Comments on: In My Language

In My Language

maudlin — Thu, 25 Jan 2007 09:13:08 -0800

"My language is not about designing words or even visual symbols for people to interpret. It is about being in a constant conversation with every aspect of my environment, reacting physically to all parts of my surroundings." [more inside]

By: maudlin

maudlin — Thu, 25 Jan 2007 09:14:58 -0800

This is a fairly long video (8:35), and the opening 5 minutes in her language (which, as someone on YouTube says, sounds like Sigur Ros) may fascinate you or weird you out, but hang on until 5:20 when she starts her translation. Another excerpt: "Far from being purposeless, the way that I move is an ongoing response to what is going around me. Ironically, the way that I move when responding to everything around me is described as being in a world of my own. Whereas if I interact with a much more limited set of responses and only react to a much more limited part of my surroundings, people claim that I am opening up to true interaction with the world." Her YouTube index of films is here. Her personal site is here.

By: jouke

jouke — Thu, 25 Jan 2007 09:21:10 -0800

The question is of course wether you can call the sounds that she makes a 'language' in any meaningful way. This is a point where de decades of chomskyan linguistics research might be useful: if it's a genuine language it will have to reflect the universal grammar structure. When that has been identified start mapping it to a semantic representation. If that's not possible it's not a language.

By: elpapacito

elpapacito — Thu, 25 Jan 2007 09:25:15 -0800

That is so fascinating I don't believe what I have seen quoting from her blog

I did that video “In My Language” that I posted recently. I’ve gotten some interesting responses. Several people said their autistic children (and one non-autistic sibling) wanted to watch it over and over again. One of them had a son who never hums at all, but hummed the tune from the video all day after he watched it. Others hummed along too. The parents described their children’s reactions as interested, mesmerized, and transfixed. This is a common reaction between autistic people, I’ve noticed. We do have ways of communicating with things around us that are mutually comprehensible for many of us (not all of us, and not all the same things are comprehensible, there seem to be groupings in that regard). Our interests and our reactions are not random, purposeless, or useless, and are certainly not ugly things to be hidden away or trained out of.

By: j-urb

j-urb — Thu, 25 Jan 2007 09:30:21 -0800

which, as someone on YouTube says, sounds like Sigur Ros Its true!!

By: dobbs

dobbs — Thu, 25 Jan 2007 09:32:42 -0800

Thanks for posting this. If that's not possible it's not a language. So... you didn't understand the video, is what you're saying.

By: tadellin

tadellin — Thu, 25 Jan 2007 09:35:49 -0800

Press 1 for English, dos por Espanol, &4$*$$* 58 Yuu gh gopug mmmmmm Sorry.

By: DenOfSizer

DenOfSizer — Thu, 25 Jan 2007 09:46:18 -0800

Well, I don't necessarily subscribe to Universal Grammar, but it might not be a language if it's understandable only by one person. But it's language-like, and definitely fascinating nevertheless.

By: dmd

dmd — Thu, 25 Jan 2007 09:51:28 -0800

Holy crap. I went to college with her, 1994-1995.

By: dmd

dmd — Thu, 25 Jan 2007 09:55:18 -0800

And I was with her when she went into a hospital for the first time - I was the one who made the phone call. She ... self-medicated? with LSD from February to May, almost nonstop, though the sheer quantities involved weren't really appreciated by most of us around her.

By: billysumday

billysumday — Thu, 25 Jan 2007 09:57:07 -0800

The world isn't against her, as she seems to believe.

By: languagehat

languagehat — Thu, 25 Jan 2007 09:59:54 -0800

Extremely interesting—thanks for the post.

By: Astro Zombie

Astro Zombie — Thu, 25 Jan 2007 10:04:19 -0800

This is not a look-at-the-autie gawking freakshow as much as it is a statement about what gets considered thought, intelligence, personhood, language, and communication, and what does not. She should stick to her first language.

By: Miko

Miko — Thu, 25 Jan 2007 10:09:02 -0800

What interests me is how similar this performance is to certain elements of shamanistic rituals. The droning vocualization (which is actually kind of tuneful), the repetitive motions, the rhythm and sound and inclusion of the properties of various inanimate objects. Sometimes people theorize that spiritual/religious paths in pre-industrial societies functioned partly as a means to channel the energies of people who thought and acted differently. "However the thinking of people like me is only taken seriously if we learn your language, no matter how we previously thought or interacted." This may be true, but if so, it's just because this she has accurately described the universal human condition. On some level we are all ineffable beings, truly individual in feeling and perception. Communication with other human beings does require the development of and participation in a common language. That is exactly why autism is constructed as a disorder. Does anyone have a guess as to what people she sees as being 'tortured and dying' because they are considered 'non-persons?'

By: Listener

Listener — Thu, 25 Jan 2007 10:12:30 -0800

one of her favourite videos You don't think the world is against her? The bulk of the world is against anyone who looks or acts different or takes time on something not socially acceptable. Her playing with the water and rattling the paper and that wire ring drove me nuts, but I wouldn't judge her for it or try to keep her out of my neighbourhood. Or, link from her site, suggest liberal application of medication which she obviously disapproves of.

By: jimmythefish

jimmythefish — Thu, 25 Jan 2007 10:13:26 -0800

First part Sigur Ros, second part Radiohead.

By: dmd

dmd — Thu, 25 Jan 2007 10:14:43 -0800

For anyone interested, volumes-worth of her writing may be found by searching Google Groups for nightsng@netcom.com or "Galiganinda Dulin".

By: dmd

dmd — Thu, 25 Jan 2007 10:15:55 -0800

and I die inside a little bit for refering to usenet as 'Google Groups'

By: jimmythefish

jimmythefish — Thu, 25 Jan 2007 10:27:00 -0800

Seems to me like she doesn't have a very good grasp of the way people perceive her. How can someone so obviously and extremely socially impaired provide any insight as to their position in a larger societal context? Correct me if I'm wrong - I don't mean to cause offense. It does seems to me that she's not so much different in terms of her interaction with the environment as simply impaired socially - maybe an obvious statement here. She therefore places a high degree of importance to internal thoughts and personal experience which we all have but which we fit within a 'normal' social behaviour and which we understand implicitly. Non-autistic people enjoy sensory experience as well but don't define ourselves through it in such an explicit way. I don't think that many people would see her as less than human, for example, as she suggests.

By: OmieWise

OmieWise — Thu, 25 Jan 2007 10:36:18 -0800

Ian Hacking, a truly great historian of science, had a good review in May, in the London Review of Books, of some books by autistics and about the general state of knowledge about autism. Miko writes "On some level we are all ineffable beings, truly individual in feeling and perception. Communication with other human beings does require the development of and participation in a common language. That is exactly why autism is constructed as a disorder. " This is as good a precis of Jacques Lacan's views of why communication is so fraught with difficulty (that tension between universal and unique), and why language is at the root of our psychic and emotional experience. Nicely put. I've not had a chance to view the video yet, but I'm always skeptical when the term "language" is applied to individual experiences. I can't wait until I'm at a computer where I can see this.

By: frecklefaerie

frecklefaerie — Thu, 25 Jan 2007 10:40:52 -0800

You could but a basic Paso Doble [youtube] to what she sings.

By: scottreynen

scottreynen — Thu, 25 Jan 2007 10:45:09 -0800

Well, I don't necessarily subscribe to Universal Grammar, but it might not be a language if it's understandable only by one person. Yeah, and she didn't really do anything to show it's understandable by anyone else. That I can't understand her doesn't make it not a language, but calling it a language without demonstrating any ability to communicate also doesn't make it a language. She talks about how "our" communication is restricted to a subset of our environment, as if this is a bad thing. But I have no problem proclaiming that communication with people is more important than communication with any other known thing in the world. I certainly value people above water or whatever else she was communicating with in the video.

By: arcticwoman

arcticwoman — Thu, 25 Jan 2007 10:45:41 -0800

Quick sidetrack - is there a name for the particular blocks that she is interacting with at 6:15?

By: nzero

nzero — Thu, 25 Jan 2007 10:52:09 -0800

By: MythMaker

MythMaker — Thu, 25 Jan 2007 10:53:39 -0800

Lately, I've been very interested in these questions of the rights of autistics. Here's a really interesting podcast talking about the collaboration between a Doctor and an autistic who are trying to get people to rethink how they see autism, seeing it not as a disease but as simply a cognative difference. An article that I found interesting was this one, which argues that autism is, at least partially, a social construct. This Slate review argues that there is, in fact, no autism epidemic. And if you're interested in the point of view of autistics, and others on the autistic spectrum (like Asperger's), then this forum on wrongplanet.com, which is full of conversations between people with Asperger's and autism, is really eye opening, particularly the way that the see themselves as being a repressed minority.

