In My Language
January 25, 2007 9:13 AM   Subscribe

An autistic woman "speaks" her language, then ours. (YouTube) "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]
posted by maudlin (170 comments total) 194 users marked this as a favorite
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.
posted by maudlin at 9:14 AM on January 25, 2007 [2 favorites]

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.
posted by jouke at 9:21 AM on January 25, 2007

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.
posted by elpapacito at 9:25 AM on January 25, 2007 [3 favorites]

which, as someone on YouTube says, sounds like Sigur Ros

Its true!!
posted by j-urb at 9:30 AM on January 25, 2007

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.
posted by dobbs at 9:32 AM on January 25, 2007 [1 favorite]

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

posted by tadellin at 9:35 AM on January 25, 2007 [4 favorites]

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.
posted by DenOfSizer at 9:46 AM on January 25, 2007

Holy crap. I went to college with her, 1994-1995.
posted by dmd at 9:51 AM on January 25, 2007 [2 favorites]

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.

posted by dmd at 9:55 AM on January 25, 2007 [4 favorites]

The world isn't against her, as she seems to believe.
posted by billysumday at 9:57 AM on January 25, 2007

Extremely interesting—thanks for the post.
posted by languagehat at 9:59 AM on January 25, 2007

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.
posted by Astro Zombie at 10:04 AM on January 25, 2007

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?'
posted by Miko at 10:09 AM on January 25, 2007 [2 favorites]

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.
posted by Listener at 10:12 AM on January 25, 2007 [1 favorite]

First part Sigur Ros, second part Radiohead.
posted by jimmythefish at 10:13 AM on January 25, 2007 [3 favorites]

For anyone interested, volumes-worth of her writing may be found by searching Google Groups for or "Galiganinda Dulin".
posted by dmd at 10:14 AM on January 25, 2007

and I die inside a little bit for refering to usenet as 'Google Groups'
posted by dmd at 10:15 AM on January 25, 2007 [2 favorites]

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.
posted by jimmythefish at 10:27 AM on January 25, 2007

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.
posted by OmieWise at 10:36 AM on January 25, 2007 [1 favorite]

You could but a basic Paso Doble [youtube] to what she sings.
posted by frecklefaerie at 10:40 AM on January 25, 2007

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.
posted by scottreynen at 10:45 AM on January 25, 2007

Quick sidetrack - is there a name for the particular blocks that she is interacting with at 6:15?
posted by arcticwoman at 10:45 AM on January 25, 2007

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." Not that it matters, since her "language" is a bunch of nonsense, according to her own statement (i.e. she directly states that it contains no symbolism but is merely animal interaction with her environment).
posted by nzero at 10:52 AM on January 25, 2007 [6 favorites]

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, 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.
posted by MythMaker at 10:53 AM on January 25, 2007 [2 favorites]

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.
posted by damnthesehumanhands at 11:02 AM on January 25, 2007 [3 favorites]

No, that's exactly what she's saying.
posted by MythMaker at 11:04 AM on January 25, 2007

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.
posted by nzero at 11:05 AM on January 25, 2007

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.
posted by hal9k at 11:15 AM on January 25, 2007 [4 favorites]

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.
posted by LooseFilter at 11:17 AM on January 25, 2007

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?
posted by LooseFilter at 11:22 AM on January 25, 2007

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, 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".
posted by elpapacito at 11:22 AM on January 25, 2007 [3 favorites]

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.
posted by doctor_negative at 11:24 AM on January 25, 2007 [1 favorite]

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.
posted by LooseFilter at 11:28 AM on January 25, 2007 [1 favorite]

3000 years ago, an autistic person would have been regarded as the village sage.
posted by localhuman at 11:33 AM on January 25, 2007

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?
posted by dmd at 11:34 AM on January 25, 2007 [1 favorite]

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.
posted by TheOnlyCoolTim at 11:34 AM on January 25, 2007

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.
posted by MythMaker at 11:47 AM on January 25, 2007 [2 favorites]

By tortured and dying she means psychiatric abuse I infer from this post of hers.
posted by Listener at 11:56 AM on January 25, 2007 [1 favorite]

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.
posted by solistrato at 12:13 PM on January 25, 2007

To amend: I mean "translated by someone else," since she obviously translates for us in the video.
posted by solistrato at 12:14 PM on January 25, 2007

I'd argue that everyone has equal intrinsic value because we (i.e. mankind) keep agreeing publically that we all do.
posted by MythMaker at 12:20 PM on January 25, 2007 [1 favorite]

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.
posted by MythMaker at 12:23 PM on January 25, 2007

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.
posted by Brainy at 12:33 PM on January 25, 2007

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.
posted by OmieWise at 12:37 PM on January 25, 2007 [5 favorites]

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.
posted by StickyCarpet at 12:42 PM on January 25, 2007

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.
posted by [expletive deleted] at 1:13 PM on January 25, 2007 [10 favorites]

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.
posted by languagehat at 1:13 PM on January 25, 2007 [3 favorites]

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.
posted by elpapacito at 1:16 PM on January 25, 2007 [2 favorites]

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.
posted by [expletive deleted] at 1:24 PM on January 25, 2007

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.
posted by Miko at 1:31 PM on January 25, 2007

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.
posted by melissa may at 1:38 PM on January 25, 2007 [3 favorites]

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.
posted by ericb at 1:43 PM on January 25, 2007

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.
posted by melissa may at 1:43 PM on January 25, 2007

profoundly fascinated. thx maudlin.
posted by progosk at 1:50 PM on January 25, 2007

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.
posted by MythMaker at 1:54 PM on January 25, 2007


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?
posted by nzero at 2:19 PM on January 25, 2007 [1 favorite]


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.
posted by nzero at 2:21 PM on January 25, 2007

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.
posted by MythMaker at 2:26 PM on January 25, 2007


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?
posted by nzero at 2:30 PM on January 25, 2007


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).
posted by nzero at 2:31 PM on January 25, 2007

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.
posted by Miko at 2:40 PM on January 25, 2007 [1 favorite]

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.
posted by OmieWise at 2:41 PM on January 25, 2007

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.
posted by MythMaker at 2:41 PM on January 25, 2007

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.


