Some side-by-side analogies

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In the recent Wired article, Volkmar used an analogy that said that acknowledging autistic people’s right to remain autistic, or acknowledging our capabilities, went like this:

Yale’s Volkmar likens it to telling a physically disabled person: “You don’t need a wheelchair. Walk!”

The Autistic Bitch from Hell responded, partially, with:

He deliberately promoted a false stereotype that all autistics need extensive help from psychiatrists to do the simplest things in life, while conveniently ignoring the large number of autistic adults who already were (and, in some families, had been for generations) successfully integrated into society.

A more accurate wheelchair analogy might be to say that Volkmar and his accomplices grabbed people who were walking along the street, forced them into wheelchairs, tied their legs so that they couldn’t move, and then pointed to them and said, “Look at how much help these unfortunate people need because they can’t walk without their wheelchairs!”

And all of this reminded me of an analogy I made several years ago for how psychiatry treated me when I was essentially terrified, despairing about my future, and losing assorted skills day by day while wondering why on earth I couldn’t sustain my previous abilities in some areas. I had no model for existing as a person like who I was, so I variously tried to escape this reality by coming up with an imaginary world that was better than this one, trying to decide that dreams were being awake and being awake was just a really bad dream, trying to force myself to forget that reality existed, trying to turn myself by force of will into assorted kinds of non-autistic people, and eventually attempting suicide. I eventually also figured out that none of that is the best approach to the situation, but I gave it all a really good try before giving up on it as an effective coping mechanism. :-P

The analogy seems really apt when stuck next to Volkmar’s and the ABFH’s, so I’m not even going to add to it:

To use an analogy, it was as if I had wandered into the middle of the street, oblivious to any danger in standing there, obviously missing some combination of knowledge and ability to apply that knowledge, but essentially still me. Someone had run over me and broken my leg. Then, instead of helping me out of the street and fixing my leg, they ran over my other leg and broke that, and then both my arms. Seeing that this was not working, they kept running over my legs and arms and telling me that there was something wrong with me for not getting up and walking away. Then, they got out of the car and started beating me over the head and screaming that there was something wrong with me. This is an analogy, but I believe it is a good analogy to what the system does to people who are different, or simply in the wrong place at the wrong time.

It didn’t just happen to me; it was happening to everyone around me, too. […] The puzzling thing was that while there were indeed many sadists and power-trippers in the system, there were others who no doubt went along with this puzzling behavior because they felt pressured to do so, and others who had been taught that this somehow constituted “help.”

I think those analogies are all interesting to line up side by side, since they’re all using walking as an analogy for other things, but at the same time going very different places with the same ideas.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

37 responses »

  1. Yup, that’s psychiatry. I’m in a slightly better position now. I’ve still got the broken leg, but instead of running over me again or fixing it, they say that it’s part of neurodiversity.
    Literally, I have an enormous bruise covering the whole of my calf, my lips have been cracked for weeks and I have a sore throat so I’m going to the doctor.

  2. Er, my enormous bruise is apparently nothing to worry about, just a muscle tear which looks bad and that I could’ve done if I landed awkwardly off a step or something (not that I recall doing anything like that) but there is no pain or swelling and no other bruises.
    I do not really have a broken leg, but I have had medical conditions overlooked because I had a psychiatric diagnosis and I know other people who had that happen too.
    Here is a not too serious example. I have been prone to ear infections, and when I was diagnosed with schizophrenia and complained about my ears, I was given neuroleptics to calm the voices. As an autistic I was told I had sensory sensitivity, a neurological condition. I noticed I got more infections when I was going swimming regularly. The doctor who bothered to look in my ear said it was infection, but I had to go to the hospital as it had got so bad. The infections responded to antibiotics and it seems I had some underlying excema. I stopped getting infections when i stopped swimming but my right ear drum is damaged now and loud noises or listening with headphones is too painful.

  3. Heh. A variant of these arguments that I’ve found myself using rather often, of late, is this rebuke:

    “You don’t cut someone off at the knees and then punish them for ‘refusing’ to walk.”