By: damnthesehumanhands

damnthesehumanhands — Thu, 25 Jan 2007 11:02:27 -0800

Nzero, I don't believe she's saying that she could survive as well as you in the hunter-gatherer sense. I think what she's saying is that she is of no less intrinsic value as a person because she perceives and interacts with the world in nonstandard ways. Then again, maybe I'm completely off-base.

By: MythMaker

MythMaker — Thu, 25 Jan 2007 11:04:22 -0800

No, that's exactly what she's saying.

By: nzero

nzero — Thu, 25 Jan 2007 11:05:39 -0800

Which brings us to the question of where the "intrinsic value" of a person comes from, which I have a feeling we will not agree about.

By: hal9k

hal9k — Thu, 25 Jan 2007 11:15:27 -0800

You would have a hard time getting crops to grow or catching an animal to eat by humming to yourself and waving your arms around. Funny you should say that. My son is a miniature Ted Nugent with bow on a 50lb. draw. His entire wardrobe is camouflage (all flannel- tags ripped out). He dreams of his next pheasant hunt. He has a hard-time sitting down for any length of time but with something in a sight, he's rock steady and dead-aim. I gave up hunting when I was 18. He just grabbed on to it. He goes to a small school that encourages mixing the entire autism spectrum with "typicals" (the latter including my other two kids). While it is an experiment in the larger sense of an education model, it has worked wonders for his social growth. And with one teacher per seven students - most in the process of getting their advanced degrees - all three kids are getting a terrific education.

By: LooseFilter

LooseFilter — Thu, 25 Jan 2007 11:17:46 -0800

This was very interesting, but I too must question her assertion that what she's demonstrating on the video is a language. Interaction with one's environment, however rich and/or meaningful, does not equal communication. Language exists for human beings to communicate with one another. If a system of sounds/gestures/etc. fails to communicate, to convey meaning to another--while it might be very expressive for the person making it--it isn't a language in any meaningful sense. What is fascinating to me about the video is that she is, in fact, opening up her perceptual world a little bit to people with normal consciousness--but it's only opened up because of the regular, linear English-language narrative that's added to it. Without that, my experience of that video would have been very different, and I would have understood little of what she was experiencing.

By: MythMaker

MythMaker — Thu, 25 Jan 2007 11:20:26 -0800

So, if you can't communicate with someone, they have no intrinsic value? "Never to lose sight of the intrinsic value of every human being. To protect, to care, to save, to give shelter and to give a voice. Not for our own sake. But for the sake of humanity."

By: LooseFilter

LooseFilter — Thu, 25 Jan 2007 11:22:07 -0800

Also: dmd, I'm very interested to hear a little more--why so much LSD? If her consciousness is already tuned into a much wider sensory world, what on earth kind of effect did LSD have?

By: elpapacito

elpapacito — Thu, 25 Jan 2007 11:22:10 -0800

You would have a hard time getting crops to grow or catching an animal to eat by humming to yourself and waving your arms around. This person is completely dependent on the society at which she directs her condescending attitude, and it so happens that society uses "our language." She states in her blog that she has got problems with the mechanics of language, that is vocalizing a sentence. If I took anybody here and landed them in , for instance, China..you would have an hell of a time using your vocalizing skills, you would probably use mimics. She can't use mimics as much either as it seems that part of her movements aren't under her persistent control. To her her movements and interactions with objects, her humming and other actions that seem totally meaningless to us are meaningful , even if they don't convey particularly complex concepts or any concept at all. They convey SOMETHING...maybe the correct word is "resonance" ; pardon my superficial understanding of physic, but objects may have a particular resonance frequency and if solicited at the right frequency (or range thereof) they start vibrating. By analogy of effects, maybe certain stimuli cause a resonance in her mind , even if she only aware of "something"...think about a Deja Vu that one can't understand, but that is usually quite vivid in mind...there is no symbol (ah the madelines) there is no particular meaning (or sometime is attributed to madeleines :) yet the feeling of Deja is very "real".

By: doctor_negative

doctor_negative — Thu, 25 Jan 2007 11:24:33 -0800

That was interesting. I had all of those behaviors when i was a kid, and I've (sort of) learned not to do them anymore. I am still a die hard finger-tapper, I can't sit actually still and I sing to myself when no ones around. I definitely understand the "words are a secondary language" idea, I'd pretty much come to the same conclusion.

By: LooseFilter

LooseFilter — Thu, 25 Jan 2007 11:28:42 -0800

So, if you can't communicate with someone, they have no intrinsic value? I'd have to reread the thread a little more closely, but that sounds like a strawman--I don't recall anyone asserting any such thing. Saying that you can't communicate with someone means only what it says: that you are currently unable to communicate with them. I would think it quite fascinating to try and communicate with individuals whose consciousness is so different from my own, to try to comprehend how they experience and think about the world. Which is, of course, what many autism researchers are on about. But observing the reality of whether or not I can communicate with another individual implies nothing about their value, intrinisic or otherwise.

By: localhuman

localhuman — Thu, 25 Jan 2007 11:33:34 -0800

3000 years ago, an autistic person would have been regarded as the village sage.

By: dmd

dmd — Thu, 25 Jan 2007 11:34:26 -0800

Nightsong (as she called herself then) was, back then, thoroughly convinced that she had Dissociative Identity Disorder. She wrote long descriptions - which I only wish I had permission to share with you all - brilliantly written stories of the elves and fairies inhabiting - or comprising - her selves. I think one of the things self-medication did for her was reify her inner world - i.e., it caused her world of perception to better match her world of cognition. If you knew you were surrounded by elves, wouldn't you feel better if you could at least see them?

By: TheOnlyCoolTim

TheOnlyCoolTim — Thu, 25 Jan 2007 11:34:42 -0800

Reminds me a lot of the bullshit you hear from some people when they trip on psychedelics - being "connected with the universe," communicating with trees, etc.

By: MythMaker

MythMaker — Thu, 25 Jan 2007 11:47:10 -0800

It's not a strawman, it's a response to: Which brings us to the question of where the "intrinsic value" of a person comes from, which I have a feeling we will not agree about. Which was a reaction to: Nzero, I don't believe she's saying that she could survive as well as you in the hunter-gatherer sense. I think what she's saying is that she is of no less intrinsic value as a person because she perceives and interacts with the world in nonstandard ways. My point that a human being's intrinsic value has nothing to do with how well they communicate or are able to gather food. It is something that every single human being has. To say that some people have less value because they cannot communicate in a mainstream way is, IMHO, a kind of bigotry. I think everyone has value.

By: Listener

Listener — Thu, 25 Jan 2007 11:56:42 -0800

By tortured and dying she means psychiatric abuse I infer from this post of hers.

By: solistrato

solistrato — Thu, 25 Jan 2007 12:13:36 -0800

My point that a human being's intrinsic value has nothing to do with how well they communicate or are able to gather food. That's right. A human being's intrinsic value has everything to do with whether or not you know me. I'm not entirely sure "language" is the best term to describe what's going on here; there's definitely an internal grammar happening, but whether or not it could be translated, or if someone else could learn this grammar and use it themselves, is open for debate. What is most interesting, to me, is the animistic aspect of the video, in that the language is not for us, but for the objects she interacts with. Probably stating the obvious, but what the hey.

By: solistrato

solistrato — Thu, 25 Jan 2007 12:14:22 -0800

To amend: I mean "translated by someone else," since she obviously translates for us in the video.

By: MythMaker

MythMaker — Thu, 25 Jan 2007 12:20:54 -0800

I'd argue that everyone has equal intrinsic value because we (i.e. mankind) keep agreeing publically that we all do.

By: MythMaker

MythMaker — Thu, 25 Jan 2007 12:23:33 -0800

But I like your observation, solistrato, that she's communicating with the objects, not other people. That's one of the central things about autistics, apparently. THINGS are more of a focus to them than other people are. And it is animistic. We used to have shamans and medicine men. Now we have schitzophrenics and autistics.

By: Brainy

Brainy — Thu, 25 Jan 2007 12:33:49 -0800

I was actually just thinking the other day about Flow and how it relates to Autism. A quick google brought up nothing immediately, but this has inspired me to look again.