I find the epilepsy thing really interesting to explain some religious experiences, UFOs, etc.
posted by MythMaker at 2:52 PM on January 25, 2007

That was impressive and thought provoking, thanks for posting it.
posted by Shutter at 2:57 PM on January 25, 2007

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.
posted by mobunited at 2:57 PM on January 25, 2007 [7 favorites]

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.
posted by Ogre Lawless at 2:58 PM on January 25, 2007

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.
posted by jimmythefish at 2:58 PM on January 25, 2007

(perhaps substitute "value" as "worth while")
posted by Ogre Lawless at 2:58 PM on January 25, 2007

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.
posted by MythMaker at 3:06 PM on January 25, 2007

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.
posted by jokeefe at 3:06 PM on January 25, 2007 [2 favorites]

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.
posted by jimmythefish at 3:16 PM on January 25, 2007 [2 favorites]

...and please allow me to use the word nuance a few more times. Nuance.
posted by jimmythefish at 3:17 PM on January 25, 2007

posted by MythMaker at 3:20 PM on January 25, 2007

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.
posted by Mental Wimp at 3:45 PM on January 25, 2007

"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?
posted by CitrusFreak12 at 3:48 PM on January 25, 2007

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
posted by tidecat at 4:00 PM on January 25, 2007


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.
posted by nzero at 4:01 PM on January 25, 2007

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.
posted by MythMaker at 4:14 PM on January 25, 2007

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?
posted by jason's_planet at 4:16 PM on January 25, 2007

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.
posted by jokeefe at 4:26 PM on January 25, 2007 [12 favorites]

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 !
posted by silence at 4:41 PM on January 25, 2007

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.
posted by languagehat at 4:45 PM on January 25, 2007

The history in question would Godwin this discussion, frankly.
posted by MythMaker at 4:54 PM on January 25, 2007

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.
posted by jokeefe at 5:03 PM on January 25, 2007

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.
posted by aoxomoxoa at 6:33 PM on January 25, 2007

(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.
posted by jason's_planet at 6:52 PM on January 25, 2007

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.
posted by AnnaSalamon at 8:17 PM on January 25, 2007 [8 favorites]

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...
posted by MythMaker at 11:53 PM on January 25, 2007

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.
posted by nickyskye at 12:03 AM on January 26, 2007

I think I have a new theory about my neighbors!
posted by Sukiari at 12:13 AM on January 26, 2007

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.
posted by five fresh fish at 12:27 AM on January 26, 2007 [4 favorites]

The accepted way to do this is with a musical instrument. She is not using a language but she is being expressive.
posted by leibniz at 2:32 AM on January 26, 2007 [2 favorites]

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
posted by progosk at 4:41 AM on January 26, 2007

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."

posted by silentmiaow at 5:15 AM on January 26, 2007 [93 favorites]

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.
posted by languagehat at 5:28 AM on January 26, 2007 [3 favorites]

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?
posted by progosk at 5:36 AM on January 26, 2007

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.

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.
posted by OmieWise at 5:43 AM on January 26, 2007

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.
posted by silentmiaow at 6:01 AM on January 26, 2007 [4 favorites]

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.
posted by melissa may at 6:15 AM on January 26, 2007

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.
posted by silentmiaow at 6:25 AM on January 26, 2007 [2 favorites]

sorry to probe even more DMD

I think I'll refrain from saying any more now that she's here to speak for herself.
posted by dmd at 7:02 AM on January 26, 2007

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.
posted by TheOnlyCoolTim at 7:10 AM on January 26, 2007

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.
posted by Miko at 7:35 AM on January 26, 2007

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.
posted by pracowity at 7:45 AM on January 26, 2007 [2 favorites]

Thank you for coming by, silentmiaow. This has been a fascinating discussion all round.
posted by jokeefe at 7:49 AM on January 26, 2007

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.
posted by peacay at 8:16 AM on January 26, 2007

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.)
posted by silentmiaow at 8:24 AM on January 26, 2007

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...
posted by koeselitz at 8:25 AM on January 26, 2007

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.

posted by silentmiaow at 8:27 AM on January 26, 2007

One of themost compelling threads we've had in a long time. Welcome, silentmiaow.
posted by moonbird at 8:35 AM on January 26, 2007

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.
posted by maudlin at 8:50 AM on January 26, 2007

Yes, this thread has been awesome. Silentmiaow, I hope you stick around and contribute to the usual Metafilter silliness.
posted by Nelson at 8:57 AM on January 26, 2007

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.
posted by five fresh fish at 8:57 AM on January 26, 2007

This incredibly awesome thread has been MeTa'd, fyi.
posted by allkindsoftime at 9:19 AM on January 26, 2007

here is a quiz
posted by hortense at 9:34 AM on January 26, 2007

If a person is reacting to pain caused by their environment, I doubt that behavioral therapy is the right move.

I have a kind of pain that's either a neuropathy or central pain, unsure which. Anecdotally, many autistic people experience this kind of pain during overload. I experience it all the time, and have for my entire memory, but it's a lot worse during overload.

I take medication for it. It goes away. I still overload, but the pain isn't there, or not as bad.

But I had to wait a very long time to get that medication.

One reason is that my reactions to pain (of any kind) over the years have been treated behaviorally.

A few years ago I sprained my finger badly reaching for a book (I call it my nerd injury). I screamed. The staff in the room with me treated the screaming as inappropriate behavior. My finger was never treated. It's now permanently bent.

I did not receive treatment for migraine headaches until adulthood. Similarly, any reaction to them, behavioral, respond to it with behavior mod if anything.

This creates a person who may have had trouble communicating about pain to begin with but later finds it impossible.

I have certainly benefited from learning not to hurt people, and learning how not to hurt myself, and so forth. But not through behaviorism, which always only had temporary results. I had to learn how to spot and stop things before they started, and I had to learn why not to do things.

It was not a therapist that taught me that. It was another autistic person who'd been there. In fact many of the most important things I've learned in life have come from people who've been there, not people clumsily writing behavior programs for behaviors they don't understand.
posted by silentmiaow at 9:58 AM on January 26, 2007 [2 favorites]

Great thread and discussion.

siilentmiaow, thanks for sharing in this thread. I've truly enjoyed your comments and thoughts. Thank you also for writing that meaningful and brilliant comment/essay on your blog, Outposts In Our Heads: The Intangible Horrors of Institutions, that Must Not Be Forgotten.

From Wikipedia on the Autism Rights Movement. Previously on MetaFilter.
posted by nickyskye at 10:03 AM on January 26, 2007

Wow, this thread is fascinating. silentmiaow, thank you, thank you, thank you for opening up and sharing your reality with some typicals--not just here, but on your site, etc. I've often felt that my mind gets in the way of my perceptions far too much, and it's incredibly compelling to get glimpses into your consciousness.

I'll also have to reconsider my initial conclusions from first watching your video!
posted by LooseFilter at 10:23 AM on January 26, 2007

silentmiaow, if you're responding to me then maybe I was being too general.

I guess I was mostly trying to take into account situations as described back up the page. Small triggers causing major heartache (acknowledged by the affected person). I am not particularly qualified to debate the point to any significant extent but I'm a bit sensitive to the notion that learning how to help calm that distressed child down and how to reduce the frequency that painful episodes occur by using behavioural therapy (now there's a charged term) should be so easily dismissed.