    (not if you’re really interested in being of actual help, or having any sane ethical grounds for justifying your actions, that is — where “you” refers to those whose interests depend on being perceived by others as “trying to help”)

    It applies in a wide range of social contexts. Far too many, unfortunately.

    :-\

  4. tinted: Yeah, the total lack of medical treatment for real problems happened to me too (both when I was dxed with schizophrenia and when the dx was other things), as well as zero dental treatment (except for an “ADL program” in toothbrushing at one point) and my parents being told that people like me didn’t really need tooth care anyway.

    Then there was the time I was vomiting all the time from an intestinal obstruction, and the place I was at did take me to an emergency room, but once they saw my labels they gave me Ativan and crackers and sent me home. (I eventually needed to return to the emergency room to have the crap literally dug out of my bowels by someone sticking their hand up my butt and breaking it up. Only at the point when I was looking pregnant, bleeding at the butt, and had a bowel movement really obviously impacted near that area and not responding to enemas did they take it seriously.)

    Currently I’m in a better situation medically than before, because I eventually got a doctor who said “I’m here to treat your medical problems, whatever happens between you and your psychiatrist isn’t my business.” She identified and treated several longstanding things that other people had missed. And now I have a different doctor who is also good about not being prejudiced this way. And now that I have a track record of all my complaints ending up having some legitimate and testable basis, they’re actually respecting me more.

    But in the past I had things like severe back and neck pain first written off as all in my head because I was a psych patient and because I was extremely flexible, and then written off as some weird new age spiritual problem that I was encouraged to work on my spiritual life in order to get my chakras less messed up or something. (I wrote about that one here.)

    But I know I’m lucky to have found these people, because I still sometimes encounter professionals who take one look at me and think I can’t possibly be reporting anything accurately.

    I still remember that story about the guy who was diagnosed as schizophrenic and who ran into the emergency room saying the devil was squeezing his heart, and they tried to treat it as a hallucination until he started having a heart attack right in front of them. I found that story on a website by a doctor who tells all his med students that they need to listen to people with psych labels even if the complaints sound really weird, but I’ve never been able to find it again. I wish more med students were taught things like that.

  5. Today’s med students often are taught about cultural differences in how patients describe illness, which can be very important when providing medical care to minority and immigrant populations.

    As part of the same lesson plan, med students should be taught about the social and language differences of neurological minority populations, which I would characterize as a similar issue of cross-cultural communication.

  6. Amanda, I would have been terrified if, like you, I had been losing skills day by day and not being able to sustain previous abilities in areas where I had them.

    There was a considerable amount of knowledge about autism available in the United States in the mid to late 1990s with miles of shelves of books and studies on autism (as well as what was then published on the world wide web); but because your autism was not of the textbook type, I guess your psychiatrists/psychologists didn’t really know what was in your best interests. However any competent psychiatrist or psychologist would have been able to obtain an adequate knowledge of autism, at the very least.

    It intrigues me that you “had no model for existing as a person like who I was”. You seem to me to be very much your own person to need any models. Where did you find the model you needed, or did you discover that you did not need a model?

    Another wheelchair analogy from the opposite viewpoint, would be if a wheelchair is taken from someone who can just about manage to walk without it, and they’re told they don’t really need it.

  7. That was a sentence, not a collection of individual words. If you ask me something that relates to the meaning of one specific word in the sentence, I’m not going to be able to respond, because I did not say the sentence because of the meaning of that specific word, I said the sentence because of the meaning of the entire sentence taken as a whole without being chopped up into pieces.

    I fully understand why someone would read the individual words, and can even picture doing so myself if it was someone else, but this sort of situation never fails to make me feel stupid (which I know is some kind of internalized whatsit, but it does).

    So instead of answering questions about a particular word within a sentence, I’ll rephrase: I had next to no idea how someone like me could possibly survive, let alone do anything beyond survive, and I was not capable, due to complete lack of knowledge of most of even the very basic things necessary or supports available, of doing anything useful about the situation.

    As for the knowledge of autism that was out there, enough was known about autism for me to be immediately recognizable as such to my psychiatrist, and to even have a proctologist ask my parents if I was autistic immediately upon glancing at me, so I’m not sure what you’re talking about in terms of not being recognizable as that.