By: OmieWise

OmieWise — Thu, 25 Jan 2007 12:37:59 -0800

MythMaker writes "We used to have shamans and medicine men. Now we have schitzophrenics and autistics." I tend to see this as a very dangerous way of thinking. Firstly, there's little evidence for it. All of the anthropological stuff I've read about present day tribal cultures that still have shamans and medicine men hasn't described those people in anything like a way that would indicate a neurological or psychological condition. Secondly, I think that suggests far too much that these folks are simply a bit too far to one end of an established cognitive spectrum of normalcy. That doesn't appear to be the case. I read some of the link about the "social construction" of autism, and it while there were good points, I think in general the author underplayed the extent to which "normal" has always been a pretty narrow range, and with good reason. Thirdly, simply putting these folks out on the spectrum like that risks downplaying the real sense of pain and anguish that accompanies these two conditions (including schizophrenia per MythMaker). An autistic tantrum isn't an expression of wonder at the inanimate world, it's a painful reaction of frustration and (in many cases) terror. Similarly, the rates of suicidality in people with schizophrenia are quite high. I wanted to make another comment on this woman, whose blog I've read a bit of now (still no movie for me), and mention again the Ian Hacking article I linked to. One of the most interesting parts of that article was that he referred to people like this women as "recovered" autistics, since part of his understanding of the working definition of what he calls "core autism" is that someone with the disorder cannot, by definition, provide this level of insight into it.

By: StickyCarpet

StickyCarpet — Thu, 25 Jan 2007 12:42:39 -0800

I found the book There's a Boy In Here to be a much better example of translating between autisic and neurotypical perspectives. Having recovered somewhat, or at least improved his communication, the autistic son gives his perspective on events and behaviors his mother relates. Some of the inexplicable things he did make a kind of sense in retrospect when he explains himself. In general, he was much more present and concsious in his experience than his mother ever imagined.

By: [expletive deleted]

[expletive deleted] — Thu, 25 Jan 2007 13:13:09 -0800

Judging from the dedication to "Ashley X" in the credits, it seems that this is in part a political statement about society's treatment of people considered non-communicative. In the blog, she is more explicit, and challenges the notion that this behavior should be considered “purposeless,” “pointless” or “harmful.” In this respect, I think the blogger is making a serious mistake of extrapolating her experience into circumstances that may be completely different. I disagree that what we see in the first 5 minutes of this video could be called "language" in any conventional sense. To define language as something that doesn’t necessarily contain symbols or grammar is to define it out of existence. This is not to say that it is always the result of some kind of defective or invalid cognition, or that it is without value to her and others. What I can say though, is that this kind of behavior is not something that should be encouraged or even allowed to continue untreated in certain circumstances. The first half of the video is not something that I am unfamiliar with. My ten year old brother is autistic and shares many of the idiosyncratic behaviors seen therein, specifically what we call “stimming”, when he holds his hands beside his head and moves in a rocking motion. For my brother, this behavior is often accompanied by very repetitive speech or quite frequently laughing or crying. When my brother finds something especially funny, he might laugh and repeat it to himself and others for hours, accompanied by this behavior. During this perseveration, his mind moves in a more or less closed loop of thought from which it is hard for him to escape. This often happens when he gets upset, often over a minor inconvenience. For instance, he once missed the theme song to a show that he particularly likes. Normally, he would let out a disappointed sigh and settle down to watch the show, but this time he began to perseverate. He began to scream and cry, accompanied by stimming and repeating over and over again between sobs that he had missed the theme song. Often, when he is being less vocal, we can only guess at what is making him perseverate unhappily. My brother is fully aware of what he is doing, but he often can’t control this behavior. Even when perseverating on something happy he can become frustrated that, as he puts it, “my brain won’t stop”. Often, when this frustration is particularly acute, the emotional distress will cause him to perseverate on his frustration at not being able to stop these thoughts and the behavior that accompanies them. This kind of vicious cycle can last for hours, and is obviously a source of profound unhappiness for him. My brother would like to be able to stop his thoughts from running away in this manner, and clearly articulates this desire. The woman who made this video clearly sees value in her way of interacting with her environment and believes it to be a perfectly valid way of communicating. While I wouldn’t call it language, I’m not going to dispute its value, and I think that it likely is mutually intelligible for a large subset of the autistic population. What I do dispute is her implicit attempt to universalize this to all autistic people, or in the case of Ashley X, “everyone else who’s ever been considered not thinking, not a person, not communicating, not comprehending, and so on and so forth”. In her blog, she also dedicates the video to “people like Bryna Siegel who claim that the way we move is automatically purposeless, pointless, harmful to our development, and can be eliminated with no cost to us (but may be able to be used as a “reinforcer” in controlling other things we do).” In making her point, she ignores cases where this behavior is pointless and harmful, even from the perspective of the person doing it. Watching the video, I initially reacted with interest, since this is something that I believe I have some small insight into, and I would like to understand it more. What set me off on this rant was the dedication. The point she’s making here, in conflating her situation with Ashley X is completely nonsensical. I don’t understand how someone as clearly thoughtful and intelligent as she is could conflate her situation with that of someone whose brain has not developed in any way since infancy. This strikes me as another example of the knee jerk reaction to the Ashley case that sees this as an assault on the rights of all disabled people. I know I can’t really understand her situation, but I don’t see how Ashley’s treatment is somehow a threat to the rights of autistic people. I wonder if her mistrust of the medical establishment—which may be justified by her past mistreatment—has lead her to conclude that medical science is never capable of accurately assessing someone’s mental condition. This is not to say that I disagree with her entirely. I think that she certainly makes some good points on her blog, especially regarding the gross misuse of neuroleptics, which I doubt have any real utility for the vast majority of autistic people, and have significant potential to do serious and sometimes permanent harm.

By: languagehat

languagehat — Thu, 25 Jan 2007 13:13:37 -0800

But I like your observation, solistrato, that she's communicating with the objects, not other people. Actually, that was her own observation in the video. It's interesting, in a sad way, that some people's reaction to this is to find ways to put her down rather than to learn something about what her mental life is like. And yes, everyone has equal intrinsic value. If you don't accept that as an axiom, you're headed down a bad road.

By: elpapacito

elpapacito — Thu, 25 Jan 2007 13:16:23 -0800

Maybe what is overlooked is a bias. People who are very articulate , talking a lot and very sociable may appear to be more intelligent or more interesting than so called "introverted" people In general, he was much more present and concsious in his experience than his mother ever imagined. Haven't read the book, but after a series of apparently repetitive "inexplicable" acts, maybe the mother come to the conclusion his son was detached or not understanding or somehow stupid. I have known a very timid person for years and I witnessed a quite "rare" event , the transformation of this person from an extremely introverted person in a rather extrovered, easy going (not manic) person. As we live close to each other we fast become friends due to common interest (a real door to timid persons) and I can't _imagine_ him being like he is now. Every now and then he still , btw, behaves as if he was struck by a lightning, rendered speechless by for instance, the presence of a very beautiful woman. He says that even today he still suffers from what he calls "emotional busts" that were a lot more frequent in his past. As he is quite an articulate and interesting person he has become a sight to behold in his extremely confident, but suave display of attention, interest, competence. So maybe we should check our bias a lot more often and dispel the myths that malfunctioning in a context = constantly malfunctioning.

By: [expletive deleted]

[expletive deleted] — Thu, 25 Jan 2007 13:24:12 -0800

To balance out my previous criticism, this is a fantastic post. It entirely explains why she feels like society treats her as less than human, and I can't say I blame her. I'm going to be reading her blog on a regular basis from now on.

By: Miko

Miko — Thu, 25 Jan 2007 13:31:45 -0800

All of the anthropological stuff I've read about present day tribal cultures that still have shamans and medicine men hasn't described those people in anything like a way that would indicate a neurological or psychological condition. This is a good point. Since the theory pops up quite a bit in discussions of communication disorders, it would be very nice to see an accessibly-written article that challenges that notion. Haven't time to look now, though. But it still interests me that, whatever the underlying reasons, behaviors like the ones in the video are certainly similar to some ritualistic practices - even present-day ones. Perhaps that is more important as a window on ritual activities that require pre-communicative or non-communicative behaviors than as evidence that pre- or non-communicative people are specially marked for ritual. I agree with what OmieWise says about this condition (and perhaps other/similar ones) being frustrating. I understand why someone with a communication disorder might want to argue that their experience is merely different from others', and not worse, or to be negatively evaluated. And yet, in my limited experience working with various autistic-spectrum children under the age of 7, it was not social rejection of the disorder that was causing pain (these kids were from adept, loving families and enrolled in a pre-school like the one hal9k described); it was the anguish of the disorder itself. When some of the kids were agitated, their behavior was heartrending in its suggestion of total interior isolation, and some was self-injurious.