Maybe we have differing definitions anyway for what behavioural therapy is and is not. You have obviously formed strong views.

As I say, I'm very interested to hear all that you have to communicate, seriously. But at the same time I also think that one person's experience is not the total picture, that's all.
posted by peacay at 10:29 AM on January 26, 2007

Very cool video and personal anecdotes. Thanks for sharing a glimpse of your life, silentmiaow. It is appreciated.
posted by McGuillicuddy at 10:57 AM on January 26, 2007

silentmiaow -

Thanks so much for coming and participating in this thread, and for the video and your writing on your blog. I hope you stay around. Your perspective on things is really great.

I'd been reading a lot about autism myself lately, but I have to say that your perspective has helped me see some things more clearly than before.
posted by MythMaker at 11:06 AM on January 26, 2007

Thank you silentmiaow, for making this video and responding to this thread. You seem like an amazing person, and it's made me completely take a second look at what I had thought autism was. Keep doing what you're doing.
posted by empath at 11:10 AM on January 26, 2007

Fascinating to hear from you. If you're still listening, silentmiaow, please affirm or refute one observation I have had about autistic functioning. You point out that perception is more direct and unfiltered. It appears to me that retrieval of remembered perceptions is also facilitated. I often know I know something or have seen something but can't retrieve it (now). It will come later. When I was younger, before age 7 or so, I felt like I could remember everything that had ever happened to me perfectly, but seemed to lose that as I got older. Was my early youth experience a faint echo of an autistic person's recall?
posted by Mental Wimp at 11:46 AM on January 26, 2007

Okay... responses to a couple people.

I don't think I've ever claimed that my experience is the whole picture. I don't view disablement, though, as an individual thing, but a sort of wide-scale pattern, and I (and many others) do comment on that wide-scale pattern. We can of course be wrong, but it's not necessarily because we're extrapolating everything from individual experiences.

With regard to memory, I don't have total recall. I have immense trouble with anything that's not triggered. That's actions, memories, thoughts, movements, anything. Don't trigger it exactly right and it's not there. Do trigger it and it's there in often an extreme amount of detail and/or precision and/or accuracy and/or dexterity. So the memories and skills are always there, but I'm actually less able to access them deliberately, but at the same time probably more accurate/skilled/whatever once they're triggered by something.

That's not how all autistic people are, though, by any means. Some do seem to have total recall or something close to it. My brother used to.
posted by silentmiaow at 12:06 PM on January 26, 2007

There's a certain poetry to the language debate on this thread. The language being presented is so entirely concrete so as to allow almost no abstraction, while the concept of it being a language is so abstract that it's driving the more concrete linguistic geeks nuts.

Somehow I'm reminded that almost all art is at some point described as being a conversation between the artist and the medium.
posted by tkolar at 12:49 PM on January 26, 2007

That was absolutely beautiful. Thanks, maudlin, for posting it and thanks, silentmiaow, for responding in this thread and sharing your video and your thoughts with us.

I've passed the video and this discussion along to several other people, including my mother, who works with autistic and Asberger's individuals (and who taught me to think of myself more as "neurotypical" than "normal"), and a friend who has an autistic sibling. I hope they find it as informative and interesting as I did. I know that in the future this will most definitely affect how I interact with autistic people. I can only hope it helps me better communicate with them.
posted by aine42 at 12:57 PM on January 26, 2007

I'm thinking about this term (new to me) 'neurotypical'. It seems as though many of those here who are most familiar with autism prefer to 'normal,' and I'm wondering why.

Most definitions of normal simply describe it as referring to a standard or norm, or an average or typical quality. If normal already means typical, why is the new word 'neurotypical' preferred? Is it because it's more specifically about the brain because of the use of the 'neuro-' prefix, so we know it doesn't mean some other kind of normal that might refer to physical features or something like that? Is it to clear up confusion about what norm is being referenced? (For instance, it may be completely normal for autistic people to interact with their environment through repetitive motion, but not normal for non-autistic people to do so. When autism is the norm being referenced, the behaviors that are normal are those most typical of or consistent with autism). Is it that to describe someone as 'not normal' feels too pejorative? Or is there some other reason? Where did the term originate? Who uses it and why?
posted by Miko at 1:14 PM on January 26, 2007

Also with regard to some people understanding this and others not: Definitely. I've met a good deal of autistic people. Many are mutually comprehensible to each other. Many are not. Some people are mutually comprehensible to each other but totally incomprehensible to me, and vice versa. And I've met non-autistic (but usually disabled in some way) people who speak my language, as well.

But one reason I insist on calling it a language, is that it's mutually comprehensible to some people who've never met before, on sight. Like the cats someone described. I am sure it can be learned to an extent, but with a lot of people I've met, no learning was required, it was just there and understood.

Sometimes that's been a pretty shocking thing. When I met Joel Smith, he and I could read each other so well that it was almost invasive. He and I are both accustomed to being readable by very few people, and to being able to read very few people to that extent.

I've been collecting (at the request of another autistic person) accounts by other autistic people of similar things: of appearing to share a language (for lack of a better term) with people they'd never met before, sometimes after having never or rarely met anyone who shared their language. And it seems to be a fairly common phenomenon.
posted by silentmiaow at 1:25 PM on January 26, 2007 [1 favorite]

silentmiaow:from my point of view, the stuff you are looking into about communicating via nonverbal language with other autistic people is the most interesting aspect of what you're saying. I'm wondering something else - when you meet someone and feel that there's been such a communication, as when you met Joel Smith, did you then mutually confirm that the communication had taken place? Did you do so using written or spoken language?

I ask because it would seem possible to believe that there's been a communication even if there has not, in the same way that I might feel someone was being cold or brusque to me when they were not.

I'm really just curious. On one level the question is a strange one, because I am sort of asking for 'proof' that the communication went two ways, when I wouldn't ask for proof from someone without autism. After all, I don't consciously confirm my nonverbal interactions with people, either. Generally, we can exchange a smile or raised eyebrow with someone and be fairly confident that we understood one another without confirming it over e-mail later. But that is because we share cues; we share a nonverbal language that is a quite real language. But it is still a fair question, because there has been a great deal of study of nonverbal 'body' language showing that most of it is very quickly and easily understood by most members of the same culture. So there is evidence that it works. I guess I'm wondering what would be your evidence that communication -- about the plant, for instance -- has taken place. How did you know you weren't just thinking that the other person was referencing the plant?
posted by Miko at 1:39 PM on January 26, 2007

An autist plays basketball.
posted by nickyskye at 2:04 PM on January 26, 2007

Yes, I've confirmed it with most people who have more typical means of communication, including the woman I talked to about the plant (who can speak and is not autistic).