    I’ve also read a good deal of the literature that was available at the time that I was diagnosed, and there was still a good deal of debate as to what autism actually was, and most of the theories about what autism was were completely off-base in one direction or another. Much writing on autism equated it with either psychosis or an intellectual disability, or both. There was plenty of writing about autism, but quantity of writing is not the same as quality of information.

    You seem to have a vast overestimation of what even a “competent” professional in the field would have known about autism at the time. There is an enormous lag time between when information becomes available, and when that information becomes well-known to the majority of clinical professionals. Given that a lot of the information available even at the time was not particularly accurate information (except possibly when it came to identifying autistic people), the lag time was such that even that inaccurate information was not fully absorbed in the profession until long after then.

    As far as understanding how autistic people’s minds work and how to best teach and interact with autistic people, that is barely beginning to be understood at this point in time, let alone 13 years ago when I was first diagnosed. I can’t imagine any competent professional today thinking there was sufficient information 13 years ago to understand autism, because most will admit that right now there is not sufficient information to understand autism, and that many things that had been “common knowledge” about autism are now being questioned as inaccurate.

    I’ve looked up a lot of what information was available at the time, and it was definitely not all that accurate.

    There were the last psychoanalytic holdovers attempting to claim that autism was caused by various events early in life (there are still a few of those around, so I guess not the last, but the last time that there was a sizable number in America).

    There were people promoting the idea that autistic people had weak central coherence, a theory that is now having a lot of holes poked in it, and that did not offer detailed information about how to interact with or assist an autistic person on a day-to-day basis.

    There were people promoting the “theory of mind” stuff, saying in fact that autistic people had no theory of mind, as in no ability to understand that other people had minds, or that we ourselves had minds. That has massive holes poked in it by now, and the only way that term has survived is by making it mean more and more different things that it didn’t originally mean.

    And there was only one paper out on the kind of loss of skills I was experiencing, and it was a one or two person case study, not the widespread studies that started coming out in 2000 and later. Which is why I was not recognized as having it by others until 1999 and not diagnosed with it until 2000.

    Basically, a professional would have had to be exceptional, rather than competent, to understand autism particularly well at the time when I was diagnosed. Competence would have looked like being able to recognize it and distinguish it from other things, not being able to understand it. I have met and read things by people considered to be among the top experts at the time (and in many cases even now) and it’s clear that their expertise lies in describing what autism looks like and memorizing lots of things about that, not in understanding autistic people.

    And I think my initial psychiatrist was actually pretty exceptional in his ability to notice my difficulties in understanding the nature and purpose of language as well as the meaning of the words (despite speech that was superficially good when I was capable of it), my difficulty processing information in standard ways, my extreme passivity, my extremely uneven abilities, and my unusual sense of who I was as not too separate from what was around me. I believe this is because, in addition to reading standard literature, he had known a number of autistic people (and been observant enough to look past stereotypes), and he had also read books and attended lectures by autistic people describing their experiences. Instead of telling me I was autistic, he told me that I reminded him of Temple Grandin (not by name, just by describing her and how she thought and what her life was like). So he would have fallen into the “somewhat exceptional” category and even he was lost as to what to do about a lot of these things.

    Add to all this the fact that when you’re actually a captive of the system, the people that you meet on a day-to-day basis are neither doctors nor people with a lot of specific training in whatever sort of person they think you fall into the category of. They’re either nurses, assorted staff with assorted titles, or teachers. I remember watching staff and nurses at one place, say that a boy there was not autistic, because he grabbed people’s hands in order to lead them places. They didn’t know that this was actually so common among autistic people as to be a stereotype in itself even then. They did absolutely nothing useful for him, they just tied him to the bed at night to keep him from getting up, and observed him during the daytime. Their level of knowledge of autism came from watching a special on the Kaufman family on TV, which isn’t a great way to learn a whole lot.