By: melissa may

melissa may — Thu, 25 Jan 2007 13:38:13 -0800

This person is completely dependent on the society at which she directs her condescending attitude... Condescension? I looked at her favorite videos as well, and found this, which documents the painfully inhumane way that the institutionalized disabled were treated in the US in the 1950s and well beyond. Certainly well within living memory. There are few of us who have not encountered the cruelty of institutional thinking, much less the social cruelty toward those classed as disabled or simply too weird to be tolerated. I don't hear the voice of condescension; what I hear instead is a woman strongly asserting her personhood despite it all. And all right already with the pedantry: she's obviously not using "language" as a linguist would -- she's deliberately trying to expand the category to a broader term, to include nonverbal communication with the sensory subtleties of her environment. She's clearly reacting to others' attempts to force her to control her stereotypies, which for her are not symptoms but her way of comprehending the world. She's hurt (and yes, angry) that people (no matter how well meaning) would attempt to do this without understanding their meaning to her. I'd call that true and harmful condescension, and her pained reaction to it justified. Here is another of her favorite videos, and the one that ultimately had the most impact on me. I imagine if she'd encountered more of that sort of loving affirmation and encouragement in her life her tone would be much altered. Thanks for the post, maudlin. I'm very glad to have seen it.

By: ericb

ericb — Thu, 25 Jan 2007 13:43:16 -0800

What interests me is how similar this performance is to certain elements of shamanistic rituals. That's the first thing that came to my mind. Her "language" reminded me of Native American singing and chanting.

By: melissa may

melissa may — Thu, 25 Jan 2007 13:43:42 -0800

And yet, in my limited experience working with various autistic-spectrum children under the age of 7, it was not social rejection of the disorder that was causing pain (these kids were from adept, loving families and enrolled in a pre-school like the one hal9k described); it was the anguish of the disorder itself. Yes, but this woman is not a child. Temple Grandin, one of the highest functioning persons with autistics in the public eye, has written extensively of her childhood and feeling lost inside the anguish her disorder caused. However, adulthood brought with it greater self-awareness, and the awareness of the social price of her disorder. So, there are two different forms of anguish here, and they influence one another to no small degree.

By: progosk

progosk — Thu, 25 Jan 2007 13:50:37 -0800

profoundly fascinated. thx maudlin.

By: MythMaker

MythMaker — Thu, 25 Jan 2007 13:54:26 -0800

OmieWise - I like the article you linked to: "Simon Baron-Cohen, the best-known British autism researcher today, has a research programme to investigate the extent to which the family trees of autists are made up of engineers, scientists and other abstract thinkers whose lives revolve around cold structures rather than human empathy. Baron-Cohen finds that what he calls ‘male’ as opposed to ‘female’ attributes, abstraction and distance from human relationships, tend to run in families with an autistic child. ... There is even a new movement afoot: we are all right, we are just different from you, we do some things better than you, you do some things better than we do." ^ It reminds me a little of The Geek Syndrome, published in Wired, arguing that engineer parents are much more likely to have an autistic child. There are those (I linked to a podcast earlier making this point) that argue that autism is more akin to speciation than a disease. It is a mutation that makes a person's mind work differently. In the most extreme cases, it is really quite terrible for the autistic involved. But, along the spectrum, there are many cases of people who have very rich inner lives, just little ability to communicate that with others. Perhaps it is like sickle cell anemia - where in some cases it is helpful - causing people to be engineers and thinkers, but in extreme cases causes people to have severe difficulties. As for your point that it's dangerous to conflate historical mystics with our present day definitions of mental illness, here are a couple links to get you started (I'm still looking for some autism specific stuff): Here's an article about temporal lobe epilepsy and how St. Paul, Moses and Mohammed are all consistent with the disease. Here are quotes from shamans who had experiences which we would call schitzophrenic.

By: nzero

nzero — Thu, 25 Jan 2007 14:19:21 -0800

MythMaker: I did not say that I assign human value based on ability to communicate, nor did I imply that. In fact, I didn't provide any indication as to my own views about where value comes from, except perhaps the quotations around the phrase "intrinsic value," so your argument was in fact a straw man. To everyone who said something like "all humans have equal intrinsic value": What defines a human in that context?

By: nzero

nzero — Thu, 25 Jan 2007 14:21:36 -0800

hal9k: You seem to have erroneously commuted my statement that waving ones arms around and humming would not produce food to the statement that being autistic or mentally disabled in some way precludes the production of food by that individual. That is patently not what I meant, nor what I said.

By: MythMaker

MythMaker — Thu, 25 Jan 2007 14:26:37 -0800

nzero - Which brings us to the question of where the "intrinsic value" of a person comes from, which I have a feeling we will not agree about. Where do you think the intrinsic value comes from? I say all humans have it inherently. I could quote Thomas Jefferson about human rights coming from our Creator, but, instead, I referenced the UN's Universal Declaration of Human Rights. As to what a human is... how about a living being born from other humans? i.e. all 6 billion of us on this planet.

By: nzero

nzero — Thu, 25 Jan 2007 14:30:03 -0800

MythMaker: Abortion? Terry Schiavo? I'm curious as to your opinions on these issues. I have no qualms about abortion, nor about pulling the plug on someone with a mental flatline. So, as "living beings born from other humans," how do they fit into your picture of human rights? Or are you opposed to those situations also?

By: nzero

nzero — Thu, 25 Jan 2007 14:31:04 -0800

MythMaker: Oops, forgot to answer your question. I believe intrinsic value of human beings comes from the ability of human beings to decide, as a group, that we have intrinsic value (as someone stated earlier in this thread).

By: Miko

Miko — Thu, 25 Jan 2007 14:40:59 -0800

You seem to have erroneously commuted my statement that waving ones arms around and humming would not produce food to the statement that being autistic or mentally disabled in some way precludes the production of food by that individual. That is patently not what I meant, nor what I said. Weeeeeelll, maybe not, but then it goes nowhere as an argument. My sitting here typing and reading a website recreationally doesn't produce food, either. Most of the things we do all day don't directly produce food. So we can't judge the worth of an activity in isolation from other activities.

By: OmieWise

OmieWise — Thu, 25 Jan 2007 14:41:14 -0800

MythMaker-Thanks for the links. The epilepsy connection is something I would not dispute, although I don't know a ton about it, it's always seemed plausible to me. The schizophrenia (just FYI, there's no 't') link seems interesting, but not really definitive. It contradicts other stuff that I've read. I'd be interested to see the book, though.

By: MythMaker

MythMaker — Thu, 25 Jan 2007 14:41:44 -0800

nzero - :) It was me that stated it earlier in the thread. I think you've derailed a little with Terry Schiavo, but her brain was gone (as shown in the autopsy), and it was right to turn the machine off. As for abortions, it's really a question of two different people's human rights, the mother's and the fetus'. They both have rights, it's just a question of which one trumps the other. But when we're talking about autistics, it's not really fair at all to compare them to Terry Schiavo. She was essentially dead, but her body was being kept alive with machines. Autistics are very much alive, and there's someone home. They can be intelligent, have feelings, have an inner world. So of course they should have equal rights.

By: MythMaker

MythMaker — Thu, 25 Jan 2007 14:52:18 -0800

OmieWise - Oops on the spelling. That's one of those words I ought to always spell check. Here's some more schizophrenia/shamanism links: Here's one from a Jungian therapy POV. Here's a scholarly article about it. Here's another. I find the epilepsy thing really interesting to explain some religious experiences, UFOs, etc.

By: Shutter

Shutter — Thu, 25 Jan 2007 14:57:28 -0800

That was impressive and thought provoking, thanks for posting it.

By: mobunited

mobunited — Thu, 25 Jan 2007 14:57:39 -0800

I have two stepchildren who are in the autistic spectrum. My desire to support their and other people's means of expressing themselves and living should not be situated as something opposed to giving them the skills to live independently. This woman is part of an activist community has had a destructive influence on our options to do just this in my own area (by lobbying against effective therapies) and assumes that by, say, wanting my younger son to develop he ability to eat independently (a skill he has yet to master; he cannot tolerate solid foods now, and needs supplementation to grow properly), I am a bad parent who is forcing "neurotypicality" on him -- by, y'know, wanting to help him survive his own childhood. In many cases, the stakes really are life and death. So my responses are twofold: 1) It is good for her to live the way she wants, without conforming to social expectations that are entirely separate from true functioning. 2) That in many other ways, she and her ilk should really fuck off, for making general statements on how a entire group of people with special needs should behave and how others should treat them, based on highly ideosyncratic anecdotal experiences. For example, she gets angry that people doublecheck whether or not she is doing the talking when she uses assistant to communicate, when the fact of the matter is that facilitated communication was shown to be bogus in many, many cases. I could do without this kind of narcissistic bullshit from people of all varieties.