I want to clarify that when I say mutually comprehensible, I mean mutually comprehensible in the sense that two people who grow up in the same culture can understand each other's body language, and two people who speak the same language (such as English) can understand each other's words. It's not absolute understanding. It's not telepathy, although it can be accused of being telepathy by people who don't perceive the communication and thus think it's invisible. (That's an interesting study in "If I can't see it, it's not there, and must be magic.") It's plenty fallible.

I also want to clarify that I won't make absolute statements about the content of communication from people who don't have a clear way of refuting me. I can assume that if I march around with someone singing the same (non-word) thing at the same time and making it up as we go along but being continually in sync both with sounds and actions, then something is taking place beyond randomness. But if she does not say so in English, I will be careful about how I frame that interaction, because I have had people interpret me wrong before and I don't like it.

On a similar topic, I have a friend who serves as what is called a "cognitive interpreter" during meetings (this is something done at my discretion and with my full consent).

To give an example of what she does, she once (about a year and a half ago) came into a meeting where two people were getting me to repeat what they wanted me to say. She took one look at me and started telling them what I was really thinking. They kept telling her that she had no way of knowing that because I had "no body language". She told them that she knew me very well and was well aware of what my body language conveyed, and further that serving as a cognitive interpreter was her job.

They were not happy with her telling them what I was really thinking, because they had been happily running roughshod over me for some time. I eventually kept typing "LISTEN TO HER. SHE IS RIGHT." And stuff like that. And they ended up having to concede that what she was saying about me was accurate. But quite often people have attempted to throw my interpreters out of the room or hold meetings without them because they view them as a disruptive influence.

Usually an interpreter is someone who knows me very well and can interpret my reactions to things very well. Often the interpreter is autistic. At one point my interpreter was a woman who was not autistic but had spent a couple years longer in institutions than I had.

The dangerous people, I have found, are ones who assume that if they have a knowledge of cause and effect, they have a knowledge of me -- that if they can control me, they understand me. I tend to avoid them as soon as I detect them, but they are the reason I try to avoid absolute definitive statements about people who can't speak or type, even if I think I'm pretty sure what they're meaning by something.
posted by silentmiaow at 2:08 PM on January 26, 2007 [2 favorites]

i (and perhaps not only i) find two things quite startling, silentm.

one is your eloquence about things that you have cognitive trouble with, your remark "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" being a specific example. it's hard for me to wrap my head around the fact that you can know/say this, and yet this does not solve the actual practical problem. although you clearly know what a fridge is, you will not know what to do with one when you next encounter one, with regard to your hunger. (or am i completely misunderstanding you?)

the other is your superb dialogue skills in this internetted medium. were you as avid a reader/typer before the web/blogs/etc? do you spend a lot of your time at the computer? (i'd also ask you about your appreciation of video as an expressive medium, but i'm already ashamed at all the questions i'm accumulating...)
posted by progosk at 2:40 PM on January 26, 2007

I'll link to a post on what I used to do on BBSes: How Much Can We Learn While Safely Supervised?. And yes quite avid reader both with and without immediate understanding of meaning. How a lot of this eventually came together (after I don't know how many times of learning and forgetting and learning pieces and so forth) is described in Learning Communication Skills from Autistic People (I'd also suggest my disclaimer and assumption ping-pong posts). That covers some of the reading/typing stuff and speaking stuff.

For food:

I'm going to just cut and paste something regarding the food thing, since people have asked for that explanation before (this describes a real situation I was in, and is not designed to provoke emotions, just to inform).

So in the interests of education — and please take it as that — I’m going to explain why a person capable of logical thinking, and not even necessarily in any particular emotional distress, who has quite a large store of willpower, may still not be able to get to food when it’s in front of them and they’re starving. This is real stuff, it’s not exaggerated, what I’ve experienced is not even the most extreme version of what I’m going to talk about. I know autistic people who can’t volitionally reach up and scratch their noses, ever, and I usually can.

I don’t need your sympathy from this, but someone else may well need your understanding — not your warm fuzzy emotional understanding, but your understanding that they’re in danger and may not be as lucky as I was. So, please take this as educational information, if you really want to know.

At any rate, it goes something like this (this is going to be oversimplified, I don’t have all night):

Most people look at their surroundings and they see things a particular way. Like, a person with a different brain looking through my eyes would see, a computer monitor, sitting on a desk, with words on it, that they would proceed to read at least a few of without thinking much about it, etc.

Most people don’t even have to think to know where their body is. It’s just a given, and when they want to do something, they can pretty much get up and do it. If they cannot get up and do it, it’s because they don’t feel like it, or are afraid to, or other emotional reasons. If they do move in a particular direction, or do a particular thing, it’s mostly because they decided they wanted to and then did it, except that’s so automatic that they don’t even notice they’re doing it.

And, in feeling their body, most people can identify sensations like hunger, thirst, the need to use the toilet, etc, and of course since everything else works more (or less, but not so much less it becomes impossible) standardly, they’ll be able to do all that.

Most people also can hold thoughts in their head while doing all these things without the thoughts disappearing or getting jumbled.

Some people have some amount of difficulty with one or more of these things, but not so much that a serious amount of effort — sometimes over a long period of time — will not eventually let them do at least the basics in life.

I don’t have the most amount of difficulty possible with these things, but I tend to have more difficulty with these things than most people in the support groups I was discussing do. (Although I have more ability at these kinds of things than the worst of my records claim that I do.)


Before I put forth much effort, I don’t see much of anything. If I put forth some effort, I see shapes and colors and patterns, but I don’t see “monitor” and “words” and stuff. More effort, and I resolve the existence of such things, and even more effort, and I can read the words and stuff as something other than “gee, there’s words there”.

And similar levels of basicness go with all the rest of these things, including formulating particular ideas about the world and what needs to be done in it.

But it gets more interesting. Most people can get a little weird if they don’t eat, drink, or sleep enough for a bit. If I don’t eat, drink, or sleep enough for a bit, then the amount of effort it takes to do any of these things (”these things” being throwing together the building blocks of perception, reflexive thought, and action) increases greatly. So then I’m putting more effort out for less return, which makes me less able to do the eating, drinking, and sleeping stuff, which in turn makes my effort worth even less in terms of action. It’s like watching economic inflation happen within the course of three days or less, only instead of the value of the dollar dropping, it’s the value of some unit of effort.

This, of course, happens to even totally non-disabled people, too, but it happens much more slowly. In my case it’s helped along not only by the fact that I’m autistic but by the fact that lacking regular meals/water/sleep/etc are my main seizure and migraine triggers.