    Basically… you seem to be coming at the knowledge people had, and the ways it would have been applied, in a very theoretical way. The reality of what information people who work in the system have, and how competently that information is applied, is very different from what theoretically was available in book form somewhere or another at the time. And I’ve seen what was available at the time, and it wasn’t even that informative. Aside from all that, you might be forgetting that a lot of that field has not changed or improved greatly over time in terms of what happens to people who become long-term patients in it. It becomes not about solving problems, but about particular power relationships that mirror the Stanford prison experiment more than they mirror any other area of research in psychology or psychiatry. The exceptional people who work there are the ones who manage to do something good for people, not the other way around, and I certainly think there need to be more of those.

  8. I only encountered one blatant sadist; but being repeatedly run over, and then berated for failing to get up, in the name of ‘help’ is something I’m very familiar with. The curious thing is that people who can in the abstract see the wrongness of that continue to participate in a system which is predicated on running people over until the damn’ well get up, and fail to observe their own runnings-over of other people.

  9. How about this analogy – you take a newborn bat and completely restrict them from any opportunity to learn to fly, meanwhile trying to teach them to walk, and by adulthood they’re a bat that can neither fly nor effectively walk. Because they never got the opportunity to learn to fly and now their wings are atrophied so it’ll be difficult or impossible to fly, and they never were designed to walk.

  10. . The curious thing is that people who can in the abstract see the wrongness of that continue to participate in a system which is predicated on running people over until the damn’ well get up, and fail to observe their own runnings-over of other people.

    I’ve noticed that as well.

    As far as blatant sadists go, I encountered a few, but they were quite memorable. One place I was at also had the sort of culture of violence that Dick Sobsey talks about, among a lot (but not all) of the staff (and certainly not my psychiatrist there, who took repeated steps to protect me).

    I think some sadistic people work in institutions of all sorts (from psych to nursing homes to whatever) because in the sort of surrounding environment they’re in, and given who their victims are, it’s harder for them to get caught. Especially if they become proficient at cloaking their violence or attempts to screw with people’s minds, behind the guise of ‘therapy’ or ‘treatment’. It’s disturbing that most of the scariest people I’ve ever met work in the ‘helping’ professions.

    And then there are people, probably far more of them, who are like you describe: They honestly think they’re doing the right thing, even though the “right thing” they’ve been trained into is pretty wrong. But they’ve read or been taught that doing this to people is “helping”, and given some theory behind it, so they really believe it is help, and are baffled at the notion that it might be harm.

    I’m reminded also of the “benign” incompetence of many middle-class social workers in assorted programs set up for poor people without actually bothering to consult poor people, and ending up with incredibly condescending, patronizing, paternalistic crap being offered that doesn’t help anyone but does leave the assorted do-gooders with a feeling of having done something good.

    I’m also reminded of the sort of hospital staff immortalized (by someone who used to be one) in My Contaminated Smile. An excerpt (in case people don’t feel like clicking the link):

    My workday started when the nurse handed me the duty list. It was my job to do what was on that list and also to answer the call lights. I pitied those poor people. They needed my help. I had to do something to make their lives better: adjust the bed, reposition them, open the curtains… and never know or ask if that’s what they wanted at all.

    Completing the duty list was helping the patients. Answering call lights was not my idea of help. When I saw a call light flash above a patient’s door, dread and fear came over me. A call light meant that a patient wanted something unknown, something not on the duty list, something I might not know how to do, something I might not want to do.

    If a patient dared ask for any of the above, here came The Smile. Tilting my head 35 degrees to the right, I contorted my face into a large, painful, cheek-to-cheek smile, exposed my teeth, glared at them and said “I’ll help you in a little while. Other patients need me right now.” Then I could get back to the real helping.

    Helping reduced suffering and made me feel good. After I had finished acts of help, I waited like a vulture for expressions of gratitude. I’d helped, hadn’t I? When thank-yous weren’t forthcoming, it was clear to me that those people weren’t even human enough to be grateful.

    To get the thanks I deserved, I sometimes stood over the bed, behind The Smile. In a scolding-wheedling tone I’d ask, “Now, aren’t we forgetting something?”

    If ever a patient refused my help, I’d use The Smile. Behind it, I hid what I truly felt, disgust: You’re pathetic. You make me uncomfortable. Helping you eases my discomfort about your existence, earns your gratitude, and gets me out of your room, quick. You say you don’t want my help? Then I’ll just have to make your life miserable.