By: Ogre Lawless

Ogre Lawless — Thu, 25 Jan 2007 14:58:00 -0800

And yes, everyone has equal intrinsic value. If you don't accept that as an axiom, you're headed down a bad road. I find that specious, languagehat. I'm saying this as a person who truly tries not to prejudge others. I don't mean to pee on the feelgood parade nor denegrate anyone's world views but I cannot agree with this sunshine statement. Granted, it would be nice if we all treated each other in such a manner but in my mind I can put a very large number of people on a greater than/less than scale in a very short period of time as could we all. Please convince me that your local crankhead is as of much value to the world as Jonas Salk and that you believe this to be true. An unsettling video for me in several ways. Good stuff.

By: jimmythefish

jimmythefish — Thu, 25 Jan 2007 14:58:09 -0800

Weeeeeelll, maybe not, but then it goes nowhere as an argument. My sitting here typing and reading a website recreationally doesn't produce food, either. Most of the things we do all day don't directly produce food. So we can't judge the worth of an activity in isolation from other activities. I agree. Modern, urban society is built around the specialisation of skills such that I'd argue that 99% of urban people would lack the necessary skills to survive on their own in the wilderness - even with the resources present to hunt, fish and farm sustainably. We simply don't know how. I'd argue that this specialisation and the resulting higher social functions beyond mere survival is what both supports people with disorders, people who are considered 'normal' but who wouldn't last 3 days in a survival situation, and also what gives us a quality of life unavailable to hunter/gatherers. These factors are inextricably linked. Don't anyone get on their high horse and assume that they're adapted to anything other than the modern environment in which we live - and this extends to people who are considered completely average in our society. We're all ultimately dependent on each other.

By: Ogre Lawless

Ogre Lawless — Thu, 25 Jan 2007 14:58:35 -0800

(perhaps substitute "value" as "worth while")

By: MythMaker

MythMaker — Thu, 25 Jan 2007 15:06:19 -0800

Ogre Lawless- I'd argue that everyone has the same intrinsic value, whether they are a crackhead or a genius. We all have value in and of ourselves. The question is more whether or not an individual has extrinsic value - how is that person valuable in relation to others. In this case, the criminal could be said to have less value, but this is subjective in their relationship to another. It's really a question of ethics. Ethically, I believe it is best if all human beings treat each other equally with respect.

By: jokeefe

jokeefe — Thu, 25 Jan 2007 15:06:58 -0800

The word "language" actually seems to have muddied the waters here... she also refers to her behaviour as a "kind of thinking", which I thought quite wonderful. She's not communicating in the language sense, she's communicating in a semiotic, artistic sense. She's continually making art through interaction with her surroundings. It doesn't necessarily have to "mean" anything, anymore than meditation does. Watching that video threw me right back to being three years old, and that intense focus on the objects around you. I used to do most of those behaviours too, and found them utterly absorbing-- especially the looping fingers around the drawer pull, or, in my case, staring at streetlights with my eyes half closed to drink in the changes in the light. But I don't think I'm necessarily autistic-- I think this might be how very young children, pre-language-- relate to and discover the world.

By: jimmythefish

jimmythefish — Thu, 25 Jan 2007 15:16:15 -0800

To add one more comment, I think that this exposes the inabilities, in some sense, for people of completely different realities to understand one another. Does it not make sense that someone with a social disability will not find the nuance in what a language is really supposed to do? Might it be conceivable that someone with autism might not make the distinction between communicating with oneself, communicating with the environment around her, and communicating with other people? The rest of us non-autisics make a big distinction between these things but, obviously, people with autism fundamentally don't recognise the importance of nuanced communication that the rest of us place on it.

By: jimmythefish

jimmythefish — Thu, 25 Jan 2007 15:17:33 -0800

...and please allow me to use the word nuance a few more times. Nuance.

By: MythMaker

MythMaker — Thu, 25 Jan 2007 15:20:51 -0800

Nuance.

By: Mental Wimp

Mental Wimp — Thu, 25 Jan 2007 15:45:08 -0800

I'm not sure "intrinsic value" is a meaningful term when we are talking about people. The value of an individual is not unidimensional, e.g., there is economic value, spiritual value, social value, sexual value, aesthetic value, etc. Which of these are intrinsic? All? None? We surely feel all people should be accorded the same rights, unless they intentionally do something to warrant modifying that (e.g., murdering another). Does this mean they are all valued the same? I don't think so. Back on track, I suspect most of us would figure out how to survive if dropped into a wilderness area with ample fish, game, and plants. Not so sure about a severe autistic. This, however, does not mean that a severe autistic has any less entitlement to self-determination, human dignity and respect, and beneficence. On the other hand, this condition does not sanctify what that autistic person says or does, especially assertions regarding other autistic people. I think we needn't suspend our critical faculties regarding larger questions because of the condition. That would be patronizing. On preview: to call making noises or gestures at an object incapable of perceiving them "communication" is an abus de langage.

By: CitrusFreak12

CitrusFreak12 — Thu, 25 Jan 2007 15:48:17 -0800

"But my 'language' is not about designing words or even visual symbols for people to interpret, it is about being in a constant conversation with every aspect of my environment, reacting physically to all parts of my surroundings. In this part of the video, the water doesn't symbolize anything, I am just interacting with the water as the water interacts with me." .... I'm sorry, but how is that "language" in any way, shape, or form?

By: tidecat

tidecat — Thu, 25 Jan 2007 16:00:14 -0800

Fascinating post and discussion. Thank you, Maudlin. ArcticWoman, the blocks you refer to are "pattern blocks." They are used for education in maths, etc. I just purchased some for my daughter from didax.com.

By: nzero

nzero — Thu, 25 Jan 2007 16:01:09 -0800

MythMaker: Again, you're misunderstanding me. I wasn't at all equating autistic people with Terry Schiavo (!!), I was attempting to show the flaws in your definition of human. More later.

By: MythMaker

MythMaker — Thu, 25 Jan 2007 16:14:23 -0800

nzero - I'm sorry if I misunderstood you. It's just for me, Terry Shiavo was, essentially, dead, and so it seems to be a totally unrelated question from how much we value autistics, who are very much alive. Of course there are nuances (that word again!) when it comes to humans, and who has rights. I generally feel we ought to be as generous and broad with our recognition of our fellow humans' rights as possible, that's all. It is very interesting to me, however, the difference in reactions of people on here to this video. Some people seem really put off by her style of communication, and dismissive of her plea - while others seem to be more empathetic to her position and interested in seeing her (very different) point of view. Not that I'm being judgemental, mind you (well, maybe a little), but it really is a very interesting dichotomy.

By: jason's_planet

jason's_planet — Thu, 25 Jan 2007 16:16:59 -0800

And yes, everyone has equal intrinsic value. If you don't accept that as an axiom, you're headed down a bad road. languagehat, what exactly do you mean by this? Does this mean that I should befriend everyone, that I should not, for example, place the needs of a spouse or a child ahead of, say, the needs of the neighborhood sociopath who spends his day freebasing, conning strangers and beating his girlfriend?

By: jokeefe

jokeefe — Thu, 25 Jan 2007 16:26:29 -0800

Does this mean that I should befriend everyone, that I should not, for example, place the needs of a spouse or a child ahead of, say, the needs of the neighborhood sociopath who spends his day freebasing, conning strangers and beating his girlfriend? Honestly. It means that all of us, from crack-dealing girl-friend beating sociopaths to the best and my heroic of us has the same abstract worth as an individual human being. That worth plays out in society and in our lives in different ways, so that the heroic are of more worth to society and the crack-smoking etc. are more on the liability side, but each one has, for example, equal human rights before law and equal claims to justice. It's abstract, and it's important. It's why you don't just shoot the crack dealer, even though he's destructive to his social circle and destablizing to his community. It's why he gets to go to court and, theoretically, will receive the same wise justice meted out to his better, more productive peers. Obviously this doesn't work in practice, and you can think of dozen examples off the top or your head, I'm sure. But the principal of the thing-- that's what's fundamental, and fundamentally important.

By: silence

silence — Thu, 25 Jan 2007 16:41:39 -0800

sorry to probe even more DMD, but if you knew her back then, perhaps you can offer some insight into the really bizarre "stalker" arguments that seem to be going on in the comments and in this post. I found "silentmiaow"'s video fascinating, but then when I discovered the weird copycatfight and "I'm more autistic than you" competition going on it was even more intriguing - please settle the issue - I need closure !