Now, the seizures were complex-partial seizures. That means that among other things I can carry out a purposeful-looking activity during a seizure, but I won’t remember it afterwards, and the activity will have something seriously screwy with it. It’s some kind of automatic movement, so it can be, my body will just walk up and open a door and walk back in the house and sit down, and then I’ll regain consciousness, but I’ll be more confused than usual and pretty much fall asleep no matter how awake I was previously. Or sometimes it’s just sitting there staring.

So that’s another part of many days we’re talking about there, that were being eaten up by seizures and subsequent sleep. (And if the seizures got out of control there were at times about ten minutes worth of them, or so I’m told by people who were there. And after something like that I needed serious reorienting, on the order of another half hour of repetition by someone else, just to remember my own name.)

And those are triggered in me mostly by lack of adequate food or lack of adequate sleep. (They’re also well-controlled by seizure meds at this point, but at the time I also didn’t have adequate healthcare.)

Then there was just the standard stuff.

Yeah, technically food was just across the room. But in order to even conceptualize the need to go across the room to get it, there’s a lot of things you have to know.

You have to be able to understand that something you can’t see (because it’s in a cupboard or refrigerator, or even just behind you) is still there. That’s at times an enormous leap of abstraction for me. (I eventually left packages of rice cakes and peanut butter lying around the house in strategic locations.)

You have to be able to identify the food, whatever it is, now that it’s lying around, as food.

You have to understand what the purpose of food is.

You have to understand the sensation of hunger as more than just an uncomfortable but totally inexplicable sensation, and you also have to be able to feel the sensation of hunger. (At that point I had untreated severe neuropathic pain, so my entire body felt like it was burning all the time. Hunger doesn’t always show up against that particularly well. I had no idea I was in pain, I thought this was just another inexplicable sensation that had always been there.)

You have to, in fact, connect the sensation of hunger to the need for food, and connect the concept of food to the stuff that’s in the house that you may not at that point be able to see (or identify, if you do see it).

And that’s all just to conceptualize the need to go over and grab the food, and this doesn’t get into how you ended up with the food in your house to begin with, or understood what food you needed to get, and it’s assuming a food that doesn’t require any cooking (which I didn’t always have on hand — my biggest supply of food was a giant tub of rice and a giant tub of lentils).

Now you’ve decided you’re going to grab the food. Then what?

You have to notice that you’re attached to a body that will be able to grab it for you.

You have to know which parts of that body are going to do the grabbing.

You have to figure out how to send a signal from your brain to these parts. And you can only really move one at a time. By one, that’s, like, one. (Or else you can rely on automatic movements, but that’s a different matter.)

So you’re ground control in your brain sending message to spaceship finger. Only, a lot of the time, there’s going to be static in the air or other interference, and before you know what’s going on, your finger either won’t move, or will move the other way.

Or else, you have to start from a bit of you that’s already moving automatically, and then work your way down to the bit that you need to move. So, if your finger is twitching, you latch onto that. You work your way, literally inch by inch, up your arm and other parts of your body.

But now you’ve got this shoulder, and that’s what you’re trying to move, that you’ve got sort of banging up and down but you can’t get it to go side to side.

So you start working on side to side and the up and down part stops working.

And then, if you ever get the whole arm going where you want it to go, you have to calculate a bunch of stuff about where exactly you need to put the arm in order to push down so that you can stand up.

And then you push up, and instead of just standing, you end up running around the house in circles on autopilot, and literally bashing into walls in the process. (This is an automatic movement — you started it with a voluntary movement but then the autopilot movements got control.)

At which point you forget exactly what you were trying to do to begin with, so you run around for awhile being confused and getting out of breath and such.

You realize somewhere along the line that you’re hungry, and that entire first set of things I described plays out all over again, only at this point you’re running around the house because that’s what your body is doing on autopilot while you’re thinking.

You realize the first thing you’re going to need to do is stop.

It takes awhile for the signal to get to your body, but when it gets there, it really gets there. You’re now kind of stuck in one position.

So now it’s back to moving one bit of your body, then another, then another. And when I call this an inch by inch process, and a gradual one, this is again no exaggeration.

You do this in various bits and pieces, and you’re kind of alternating between not moving much at all, and starting a voluntary movement only to have it transform itself into a repetitive and involuntary movement, or else a strung-together bunch of automatic movements that you attempt to ride closer and closer to your destination.

Meanwhile, all the focus on moving your body both drives out all your other thoughts (including what you were doing to begin with) and any focus on the sensation of hunger that would otherwise make returning to those thoughts a more rapid thing (provided the sensation could be deciphered).

This can continue for hours.

Any time a seizure happens, you can lose a few more hours in some combination of disorientation and sleep.

You start ending up with other problems, too. Like, after you are hungry enough, the world starts looking even more distorted, and occasionally seems to tilt sideways on you, and you fall over. And then you have to figure out how to get yourself off the floor, once you figure out that you fell over and figure out what a floor is and all that kind of thing. At which point, again, you’re going to be forgetting you’re hungry, and again, whole initial process repeats.

There are almost no photos of me during this time period (because I was very isolated), but people who’ve seen them say I looked anorexic. Except, I wasn’t anorexic, I was just capable of getting lost from one end of a room to another and of forgetting about what hunger was and stuff like that. I had no shortage of hunger, or even willpower, but in order to act on all that willpower, you have to have a place to aim it, and you have to be able to remember what you’re trying to do. I could remember exactly what I was trying to do, as long as I didn’t move or start thinking about anything else.

And there was that whole jumble of understanding what’s going on, and then understanding what to do about it, and then understanding what to do about it with the specifics of body movement, and then prodding my body into that kind of movement, that got very disorienting after awhile, and did often end up with prolonged shutdown and seizures and so forth.

And the less food you have, the less energy your brain has to think with. And since most of my problems were thinking problems (or more specifically “thinking of all these things at once problems”, is a shorthand way of putting it), this just meant things got worse and worse, until I was at the point of serious perceptual distortion and physical collapse and so forth. (These things will happen even to a non-disabled person who is malnourished enough, it’s just easier to bring about in someone who’s already having trouble with some kinds of thinking.) (Oh, and also, I had two enormous bins of dried food that needed cooking, that were my main food items, so most food was more complicated than the rice cake scenario.)

posted by silentmiaow at 3:06 PM on January 26, 2007 [13 favorites]

Also wanted to mention, a vast discrepancy between academic skills and daily life skills (at least in some environments) is very common in autistic people. I have a friend who is well-educated, has a good job in the computer industry, can speak fluently at least some of the time, and almost starved to death a couple years ago for the same reasons. (His level of starvation far surpassed any level mine was allowed to get to, in part because he is seen as not needing help because of his academic skills.)
posted by silentmiaow at 3:12 PM on January 26, 2007

For some reason the begining of her 'speech' reminded me of the Islamic call to prayer.
posted by oxford blue at 4:21 PM on January 26, 2007

Miko -- I obviously can't speak for everyone who uses the term "neurotypical", but I was taught it as a semi-playful description of people who don't fall within the autism spectrum. It's mostly used as a reminder that "normal" is a subjective term and to remind people to keep an open mind when dealing with those who are autistic. In my experience, it usually isn't used in a negative way.

i don't know the specific origin of the word, but it's pretty widely used in autistic groups.

