigating their world through patterns and coding symbols, including the non-verbal language of others.

    http://katiemiaaghogday.blogspot.com/2013/04/autism-and-nautilus.html

  5. Pingback: Amanda Baggs: A Bunch of stuff that needed saying | Autism Positivity Day Flash Blog

  6. I appreciate this post, and it’s a vital reminder that needs to be brought up again and again in the parts of the autistic community that I’ve been around. I don’t even try to count how many times some autistic people will invoke the idea of a segment of the autistic population who are supposedly completely and utterly incapable of any communication and thus should not be allowed self-determination – this is brought up in many kinds of arguments (cure debates are a common one) but you’ve probably seen that more often than I have.

    I can relate to some of what you say about the nonverbal communication as well, but I feel like I could get stuck in endless anecdotes. Mostly I can say that “In My Language” was probably the catalyst for me in understanding that I am autistic, and to some extent it’s because the video itself made sense to me. I appreciate what you say because it is so important and so often neglected or even actively excluded by others.

    It’s frustrating to so frequently see other autistic people assign value or agency to other autistic people on the basis of how they communicate, or whether they communicate in “accepted” ways.

    Also, as far as nonverbal communication goes, I am terrible at the various tests that test this, but I find I am fairly good at picking up emotions, guessing when someone is hiding something or lying to me, and sometimes determining their actual motives. In some situations in the past I have guessed information about social interactions that the people involved swore vigorously that I could not have known without someone explicitly telling me. I’ve sort of been going over this with my therapist, and I’ve tried to find some way to explain it because it is not the way NTs do things, but there are many situations where it doesn’t help me much, either.

  7. I seem to have found some additional support for the fact that autists can read emotion, just in a different way.

    http://www.newyorker.com/online/blogs/culture/2013/02/anne-hathaway-in-defense-of-the-happy-girl.html

    Who else here thinks that choosing that picture for that article is a disaster? Because that’s not a happy face, people. It’s really, really not. And the article makes it pretty glaringly obvious that the writer thinks it is. An ecstatic one, in fact. Definitely not despairing/terrified, which is more what I’d take it for.

    Not every face with a smile is happy. Aren’t they supposedly meant to be better at realising that than we are?

  8. The assumptions we concoct upon meeting a disabled person, regarding his or her abilities to accurately understand, comprehend, derive meaning, etc. almost invariably occur in an instant … the instant we see, or sense, they’re disabled. These assumptions are based on nothing but a wildly false first impression. Then we impose or apply our impression with an absolutism, or totality, also based on nothing. These impressions are immediately cemented in our minds and very, very rarely, if ever, change and remain beliefs we never question or reconsider. These assumptions always drastically minimize the disabled person’s awareness and understanding of everything within his or her world …. the people, activities, environments … everything. These assumptions ARE ALWAYS wrong.

    And I’m not talking about these being the assumptions of the general public … I’m referring to people like me, who’ve worked for years with developmentally disabled people … I’m referring to the parents and siblings of disabled people, and often, disabled people themselves. Our extremely narrow, restricted, dismissive, dehumanizing opinions of the understanding others are able to achieve is conveyed, by us to those with whom we work, in every conceivable manner … a thousand unmistakable ways … every single day.

    I am trying to teach this stuff to staff, and it is not easy. I think, people simply don’t believe me … for a lot of different reasons. I try to explain that human brains are designed for social understanding … to understand other human brains … and we do this in all kinds of ways, in which language plays a relatively small part. The brain, we know, has great plasticity … when one part doesn’t perform in the way it was meant to, our brains typically re-wire or restructure themselves to accomplish the same thing in other ways or by using other parts to accomplish the same task. A disability that effects, to one degree or another, an individual’s capacity to comprehend words, or difficulty with receptive language, does not necessarily affect the individual’s capacity to understand accurately the meaning of what’s being communicated.

    An obvious example of how we can accurately assess meaning, in spite of words, is to think of being in a theater with 2000 people … sitting as far from the stage as possible … let’s say, in the back row of the balcony section. A performer could take the stage and pick up a microphone and, in a matter of seconds, everyone in that theater would know that the performer is someone suffering from extreme stage fright. The performer could being saying things like, “Good evening … I am so happy to be here tonight. Over the years, I’ve played here several times and I just love performing on this stage … I’ve never felt more comfortable, never felt more at home than I do right now …” etc.etc.

    Everyone, absolutely everyone in the theater knows that his words mean nothing … that they express the opposite of what’s really going on. And we would all know this instantly by the SOUND of his voice, by his hesitancy, his gestures and movements, and any number of other, very clear, very obvious cues. So much for the intrinsic value of words. Yet, with disability, in general, and cognitive disabilities in particular, we assume if someone seems only to understand a very few words, they must also only understand a very few things about what’s going on around them … or about the people around them … i.e. “…if they can’t understand to simple directions, how the hell can they understand a subtle shift in the tone of voice?”

    I can’t explain why, but I know beyond any doubt that they do. I’ve seen it, many, many times. Absolutely everyone understands sincerity, everyone understands respect, everyone understands honesty, etc. …and everyone understands the opposites, when expressed to them in tone, in the time we give, the manner and nature of our expressions and interactions, and on and on and on.

    I tell staff that those we work with have far less need for our kindness and compassion (which is better than our abuse and cruelty, of course) when compared with the desperate need they have for our sincere respect and the strong sense of equality. I’ve seen the effects and impact these have … and I could go on about it forever …

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