    How could anyone refuse that smiling face?

    If anyone did, I’d lean over their bed again, smile more forcefully, and say, in my best holier-than-thou voice, I’m sorry but, Doctor’s orders, you know. Smile. Don’t make me get the nurse. Smile. It’s for your own good. Smile. If you ever want to go home, you’ll let me do that. Smile.

    I think that’s more common than actual sadism, but certainly is the exact kind of destructive I was describing, and I’ve seen that sort of thing in just about every ‘helping’ system I’ve ever encountered, although some seem to lend themselves to it more than others. I’ve also seen a couple truly sadistic people who hide behind a very similar persona, but mostly (my guess anyway) because that persona is so common in the profession anyway that it’s a good and easy way to hide.

    That person, by the way, realized how messed up that was when he became disabled himself, so there’s always hope. :-)

  11. Amanda don’t post this if it is too personal..Mom

    Philip,

    I am so amazed at your post…Were you the parent of an autistic child in the 80’s or before? How about two children? If so your post might have read differently…

    “Amanda, I would have been terrified if, like you, I had been losing skills day by day and not being able to sustain previous abilities in areas where I had them.”

    It was horrific to watch…and I believe from
    what I read…little has been written about
    this type of loss….As a parent you feel helpless..As the person going through it the feelings are far beyond terrifying…

    I think from what I read from British research maybe 14% of autistics have this type of pattern.
    No there is not a lot of research out there on it
    and I remember Amanda’s psychiatrist saying there
    was such a gap in knowledge and so much more needed to be done in co-ordination with autistics.
    He saw the lack of knowledge for what it was at the time… I am not sure what you are seeing from your view in 2008 looking back at the text books on shelves…Living it was different from the view I get from your post.

    “There was a considerable amount of knowledge about autism available in the United States in the mid to late 1990s with miles of shelves of books and studies on autism (as well as what was then published on the world wide web); but because your autism was not of the textbook type, I guess your psychiatrists/psychologists didn’t really know what was in your best interests. However any competent psychiatrist or psychologist would have been able to obtain an adequate knowledge of autism, at the very least.”

    This does not speak to an adolescent going through this loss with no role model…Do you truly understand how this feels? I must say that as a just barely this side of NT parent I had no
    history to show my daughter to help her get through the changes…She had to get this information from another autistic adult…This
    woman and I now “share’ a daughter…I just don’t think you get the seriousness of going through adolescence with no role model to follow and sensory perceptions being unpredictable as well
    as other catastrophic losses…Yes, there were text books about autism..but good grief…I remember reading in the San Jose Mercury News in the 90’s about this “new set of symptoms” people are labeling Aspbergers….There just was not a lot of information…People were more concerned with hyperactivity…and ADD.

    “It intrigues me that you “had no model for existing as a person like who I was”. You seem to me to be very much your own person to need any models. Where did you find the model you needed, or did you discover that you did not need a model?”

    This just reeks of judgment…I don’t think you are intrigued…You just don’t get how lost you would feel if as an adolescent you had no role model and you had even more changes going on then most adolescents….Imagine you are on Mars…
    and the only earth resident of your sex within miles..How do you feel about the changes you are going throug? Now become an autistic adolescent with losses going on in the teen age years…Overwhelming doesn’t even begin to cover it…

    “Another wheelchair analogy from the opposite viewpoint, would be if a wheelchair is taken from someone who can just about manage to walk without it, and they’re told they don’t really need it.”

    If you are claiming to know who needs a wheelchair and who does not from a distance…I think you should reconsider this thinking…Have you ever been so fatigued at a time in your life when others are full of energy and had to choose between never going out at all and having a wheelchair to go out a minimum amt? Have you ever struggled to do even the basic daily tasks? Have you had to cut your long hair because you did not have the energy to maintain it?