I mainly use it as a reminder to myself that my way of doing or thinking of things may not be the only or the "right" way to do them and that I should be more open to the experiences of those who view the world differently than I do.
posted by aine42 at 4:26 PM on January 26, 2007

Silentmiaow - thank you for reaching out with this. I'm glad to understand autism a little better.
posted by moira at 6:07 PM on January 26, 2007

Wikipedia on 'neurotypical'.
posted by Miko at 6:28 PM on January 26, 2007

Wow, I just came home from a night out, it's 7am where I am, I was tired as all get-out, and I thought "Oh, I'll see what's on MeFi while i wait for my body to get sleepy." Then I read through this whole comment stream.

Great FPP, maudlin.

In contrast to a lot of commenters on here, I'm more interested in silentmiaow's point about personhood than her point about language. Certain professionals like psychiatrists are saddled with the responsibility / imbued with the power to bestow different kinds of personhood on people based on their presumed capacities. Although "person" may be just a social construct, it's a construct that has some very material repercussions. So, the acknowledgement of her actions as sensorial awareness and engagement rather than dissociation may mean the difference between independent/assisted living and institutionalization.
posted by LMGM at 10:07 PM on January 26, 2007

I just randomly found this in a book, oddly enough. For those who don't know, Asperger's syndrome is a term some people use for a form of autistic person who speaks on time and has a fairly typical progression of language development. But other than that, pretty much things that apply to someone with an Asperger diagnosis can apply to a person with an autism diagnosis and vice-versa, so when they say "Asperger" here it's not exclusive to that:

During adolescence, some girls (and sometimes boys) with Asperger syndrome can develop a special interest in fantasy worlds. The interst can be in science fiction and fantasy but also fairies, witches and mythical monsters. An intense interest in the supernatural could be confused with some of the characteristics associated with schizophrenia, and the clinician needs to be aware of the qualitative and functional differences between a special interest in the supernatural and the early signs of schizophrenia.

-Tony Attwood, The Complete Guide to Asperger Syndrome, p. 181
posted by silentmiaow at 11:00 AM on January 27, 2007

How do you figure the dealer knew to give her LSD? I suppose in her language nothing looks quite like "give me what Dr. Leary took."
posted by basicchannel at 11:38 AM on January 27, 2007

At the time I spoke (at least superficially) better English than I do now vocally, and... well read zilari's comment again.
posted by silentmiaow at 12:02 PM on January 27, 2007

for the record, a small but not uninteresting point you mentioned over on u2b regarding how you actually put together the video seems worth copying here:
"Done different times (not always different days), edited together, then sung over the top of in response to what's going on in them. Has to do with having a video camera that only records 1 minute 27 seconds at a time."

more (tangentially) on this subject here.
posted by progosk at 1:30 PM on January 27, 2007

What's going on here?

I've seen your video, silentmiaow, and I've seen your website.

Anna, I've also see your reply to silence.

silentmiaow, what is this woman talking about? She seems pretty distraught. What do you have to say about this?
posted by redteam at 4:46 PM on January 27, 2007

redteam, what is your point? Do you not believe Anna's reply? It seems pretty convincing to me, unless you believe she's making it all up, which would mean there's a whole conspiracy against this person who claims Amanda has "stolen her life." I watched that video, and it's sad and pathetic and completely unconvincing: she sounds like one of those people who tries to sue popular writers/musicians because "they stole everything from me!" I mean, "someone who claims to be autistic"? Loving the Beatles is damning evidence? I don't think Amanda needs to respond to this crap.
posted by languagehat at 5:13 PM on January 27, 2007

What I have to say is that she's wrong. She believes she's right, but she's wrong. Anna has already answered a couple of the accusations. I'd heard of her before, but only as someone who routinely accused autistic people of mocking her or faking being autistic, not any details. She even told me when she met she had a fear of being imitated, I just didn't realize it was going to extend to an aversion to the "Oh I did something similar to that, only different" stuff of ordinary conversation, or to elaborate conspiracy theories about why I'd have "imitated" her before I even knew her. (If I have something in common, it's because I imitated her, if I have something vaguely resembling her, it's because I cleverly imitated her, if I have something not in common, I must have imitated someone else and/or it's proof I'm not autistic, and if anyone I knew actually backs me up, they're my "minions" (her word).)

As far as I'm concerned it's drama I don't have a lot of time for, but I've got my diagnostic papers on the web at this point, and anyone who wants to meet me (and has not been told that I want no contact with them) is totally welcome to meet me at the place I receive services (the place in the last paper I have on the "Official papers and stuff" page on my blog), and talk to me and my staff and/or case manager about whether this is my life or not. Because it sure looks like my life to me, and not a whole lot like hers even, beyond some superficial resemblances.

Other than that I'm sick of the whole thing, but the invitation to meet me is a genuine standing offer for anyone who either thinks I didn't write this or thinks I'm not for real, because I don't want my message to be lost because people don't believe I exist.
posted by silentmiaow at 5:17 PM on January 27, 2007

readteam et al.: As someone who has met silentmiaow in person, I can attest that she is quite real, and I have no reason whatsoever to believe that she is not exactly who she says she is.
posted by DaveSeidel at 5:39 PM on January 27, 2007

Thank you for responding, silentmiaow. It's certainly one of the strangest accusations I've seen online in a long time. Also, it's interesting because of its implications for trust networks, personal identity, objective identity, how your narrative forms your identity, and even the dynamics surrounding one's identity when it is referenced to or defined online.

The lengths you've had to go through to assert your existence are pretty shocking. I'm also surprised at the behavior of her adherents (I've seen some on your Youtube comment threads) and how simple it can be to start a messy battle with such an accusation.