By: languagehat

languagehat — Thu, 25 Jan 2007 16:45:46 -0800

Well said, jokeefe. Thank you. Please convince me that your local crankhead is as of much value to the world as Jonas Salk and that you believe this to be true. You've missed my point. It is obvious we can all think of people who do not seem particularly valuable. That is precisely what makes it possible for people in power to convince lots of people that certain groups of people are inherently less valuable and should not be given the same rights as valuable people. It is that road that I was talking about. If you do not understand what I mean, I can bring up some specific history, but I really shouldn't have to.

By: MythMaker

MythMaker — Thu, 25 Jan 2007 16:54:13 -0800

The history in question would Godwin this discussion, frankly.

By: jokeefe

jokeefe — Thu, 25 Jan 2007 17:03:50 -0800

Thanks LH; wish I'd proofread for typos, but nevermind. I've been reading the circle activist blogs linked to silentmiaow's blog, BallastExistenz, and it's made for an interesting afternoon.

By: aoxomoxoa

aoxomoxoa — Thu, 25 Jan 2007 18:33:51 -0800

I have an autistic daughter and i do behavior intervention and ABA with autistic children. I think it is a matter of definition of "language". To me, she seems very tactile and if you want to call her response to stimuli a language, then I couls see it that way. They say body language makes up a large part of our communication, so autism may make the body language different, it is still body language. Someone asked earlier about the blocks, they are part of a tmpanogram.

By: jason's_planet

jason's_planet — Thu, 25 Jan 2007 18:52:37 -0800

(Just as an aside, this is a fucking awesome FPP. It raises some very important issues, it has introduced me to some web material that I never would have discovered on my own and it's sparked a great set of discussions. Thanks, maudlin!) It means that all of us, from crack-dealing girl-friend beating sociopaths to the best and my heroic of us has the same abstract worth as an individual human being. That worth plays out in society and in our lives in different ways . . . but each one has, for example, equal human rights before law and equal claims to justice. Yeah. Makes sense. But when I reflect on your choices of words, the ideal of equality sounds like a fragile legal fiction that we have to promulgate in order to have the society and values that we have now. In the absence of such values, human beings revert to their default setting, which is forming hierarchies of worth, which in turn leads to the kind of society that Cormac McCarthy wrote about in The Road.

By: AnnaSalamon

AnnaSalamon — Thu, 25 Jan 2007 20:17:08 -0800

silence, If you're curious, I've also known Amanda (silentmiaow) for a long while. (Since '93, when we were both 12 and met at nerd camp). She twirled wildly through the dances and was rumored to be crazy, so I approached (er, maneuvered things so that when her roommate wanted to kick her out of a slumber party that the more socially suave members of the dorm were having, it was my room she ended up in) and we became friends. I've known her since. From what I have observed, the stalker arguments you ask about are complete hooey. Amanda liked the Beetles already at 12 (as most people did, right? But she talked about them a lot; as an introverted 12-year-old I was wowed by her knowledge). She stimmed a lot, twirling, "staring at walls" while zoning out visually, and flipping things in front of her face. She... I don't know, was Amanda already. Her collection of typewriters (which is another parallel Droopy mentions as copied) began when we went together to a thrift store in 1999, during my sophomore year of college, and she borrowed money from me for the purchase. As to me, just to avoid any further suspicions, I am also a real and existing person. My name's Anna Salamon, and I'm a grad student in philosophy of science at UCSD, as a web search should confirm. I have to say I'm impressed by the discussion here. I hadn't bumped into MetaFilter before. It looks like a live exchange of viewpoints instead of the anxious repetitions of party lines one finds so often on the web.

By: MythMaker

MythMaker — Thu, 25 Jan 2007 23:53:48 -0800

maudlin thanks so much for this FPP. This has been a great discussion. AnnaSalamon - thanks for coming by! I think it's great that 2 people who know her have been in the conversation. Now, Amanda just needs to make an appearance...

By: nickyskye

nickyskye — Fri, 26 Jan 2007 00:03:30 -0800

Silentmiaow's video was astounding and blew my mind. wow. It was/is a wonderful learning experience. Thanks so much maudlin for your post on her strong statement re other kinds of communication. Her gestures reminded me of the Sanskrit word, mudra. Or as if her body-mind is like a musical instrument that is played by her experiences of the world around her. I like her favorite videos too, including this one called Animal School.

By: Sukiari

Sukiari — Fri, 26 Jan 2007 00:13:39 -0800

I think I have a new theory about my neighbors!

By: five fresh fish

five fresh fish — Fri, 26 Jan 2007 00:27:49 -0800

But I don't think I'm necessarily autistic-- I think this might be how very young children, pre-language-- relate to and discover the world. Myself as well. It appears to me that the gal in the video enters a kind of "fugue state"… one that many of us on MetaFilter are probably familiar with. I think the contemporary term is "flow." It's that state of mind I get into when programming, and forget that anything but code flow exists; or when my wife plays piano for hours on end, 'becoming' the music. While in this state of concentration and flow we both enter a kind of death-of-self: we become our code or music. In many ways, we are communicating, brain-to-fingers-to-keys, to achieve the expression of an idea. I think my mother does the same when she's painting: she checks on out of this world and becomes a being of paint and canvas, light and tone and hue. When I was a child, I did the same sort of thing as this gal. Played for endless hours while in a state of visual and mechanical thought. There is endless variety in the physics of motion and cause-consequence; a million ways to drip a drop of paint and read the splash; to bounce a ball against the wall and read its angle and velocity; to shake about and feel the movement of muscle and bone. I'm all for checking out of the external, real world, the 'normal' world. Joggers and drunks do it all the time. But I'd not want to try to defend that time and experience as being as or more valuable than ordinary existence.

By: leibniz

leibniz — Fri, 26 Jan 2007 02:32:39 -0800

The accepted way to do this is with a musical instrument. She is not using a language but she is being expressive.

By: progosk

progosk — Fri, 26 Jan 2007 04:41:18 -0800

good thing there are folks like jokeefe around here (so true about early childhood resemblance; plus: nice simple restating of ethical basics, thx) i find it very interesting that there are informed challenges to the devastatingly new perspective silentmiaow has opened for most of us. at the same time i find it sad that there seems to be an established "i call bullshit" role in all uncomfortable discussions. personally, i find her allusion to ashley disturbing, mainly because i'd never have made the connection between two so categorically different conditions (though i understand that she's getting at the similarity in the rest-of-the-world's reaction to them, more than anything else). i'll be looking round for more on this angle, and am prepared to suspend my currently clear-cut opinion on ashley's case. apart from the rethink /new perspective on the social politics of disabilities, i find the questioning of the role/definition of language the most interesting part here. (again, sad to see so many knee-jerk dogmatists - i'll just say i envy the ease of your certainties.) now: lsd? stalkers? wtf? looks like i'll be reading up on this for a good while to come