    Walk a mile in someone else’s shoes before passing judgement…

  12. Hi. I’m the mom of an eleven year old boy who has autism. “H” speaks and writes but doesn’t yet communicate well enough to really tell me his point of view on a lot of things. I know a lot of people out there have lived through what he is experiencing and in reading your posts I get a glimpse of where he may be in a few years. I so want to shield him from the sadistic helpers and avoid being one myself, although I fear I have already taken on that role at times. I just ran across this blog today and will probably be up reading it much of the night. Thank you for your insights. I know you can’t really provide me with a roadmap to get my son to a happy and independent adulthood, but any advice as to effective therapies, curriculum, or treatment approaches would be greatly appreciated.

  13. Wow, I feel like the last person on earth who has seen Amanda’s video. After seeing it this morning I have an entirely different perspective of autism. My eyes and mind are open to new possibilities and perspectives.

  14. Alternate analogies?: A person born with 3 legs?

    …Volkmar telling someone in a wheelchair to walk… only he doesn’t notice the person has 3 legs. Growing up, trying to learn to walk… pants with only 2 legs always interfering, no shoes for a non-left/non-right foot, no examples of how 3-legged people walk in life or movies, and maybe some misguided help on how to walk — by tying back one leg back — sych that maybe it gets weak, bent, painful — causing more “problems.”

    So, the person never works out a natural way to walk. That’s why they’re in a wheelchair, Dr. V. They need to learn how to walk in a natural way for them, not get told they’re defective.

  15. [pressed “submit” too soon]

    …And they might be better than average at driving a stick-shift. Or hopscotch. Or Can-Can dancing(?). (The Rockettes’ would only need two-thirds as many dancers… :-) ) Stomping grapes, Karate, wildeness survival (one broken not as much a problem)…

    All that & more is lost if the “cure” is to tie one leg back.

  16. I have a question which I haven’t seen addressed in your other posts. it’s about the anecdotal observations that some people who have been diagnosed with autism become markedly more verbal when they are riding horses (hippotherapy session, to be more precise). The literature hasn’t demonstrated any correlation or causality for this, and I am interested in gaining your perspective about it. It is theorized that the movement of the horse in some way stimulates cognition and verbal expression brain centers.

    Thanks for your consideration. I’d appreciate links to sources, if you have them, so I can do my homework instead of littering your blog .

  17. Amanda, reading your reply to my previous comment feels like standing in a storm, buffeted by wind and rain, behind a sea wall against which tempestuous waves are breaking. I know that is your communication style. As Mrs Whatsit didn’t say in ‘A Wrinkle in Time’: That is how she writes. Sometimes I think I would like to communicate by quotations like Mrs Who.

    I have written in my latest friends only post on my live journal about expressing my opinions. What I’m writing now is like going only an inch or two into my mind. If I want to say anymore at a deeper level, I’ll post a friends only entry in my live journal.

  18. Thank you. That’s a worryingly accurate picture of most of what I’ve seen in various institutions (with or without walls) ostensibly designed to ‘help’ people. And exactly why I specified blatant sadism: I see little way (or reason!) for the person on the receiving end to distinguish that sort of ‘help’ from concealed sadism.

    What I have noticed is that the sadists and the most hostile of the Smiley ones gravitate towards the back wards, the night shifts, and the most defenceless people, whereas the mostly-decent – who’ve nonetheless contrived to overlook the fact that running over someone’s foot where he stands, instead of knocking him over and then running boldly across some larger part of his body, is still violent – gravitate towards the ‘nice’ front wards. The result seems to be that few people who’ve only come into contact with the front wards have the slightest notion of how sadism and ‘helping’ are contiguous; whereas those who’ve been in back wards (only metaphorically, in my case, for which I’d be even more grateful than I am, if I didn’t suspect that my radar for blatant sadism was rather good, and know that my radar for injurious kindness was lousy) seem generally to understand it very well.

  19. Okay… let’s see:

    Mom: I think you really misinterpreted Philip’s comment. He is autistic, and his reply shows that even my response to him is pretty overwhelming to read. I published your response, because it said a lot of things that really did happen, but I do hope it won’t scare Philip off. He wasn’t passing judgment that I know of, but I know with a lot of scrutiny it’s easy to get sensitive. The wheelchair comment was a continuation of the analogy in the original post.

    Philip: I’m sorry about that. You’re right, I don’t know how else to write sometimes. I hope you’re still comfortable posting here at least some of the time.