Your stories are absolutely fascinating. Being introduced to your world through this amazing thread has made for an incredibly enlightening afternoon. Thank you so much for your willingness to share.
posted by redteam at 5:44 PM on January 27, 2007

Yeah, Dave and his pleasantly nerdy family took me and a friend out for Japanese food once, and his wife came with me to AutCom and read my speech for me, which also involved being around me day in and day out (during which it would be impossible for a non-autistic person to sustain a performance of looking like me, especially since "looking like me" at that point included some highly overloaded neurological states that are impossible to replicate without experiencing them, as in right this instant I would be incapable of replicating my appearance at that time because my brain just isn't doing the things to my body that would create that appearance).
posted by silentmiaow at 5:57 PM on January 27, 2007

Anna just pointed out to me on the phone that since I showed up people have dropped a lot of the debate about language and personhood, and that they might be doing it because they think I'd be offended or something. And so I'm noting here that I'm quite aware not everyone shares my views and that even if I don't like it if someone says that some people aren't people, or some things or not language, or anything like that, my discomfort doesn't trump their right to debate it, so, if that's why anyone stopped, please don't feel the need to refrain from discussion of language or personhood etc. because you think I might not like it (if in fact that's what's going on).
posted by silentmiaow at 6:41 PM on January 27, 2007

I wanted to add another thanks to everyone involved here. I'm reading through the essays at ballastexistenz and it's intensely eye-opening. I had no idea about so much of this stuff.
posted by bink at 8:30 PM on January 27, 2007

I suspect this video might amuse MeFites.
posted by five fresh fish at 8:36 PM on January 27, 2007

fff: it did. especially the parsing of omg.
posted by jouke at 11:57 PM on January 27, 2007

Those people who have appreciated this thread might want to read some of Donna Williams' books. I read the first two when they came out: Nobody Nowhere and Somebody Somewhere. That was many years ago, but they have stayed with me as two of the most extraordinary and courageous books I've every read.

Much of what she describes contains the same mystery exhibited by silentmiaow's writing: an extraordinary ability to systematically analyze and describe her experience combined with a simultaneous utter unawareness of aspects of the world that most people take for granted.

Donna Williams didn't get any diagnosis until she was an adult and had essentially written her autobiography. She took what she'd written down, walked into a hospital, found a door that said "psychiatrist" on it, gave her book to the person inside, and said "what am I." (That description is from memory, and may be inaccurate in details, but I believe it's essentially correct.)

Prior to that her life was made tremendously more difficult not only by the disconnect, but by the fact that neither she nor any of her family or friends understood the nature of the disconnect.

An example that comes to mind relates her described inability to generalize from specifics. So the fact that she knew how to use silverware to eat at home did not translate into the knowledge of how to use it elsewhere, or even the fact that she was supposed to use it elsewhere. This was hard for others to comprehend or believe.

The level of effort that she describes making just to get through life was heroic and inspiring.

There is so much more to respond to in this thread, but other things call. Thanks to all who have contributed their comments so thoughtfully, and especially silentmiaow for creating her video and then for jumping in.
posted by alms at 8:18 AM on January 28, 2007

There are, in fact, a whole slew of books by autistic people out there (and it's been too long since I updated the list).

Another author I recommended on the thread that sprang out of this one, was Dawn Prince-Hughes. She was also not diagnosed until adulthood. Some of the first people she learned to socialize from were gorillas. Her body language is consequently very gorilla-like, and a bonobo she knew even used the sign for "gorilla" to refer to her (but not to other humans). She had actually been homeless and working as an exotic dancer for awhile when she finally met the gorillas, and fortunately found a better job than that as a result of observing them so thoroughly.

She's written two books I mostly like:

Songs of the Gorilla Nation: My Journey Through Autism, which is an autobiography, and Gorillas Among Us: A Primate Ethnographer's Book of Days which is full of gorilla observations.

She is writing another one about raising a son, I think.

I met her at a book signing and she was crying because someone had just shot a gorilla in a misunderstanding that could have been averted with proper knowledge of gorillas, and told us all about it before she'd get into anything about the book. There were several autistic people in the audience and we all got into a discussion of connections with animals and such. I showed her a picture of my cat. We also discussed the fact that far from lacking empathy, a lot of us seemed to have more of it than usual, sometimes more than we could stand.

Her work is interesting not just because of anything related to autism, but because of a lot of the things she says about animals. (In a very different way than Temple Grandin generally does.)
posted by silentmiaow at 10:00 AM on January 28, 2007 [1 favorite]

Despite my wisecracking nature I really respect your writing, silentmiaow. Thanks for opening a window onto a different kind of existence for me. I don't know any people who have autism, and in a way you are not almost the internet's official ambassador for autistic folks.

posted by Sukiari at 4:50 PM on January 28, 2007

I really hope I'm not.

Because we are very different from each other in a lot of ways, even if a lot of things are similar, and I didn't intend to land in any sort of role that paints me as like everyone else. (Especially because a lot of aspects of my life, while not unheard of, are not the most common variants or anything.)

Even the video was not as much about autism or any personal "taking people into my world" (whatever that ends up meaning), as it was about what kinds of language and personhood are instantly recognized in a given culture and what kinds are not.

My two favorite responses to this video were, one by a guy who'd had brain damage in an accident awhile back, and he'd experienced this kind of dehumanization in rehab, and the sense that using words was considered the only way to communicate, being told to him in pretty harsh ways. The other was a discussion on a blog by women of color, about Mexican-American students who were treated as inferior and stupid if they didn't speak English as well as some other students did. Because both of them didn't focus as much on the messenger as the message, and then they took the message and went around applying it to other situations, which is more how I intended it.

I talk from an autistic perspective because I'm (among lots of other things) autistic, but I'm generally talking about broader things in the process of doing so.
posted by silentmiaow at 6:07 PM on January 28, 2007

Thanks for this. There is so much to know about people, so little damned time.
posted by stavrosthewonderchicken at 6:42 PM on January 28, 2007

what kinds of language and personhood are instantly recognized in a given culture and what kinds are not.

And isn't it about what people find meaningful? That's a big part of what culture is. Sometimes I've felt I was in a culture of one -- and now two, lucky me. When I take the online autism test, I'm just on safe side of the borderline. I do hear and smell things others don't. Things that are there. I am not dissociating. Other people will smell or hear them in a few minutes when they get stronger/louder or lead to some grossly perceptible conclusion. I just haven't been thrown in an institution for it, but I do feel for those who have been. The reality is only what's average really gets accommodated, unless one puts up a protracted fight, with group backing. The middle of the curve is easy to hate -- tyranny of the majority.

Near-silence and attunement to small, quiet (to me, having the equivalent excitement of fireworks for most people) details are very important. The only way to get these comfortably seems to be in a canoe on a northern lake, far from roads, dominated by birdcalls, the smells of the mosses and pines, the slowly shifting colours of a northern sunset.