By: silentmiaow

silentmiaow — Fri, 26 Jan 2007 05:15:08 -0800

Someone said I should post as well, so I'm doing so. It's interesting how many people describe what I do as checking out of reality, or various variants on this. In fact, this has more to do with which parts of reality a person is paying attention to. Somehow it is "reality" to engage in a lot of abstract symbolic thought (and sort of paste that thought on over one's surroundings and believe oneself to be perceiving them) but "not reality" to engage in interaction more or less directly with one's surroundings. If you talk to me for awhile you will find me quite a bit more lucid than some people are painting me as. (Those interested might want to thoroughly read my disclaimer on assumptions and the post linked from it.) Last September I went to a conference, where there were a number of other autistic people present. Most of us did not talk directly to each other much. Many of us did, however, subtly alter our movements in order to convey things to each other. When I got home, there were emails from a woman who was there who had correctly picked up on the meaning of what I was doing and vice versa. She had circled the table where I was sitting, and I had vaguely altered the rhythm and tone of my movements. This was a form of mutual acknowledgement. Another time I had a conversation across a room with someone about a plant in the corner without either of us saying anything. (No, this isn't telepathy, it's being highly aware of each other's reactions.) The interesting part being that in both of these instances, most people would not have seen any communication taking place. As far as research is concerned, they seem to be finding that non-autistic people filter out large parts of the world around them, imagine a whole lot to fill in the gaps, and are generally unable to stop even when it would be useful to stop. This has its useful points, and I would never deny that. But they are finding that autistic people, while we can and do filter our experiences like that, can drop the filter when necessary to directly perceive things (inasmuch as the human brain can directly perceive things). Much of our understanding of the world (including pretty high-level understanding) is taking place through things like pattern-matching that are often thought to be "mere" perception instead of "real thought". (Unfortunately this also means that mapping language-based communication based on patterns of what those around me were saying or what I was reading often led to some pretty serious misunderstandings, including doubts about my ability to understand the difference between reality and fantasy. My grip on reality was and is stronger than I have sometimes been given credit for, although as I said continued interaction with me should show that I'm not running around hallucinating or something.) But it also means that there are serious questions as to which group of people is more "in their own world" or "detached from reality". I can easily see the advantages of the thought pattern other people have, though, and why most people have it. The one I have also has its advantages. Someone mentioned being dropped in the woods alone. That's an interesting example. It's sometimes thought that the Wild Boy of Aveyron was originally autistic, and the victim of a failed infanticide (possibly based on the changeling tales that recommended infanticide to "bring the real person back"). There are many other stories of autistic children -- some thought to not understand a whole lot -- who suddenly perform very well in survival situations. I have said before that I would probably perform better in a survival situation than in an apartment. In an apartment, the steps required to get things like sustenance are pretty divorced from what the things around you tell you. There's nothing about refrigerators or stoves that tells me how to get food from them, and that's something I in fact have a good deal of trouble with. In a survival situation, obtaining food becomes a much more physical and practical problem, something that I could probably handle better. It's been shown that if you put me alone in an apartment for awhile, I can't pick up any environmental cues for how to do things, so I don't do a lot (I am not as good at most purely internally-directed physical actions). In a survival situation there are a wide variety of environmental cues that would prompt me into more action more readily. (Even living on the streets, which I only did for a few days during a housing problem, makes what needs to be done more apparent than living in an apartment.) This is of course not true for all of us, but I don't doubt that it would be true for a substantial minority, and stories seem to bear that out. Another thing that I think people might be missing here, is that I never really stopped, even while using other people's language (or appearing to), using my own. There's a vast difference between using a mode of perception as a little kid and discarding it and moving on to other ones (if indeed little kids have more than a superficial similarity to what I do, which I'm not sure either way on), and developing it into a fairly sophisticated way of handling things. I am sure the language of most very young children looks far more useless than adult language. I am likewise sure that the mode of perception and communication I'm most used to doesn't look all that sophisticated in a toddler, even though I have seen it be extremely sophisticated and useful in adults who never lost that way of perceiving or communicating. (Some of who use the "second language" of, say, what I am writing now, some of whom don't.) A closing thought, from a translation I did of an article in French called Autistes: L'intelligence Autrement: A number of scientists associate the peaks of ability in autistics with a strictly perceptual intelligence, which they often consider a not-very-advanced cognitive faculty. Yet, certain tasks on the Raven test seem to require a cognitive processing more complex than simple perception, notes Laurent Mottron. However, autistics, use perception in a different way than we use it, and this, to solve tasks known as intellectual. "Perception is superfunctional in autistics who discriminate better than we do on the visual and auditory planes. It probably plays a more important and more effective role in the resolution of tasks that call upon the intellect, than among the typicals," he emphasizes. When they look at an object, autistics categorize and generalize much less than typicals. Still, they meticulously explore the appearance of the object, its brightness, its shape, and make of it a very thorough, deep processing that opens many doors for them, explains the researcher. Autistics seem to learn many more things than us by simple exposure. "We assimilate information without making an intellectual effort, in a fashion less voluntary than the typicals, and without really knowing what we are doing," specifies the autistic Michelle Dawson. "This knowledge sits in my brain without doing anything until I find myself in front of a task in which this information is integrated and is used to solve the problem."

By: languagehat

languagehat — Fri, 26 Jan 2007 05:28:30 -0800

This thread is perhaps the most enlightening thing I've ever read on MetaFilter. Many thanks to AnnaSalamon and especially silentmiaow for joining in; I now have far more insight into autism and what the world is like for autistics than I did before.

By: progosk

progosk — Fri, 26 Jan 2007 05:36:14 -0800

hi silentmiaow. nice new (for me) use of "typical" - a label i'm prepared to bear carrying, freshly aware of its limitations. is there anywhere specific to read more about your thoughts on ashley?

By: OmieWise

OmieWise — Fri, 26 Jan 2007 05:43:38 -0800

silentmiaow-I finally got a chance to see your video and it was quite affecting. I'm glad it was linked here. MythMaker writes "Here's some more schizophrenia/shamanism links:

"Here's one from a Jungian therapy POV.

"Here's a scholarly article about it.
"
"Here's another." Thanks for the references. I'll be pursuing them for sure (although probably not the Jungian one, I'm unconvinced, to say the least, by Jungian representation of the ucs.). Reading the abstracts of the two JSTOR articles, the first one calls the shamanism-schizophrenia link "untenable", while the other one says "there are not significant differences between the two states." It will be interesting to try to reconcile the two positions.

By: silentmiaow

silentmiaow — Fri, 26 Jan 2007 06:01:05 -0800

My thoughts on Ashley are mostly indignantly scattered throughout various parts of the feminist blogosphere. But they boil down to, most fundamentally, that it is wrong to make assumptions about a person's comprehension of the world based on highly atypical reactions to it, or their right to their own body based on their comprehension of the world. I've experienced both being considered totally uncomprehending, and also being considered something more akin to miscomprehending (out of touch with reality), at times when I was far more aware of what was going on than most people gave me credit for. I've experienced having my perceiving the world dismissed as too primitive to be useful in the real world. I've even experienced people pointing to brain scans to give "evidence" for the "real reason" that I did or didn't do various things. A woman I know (she can name herself if she wishes, I'm just trying to give credit, but this was said in private) talks about knowing people with Rett syndrome, profound motor impairments to the point of total immobility, and microcephaly, who were in most circumstances thought of as simply not understanding anything. But with things like eye pointers, they can and do communicate a more sophisticated understanding than they were given credit for. Research is currently in the early stages of noting that brain scans of certain kinds can be used in people who can't even use eye gaze. (I really hope the research changes from awed speculation to switches to control communication equipment, soon.) But the point is, a lot of what is being said about her is speculation. The idea of mental age is a vague construct and not accurate to how people think throughout their lives. She might not understand things the exact way most people do, but she does understand things. Many people have compared how I think to how young children interact with the world, but have not made the leap to seeing that stopping that way of interacting with the world as a young child yields a great deal less knowledge and sophistication than continuing it into adulthood. Likewise many people are all too willing to assign Ashley a "mental age" (and thus dismiss her?) without considering that, even if the method of her thought processes resemble in some way an infant, the content and complexity and level of knowledge is going to differ because she is older. (And that's assuming that all their assessments of her faculties are correct.) And then there's the strange idea that people who are more severely disabled somehow need less protection against people doing stuff like this to them. In my opinion, the opposite is true. At any rate, the point of associating my video with her was not to directly say I am like her (I am not), but to say that people's personhood and intellect tend to only get taken seriously if they're either (a) a certain kind, or (b) something that can be made to resemble a certain kind.

By: melissa may

melissa may — Fri, 26 Jan 2007 06:15:51 -0800

Thanks very much for posting your comments, silentmiaow. I've been reading your blog avidly since the video was posted and I've been learning a lot from it. I particularly liked A credo for support and Life's infinite richness. I'll certainly be returning to read more of your archives.

By: silentmiaow

silentmiaow — Fri, 26 Jan 2007 06:25:12 -0800

Also, autism turns out not to be as much of a "social disability" as previously thought. Our perceptual differences are there across social and non-social situations (including social and non-social experiments in science). Once language skills are controlled for, we're not bad at false-belief tasks (supposed to show a "theory of mind" either -- on drawing-based tests of "theory of mind", we seem to do as well as non-autistic people. The "social disability" seems to result from a clash between two extremely different perceptual systems, and the majority rules in terms of which one is considered more socially impaired by the mutual misunderstanding.

By: dmd

dmd — Fri, 26 Jan 2007 07:02:31 -0800

sorry to probe even more DMD I think I'll refrain from saying any more now that she's here to speak for herself.

By: TheOnlyCoolTim

TheOnlyCoolTim — Fri, 26 Jan 2007 07:10:01 -0800

But they are finding that autistic people, while we can and do filter our experiences like that, can drop the filter when necessary to directly perceive things (inasmuch as the human brain can directly perceive things). Continuing the theme of my earlier comment, the psychedelic drugs are also thought to work by dropping filters. I understand the behavior of people tripping to be very similar to some things silentmiaow does in the video, e.g. staring at the swirling chain. (At this point I have to ask silentmiaow how the LSD worked for her, if you want to discuss it.) Anyone know of any research linking psychedelic and autistic states of mind? I didn't find anything useful googling, mostly some weird idea that milk turns into opiates in autistic people's bodies, especially weird as opiates aren't particularly hallucinogenic.

By: Miko

Miko — Fri, 26 Jan 2007 07:35:27 -0800

Another time I had a conversation across a room with someone about a plant in the corner without either of us saying anything. (No, this isn't telepathy, it's being highly aware of each other's reactions.) The interesting part being that in both of these instances, most people would not have seen any communication taking place. This is indeed interesting. Absolutely fascinating thread with provocative discussion. Thank you all.