    Annie: I don’t know a lot about the horse thing. I do know someone whose child used that sort of thing, but I have not been in contact with her for years. You might be interested in Songs of the Gorilla Nation which is a book by Dawn Prince-Hughes about how contact with gorillas helped her learn things about communication with humans. I talked to her during a book tour of hers and she said that a lot of autistic people had connections with animals that helped us connect to other people in certain ways. For me, it was cats.

    Baba Yaga: Don’t get me started on night nurses. Yeek. The creepiest and most elaborate of the sadistic doctors I knew, worked in a place I was sent to that was supposed to be the last stop for hopeless cases before permanently being put in state institutions (at least that is how they advertised themselves). He actually told me he enjoyed working with me because normally he didn’t see anyone like me because we were “taken away from him” into state institutions. He was frightening (my mom will remember him too, from a whole different but equally awful angle to the way I remember him).

    Makoto: I imagine also that the person would be considered rather obscene for not fitting into normal pants and therefore showing areas of the body normally considered private, too, so they would be seen as violating all kinds of social taboos just by existing. And if they were male, they’d still probably be forced into skirts or else special three-legged pants that were not comfortable nor fitted properly, and that impeded natural movement.

    Anyone else: If you have questions about stuff, I hope other regular posters here will jump in with comments, I’m not always good at broad questions, or answering tons of questions at once either.

  20. Philip,

    I do apologize as it sounds like I misinterpreted what you were meaning in your post…The wheelchair analogy went right over my head…I too hope you feel comfortable posting here.

  21. Baba Yaga wrote “What I have noticed is that the sadists and the most hostile of the Smiley ones gravitate towards the back wards, the night shifts, and the most defenceless people, whereas the mostly-decent – who’ve nonetheless contrived to overlook the fact that running over someone’s foot where he stands, instead of knocking him over and then running boldly across some larger part of his body, is still violent – gravitate towards the ‘nice’ front wards.”

    I don’t think this is always the case. I found that the ambitious career orientated nurses who were bothered about paperwork and didn’t talk to the patients, while pretending to be progressive, got promoted to the front wards with easy to deal with patients. But the more understanding nurses who treated patients humanely and got to know them as individuals, were sent to back wards, supposedly as a sort of punishment and moved off the career track. Night nurses vary, but they are also less career orientated, and some are assistants and work there for the money not their egos. Sometimes they do treat you like shit yes, but often they are as against the system as I was. They slagged off the management and bent the rules for my benefit. It could be quite a laugh.

    The place I was treated best was the State Hospital where the baddest and most unmanageable and many vulnerable patients were sent. The staff treated me pretty well, they adhered to the rules, and I wasn’t restrained or physically abused once in 15 months, yet that used to happen to me regularly on a “nice” ward in the local hospital.

    My worst experiences were in a Mind group home. Mind is a mental health charity that markets themselves as listening to patients, not being medical, they have charters of good practice – it all sounds good and is for patients who supposedly can manage quite well in the community ie not the vulnerable people you get in the State Hospital. But it was a nightmare, because they don’t actually stick to their policies, they lie, there was bullying of residents by other residens, they neglect patients who cannot cope well and call it patient autonomy ie one person (in a house of 5 people) died while I lived there and another lost so much weight, because she could not feed hersslf, that she collapsed and needed intensive care, but when I pointed out many times what was going on and tried to intervene, I was told that they had the right to live as they pleased and I was the one who needed psychiatric help.

    Unfortunately the State Hospital is to be closed down and replace with small secure units, while community-based charities like Mind are being given more funding.

  22. Amanda and Mrs Baggs,

    I fully accept your apologies. Thank you. I hope that doesn’t sound formal.

    I’ve been thinking about the Internet and the opportunity it provides for people to express their opinions. Until it became widespread, particularly in the last five years and with the proliferation of blogs, there was limited opportunity for ‘ordinary’ people, that is not politicians or journalists or acknowledged experts in a particular subject to comment in public forums. They could write letters to newspapers but only a few would have been published in one issue. I guess that there are more comments posted nowadays in reply to one article in a major newspaper such as the New York Times, than there would have been letters published in a month in that same newspaper twenty years ago. There were also phone-ins to radio and television programmes, but the number of callers who got on air was limited.