So, silentmiaow, thanks for dropping by. I had wanted to email you from your site to invite you, but couldn't find the link for that.
posted by Listener at 9:00 PM on January 29, 2007

I was impressed immediately with silentmiaow's clear parsing of the english language. The ability to speak without painting assumptions on other people- without implying, "I know your experience of the world" is something that comes with great care.
silentmiaow- your integrity rings like a gong.
Thanks to all.
posted by pointilist at 7:44 PM on January 30, 2007 [1 favorite]

I have no sound card at work so I haven't watched the video yet, but I am reading over the "whether I really exist or not" link from the YouTube profile, and I am rather surprised to hear of a "service cat." I know there are service animals of all types, from dogs to monkeys to pot-bellied pigs. I also know there are mental health reasons for requiring a service animal, I am not surprised that an autistic person would have a service animal.

But I have had cats my whole life, and I cannot picture a cat as a service animal. Cats do what they want, when they want, pretty much. They aren't keen on traveling to the grocery store with you. They are a source of emotional comfort, but cats can do that without being labeled "service cats."

silentmiaow, if you are still reading this thread - what unique services does your cat perform for you? What sort of training have you used with the cat? I am not asking because I think you are faking or shouldn't have a service animal, I am just astonished that somebody managed to train a cat to be a service animal.
posted by etoile at 11:50 AM on February 2, 2007

silentmiaow's website named Yahoo! Pick yesterday.
posted by ericb at 4:22 PM on February 2, 2007

I am struck by a number of connections to the Reciprocality project—the idea that typical people aren't really paying much attention to the real sensory detail of the world they live in, the attention to different modes of thought and their value, even the connection to the cat personality. Fascinating.

I have an acquaintance I've known for 14 years who is autistic, and I have a great deal of sympathy for the autistic movement (and I score about 28/50 on the Newsweek quiz), but I've never heard the internal experience of an autistic so eloquently described. Bravo.
posted by eritain at 8:16 PM on February 2, 2007

Okay, regarding the cat, there actually is apparently an entire branch of service animals that are cats, most of them use clicker training. That's not how it worked with this cat though.

When I first moved out, I was in a situation where the cat was pretty much the only person consistently around me. I found her at a shelter and she was giving me a very intense kitty-stare, so I took her into the little room where they let you play with the cat, and she wanted to explore and run around more than she wanted to hang out with me, and I loved her for it. So I took her home, where she proceeded to climb everything in sight and get into everything and get herself stuck on top of a few things, but mostly (aside from curling up under the blankets with me that night) not directly interacting with me much.

I noticed that she flinched and ran away when directly approached (especially with hands), so I mostly kept my distance. Gradually she started coming to me more and more, and eventually got downright insistent (especially over meals -- I've never met a cat before who would try to steal a rice cake, but she's one of them).

So we were getting to know each other, and this was a time period when I had no services. Which meant all that stuff I said above about movement problems and seizures and hunger and so forth was going on.

Take this with caution because of course I can't get into her head, but she seemed to start thinking of me as a very large, very dumb kitten who needed her constant guidance in order to do anything. She gave me looks I've seen mother cats give their kittens before.

Anyway, I suspect this originated with her trying to get the cat food. But she figured out ways to walk across me and nudge each part of me into motion, biting if necessary, until I could get started moving again whenever I froze or got confused.

She also would drag me outside with her (she liked to follow me everywhere outside -- this was in a somewhat rural area) by grabbing me by the leg and yanking.

And I started finding something odd when I had seizures, which was that beforehand she'd start getting really concerned about me and try to lead me to the couch. (She also gets concerned and starts poking at my chest a lot before I notice I'm having an asthma attack, although I find her solution of then sitting on my chest to be a bit counterproductive, especially since I'm allergic to her.)

Basically I think our situation initially was one of mutual survival and that's how and where the training took place. That and we genuinely care about each other.

A lot of people who've met her have trouble believing it of her, too, because she is so stereotypically Cat in a lot of ways -- fiercely independent, seemingly aloof (although that one can be said for autistic people when it's not true either), etc. (That and grouchy towards almost anyone who isn't me.) Then they see me get stuck at some point, and they watch her run over to me and start running up and down my body nudging and nipping and stuff, and kind of do a double-take. She's also fairly protective of me at times.

When I need her help and she hasn't noticed already, I start making the same noise kittens make when they need help, and she usually comes running.

Interestingly, it usually takes a lot more effort to train humans to do these things. I've at the moment only got one human around who's remotely capable of assisting me when I get stuck physically, and she's also autistic. She's demonstrated how to do this to a number of staff, but they never seem to grasp the mechanics of it. Then again, I'm apparently better at getting her compression boots on than any of her staff, despite the fact that they do it way more often than I do -- I only do it in emergencies. Go figure.
posted by silentmiaow at 8:26 AM on February 3, 2007 [2 favorites]

silentmiaow's interview on CNN available here.
posted by ericb at 11:31 AM on February 22, 2007

welcome silent : >

we had a big Ashley thread here--i'm glad to hear your view.

I was wondering (and i'm sorry to pile on with questions) about the things you learn to do your way and the things you learn to do society's way or the regular way or whatever--and the fluency of both. Is it harder to do things in the world the way I would or others who aren't autistic? Does it seem unconnected or weird or pantomime-ish or just "wrong"? My question is connected to this, above: I have certainly benefited from learning not to hurt people, and learning how not to hurt myself, and so forth. But not through behaviorism, which always only had temporary results. I had to learn how to spot and stop things before they started, and I had to learn why not to do things.
It was not a therapist that taught me that. It was another autistic person who'd been there. In fact many of the most important things I've learned in life have come from people who've been there, not people clumsily writing behavior programs for behaviors they don't understand.

I guess i'm asking whether the "cause and effect" of most behaviors we take for granted, and rarely question because they're effective in doing things and negotiating in the world are harder to learn and whether they seem "right" to you. Like, when we're little, most of learn about stoves=hot because we touch them and it hurts. This goes on for everyone our whole lives--whether it's a physical thing or learning a new skill, or how a new office or home is laid out, or where a bathroom is in a restaurant, etc. Do you have to do things your way absolutely, or is it just more "right" to do so? How do you see your way of doing things and negotiating the world as opposed to the majority way?
posted by amberglow at 7:59 PM on February 22, 2007

(and about the cat--animals are really good at recognizing signs of distress or illness--i've read they use dogs now to smell cancer or something in people's breath--it's amazing)
posted by amberglow at 8:02 PM on February 22, 2007

oh, do you think it would be possible to build a grammar to help parents/friends/the world communicate? Sorta like sign language developed?

Could it be standardized and taught, or would that not work because autisim is so individually expressed and experienced? So many parents would kill for one, if it was possible.
posted by amberglow at 8:39 PM on February 22, 2007

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