By: pracowity

pracowity — Fri, 26 Jan 2007 07:45:41 -0800

A transcription:

A Translation The previous part of this video was in my native language. Many people have assumed that when I talk about this being my language that means that each part of the video must have a particular symbolic message within it designed for the human mind to interpret. But my language is not about designing words or even visual symbols for people to interpret. It is about being in a constant conversation with every aspect of my environment. Reacting physically to all parts of my surroundings. In this part of the video the water doesn't symbolize anything. I am just interacting with the water as the water interacts with me. Far from being purposeless, the way that I move is an ongoing response to what is around me. Ironically, the way that I move when responding to everything around me is described as :"being in a world of my own" whereas if I interact with a much more limited set of responses and only react to a much more limited part of my surroundings people claim that I am "opening up to true interaction with the world". They judge my existence, awareness, and personhood on which of a tiny and limited part of the world I appear to be reacting to. The way I naturally think and respond to things looks and feels so different from standard concepts or even visualization that some people do not consider it thought at all but it is a way of thinking in its own right. However the think of people like me is only taken seriously if we learn your language, no matter how we previously thought or interacted. As you heard I can sing along with what is around me. It is only when I type something in your language that you refer to me as having communication. I smell things. I listen to things. I feel things. I taste things. I look at things. It is not enough to look and and listen and taste and smell and feel, I have to do those to the right things such as look at books and fail to do them to the wrong things or else people doubt that I am a thinking being and since their definition of thought defines their definition of personhood so ridiculously much they doubt that I am a real person as well. I would like to honestly know how many people if you met me on the street would believe I wrote this. I find it very interesting by the way that failure to learn your language is seen as a deficit but failure to learn my language is seen as so natural that people like me are officially described as mysterious and puzzling rather than anyone admitting that it is themselves who are confused not autistic people or other cognitively disabled people who are inherently confusing. We are even viewed as non-communicative if we don't speak the standard language but other people are not considered non-communicative if they are so oblivious to our own languages as to believe they don't exist. In the end I want you to know that this has not been intended as a voyeuristic freak show where you get to look at the bizarre workings of the autistic mind. It is meant as a strong statement on the existence and value of many different kinds of thinking and interaction in a world where how close you can appear to a specific one of them determines whether you are seen as a real person or an adult or an intelligent person. And in a world in which those determine whether you have any rights there are people being tortured, people dying because they are considered non-persons because their kind of thought is so unusual as to not be considered thought at all. Only when the many shapes of personhood are recognized will justice and human rights be possible.

By: jokeefe

jokeefe — Fri, 26 Jan 2007 07:49:51 -0800

Thank you for coming by, silentmiaow. This has been a fascinating discussion all round.

By: peacay

peacay — Fri, 26 Jan 2007 08:16:29 -0800

I wish to add my sincere thanks to maudlin for posting this thread. And of course, thanks to silentmiaow. It has been a thoroughly interesting assimilation and I suspect that I need further processing to raise my level of understanding. I suppose I am puzzled by many of the ideas expressed and that is most likely due to my own level of ignorance. Or to be a little more precise, I'm unsure to what extent I concede that a single person's documentation of their own experiences and perceptions are able to be extrapolated as a kind of mapping description for such a widely diverse set of characteristics as are assembled under the banner of 'autism'. If I recall correctly, silentmiaow didn't actually attempt to do this or at least mentions somewhere that her frame of reference might only coincide with a small subset. There have been excellent descriptions in this thread (pardon my forgetting the names) of the anguish and torture that some (?many) of those described or diagnosed as 'austistic' face as an episodic reality in their existence, and although it may be a neat hypothesis to regard this as an extension of their special communicative abilities with their environment, I don't actually see it that way. I like to think I'm pretty open minded but it seems to me that in those groups of individuals for whom life confers such abject pain, it is of less importance to have an appreciation for their perceptive 'specialness' than it is to learn how to ameliorate the environmental stimuli responsible for their difficulties and also to institute behavioural therapy drawn from 'our' reading of the situations to reduce the harsh episodes when they do arise. Maybe I'm using pc language here to state that whilst I'm very interested to hear of silentmiaow's opinions and descriptions and how I believe these raise our general level of awareness of people who have differing perceptive mechanisms than the majority of us, I also feel that a certain caution is warranted in terms of reading a whole truckload of extrapolative conclusions from one person's story. But I'll keep thinking about it all.

By: silentmiaow

silentmiaow — Fri, 26 Jan 2007 08:24:13 -0800

Just for reference, although I don't want to get into a very long discussion of this, LSD actually normalized my perceptions somewhat unless I took large quantities. (No I don't think any of this was the brightest idea, but no, there were no permanent effects.) There was some research on autistic children with LSD awhile back (which I think is a horrible thing to do to children in general), which seemed to support this idea, some would talk for the first time or pay attention to people's voices. It certainly made me often less overloaded, not more. I'm not sure what that says about my brain, except that when I saw other people on LSD, I thought they were being very silly, I didn't totally understand they were experiencing something very different than what I was. (The whole reason I came into contact with it, though, was that people thought I was on it to begin with.)

By: koeselitz

koeselitz — Fri, 26 Jan 2007 08:25:27 -0800

Wow. This is an incredible thread. AnnaSalamon: you don't give an email in your profile, so I'll have to ask here. Did you, by any chance, happen to go to a certain St. John's College? Everything I see here, and elsewhere on the web, indicates that you're somebody I know. Hmm...

By: silentmiaow

silentmiaow — Fri, 26 Jan 2007 08:27:09 -0800

Something that was written in response to this elsewhere, by someone I know online, named Zilari: I don’t normally write about this anywhere public, but in the interest of helping break down the preponderance of assumptions regarding autistic people, I will do so now. My experience re. LSD was remarkably similar to what Amanda describes. Basically, I was accused of being on it so frequently that (following over a year of intensive autistic-perseverative research) that I needed to see what it was all about for myself. My experimentation was also very minimal and I did not keep it up chronically, and haven’t touched anything like that in many years now. But it is possible for an autistic person who looks “autistic enough” to be accused of being on LSD even when they are not to end up obtaining the stuff somehow. In my case, it had to do with the fact that some of the only people in high school who would tolerate my presence were those interested in psychedelics — many of them seemed to have interests in things like consciousness research and synesthesia and the kinds of music I liked at the time (e.g., Pink Floyd, particularly the very early stuff). And though some of these people ended up in somewhat sad situations (usually as a result of getting involved in addictive, non-psychedelic drugs or alcohol), they did tend to be rather open-minded and accepting, and interested in learning about stuff that I was also interested in, so they were a natural group for me to associate with…though I never really participated in the party element, it did mean I was in proximity to people who had access to things like LSD. Just because the mainstream social group might shun autistic people, that doesn’t mean that the “fringe” groups will as well.

By: moonbird

moonbird — Fri, 26 Jan 2007 08:35:18 -0800

One of themost compelling threads we've had in a long time. Welcome, silentmiaow.

By: maudlin

maudlin — Fri, 26 Jan 2007 08:50:16 -0800

I'm astonished. I found something wonderful and puzzling on my lunch break yesterday, made a quick post (complete with timing error -- the translation starts at 3:13, not 5:20) before I was devoured by work again, and now there's this. I want to thank everyone who has brought something to this thread, especially Amanda, who has been able to extend and clarify her commentary on her experience for us. This has been one of the most stimulating, yet respectful, conversations I've seen here for a while.

By: Nelson

Nelson — Fri, 26 Jan 2007 08:57:14 -0800

Yes, this thread has been awesome. Silentmiaow, I hope you stick around and contribute to the usual Metafilter silliness.

By: five fresh fish

five fresh fish — Fri, 26 Jan 2007 08:57:56 -0800

A thought before I head off to work: the other Christmas I had two cats in the house who had never met one another and had no real experience of other cats. We all observed them as they carefully checked one another out... and they did most of this without being near each other and frequently without really looking at one another. It was plainly obvious that there was communication of a sort taking place. It was also obvious that it was a very subtle communication of motion, posture, placement, and so on. Not a verbal language, but a body language. It seems to have been similar to talking about the plant in the corner without speaking. All about interpretation of non-verbal clues on level that most of us can not read.

By: allkindsoftime

allkindsoftime — Fri, 26 Jan 2007 09:19:16 -0800

This incredibly awesome thread has been MeTa'd, fyi.

By: hortense

hortense — Fri, 26 Jan 2007 09:34:10 -0800

here is a quiz