    If everyone (I know that is an exaggeration) can express their opinion in public, however ignorant and/or outrageous, then there is a danger that well thought out, carefully considered and knowledgeable opinions are devalued. It’s something like really trashy pictures by people who can’t paint being displayed in an art gallery with pictures by artists.

  23. you know, it made me somehow nostalgically sad reading this. mainly cause the sentence about dreams stuck in my head for like two days. it’s so strange, imagine having so many different people, and i bet a lot of them have this same thought. i can’t count the times i’ve tried imagining that this, in fact, IS the dream.. especially if i’d have just woken up from that “other life”.. which was always more valid and stronger, it seems, than this one. even just now, a few months ago, i used to go to sleep wishing i wouldn’t ever wake up again, so i could stay there. the worst was when i’d wake up the next morning WITHOUT anything to remember even.
    my boyfriend said.. seemingly, many people have this. he said even the aborigines had this hope, wish, thought when they were going through those really tough times. people are so different, yet they’re so similar sometimes, it seems, isn’t that strange.
    oh, by the way, even if you’re not gonna answer my messages (on youtube, i believe you might have not had time, you’re probably very busy), i still wanted to tell you here that i look up to you and stuff :) you’re really cool. even if that’s kind of a lame way to put it, heh.

  24. I almost never check my messages on YT because my mailbox gets too many of them. I’m more likely (but not guaranteed) to read and respond to stuff here.

    I’m not too surprised that trying to treat reality as a dream is not unusual. That’s what life starts seeming like anyway when things get too disturbing, I was just a little more obsessive about pursuing that line of thought for longer than most would.

  25. how the hell I haven’t come across you before godnose! I have no idea whether you’ll be even faintly interested but I’m developing my arguments (on my web site, forum, blog etc) for the introduction of Democracy. The real thing, that is, not the pathetic sham we live with and which most people have supinely fooled themselves into believing is already Democratic.

    One of the arguments I’m making is that we desperately need a new paradigm for conducting debate. The biggest problem, for example, with “Free Speech” as invented by the Athenians, is that it hands immediate victory to those with the gift of the gab. If you can wrap an audience around your little finger, you can persuade the crowd to follow you anywhere, like a bunch of obedient sheep. But such skills are only presentational. They don’t correlate with deep insight or intellectual analysis of our problems. This is why ten thousand years of “inspired leadership” has produced the mess and danger we’re in today. Being a good speaker, a crowd pleaser, clearly doesn’t indicate a wise man (or woman).

    I argue (scroll down to “The Real Problem With Democracy”), therefore, that we need to create a democratic forum, here on the web, in which anyone can contribute to the debate in the form they are most comfortable with.

    I could not have imagined a better personification of the case for such a forum than your good self. You are truly inspirational and I hope your case will help to change the world.

  26. yeah, well, i first sent them and only then realised that it probably won’t be of any good to me.. i read the article later and sort of rea;ised how many people must mail you or comment on stuff.. but back then i didn’t know where i else i could write you. i found this just a few days later :)
    if you care to find my messages in the vast fields of youtube mail :) you can find me under the username dansudansu. i believe at least one of my messages was important. anyhow, for you to decide.
    i still sometimes resort to the dream thing.. i was rather sad not being able to remember half of tonight’s dream.. it got lost when the alarm rang.. i died in that dream, yet it was much better than reality still.
    my dreams are sometimes so interesting i was thinking of making a dream blog and whatnot.. but most of the time i can’t remember enough to make it into a plot that others can follow.. mostly it’s more a feeling-plot than a happening-plot i guess.. do you ever write your dreams down anywhere..? i think there should be more dream blogs.. dreams are so interesting.
    sorry for flooding your post.

  27. Sorry if I’m restating what has already been said but Volkmar is missing the point. Which is surprising considering he presumably thinks of himself as superior and as fit to pass judgement on how autistics should conduct themselevs.
    The point is that people are entitled to assitive technology and support in order to be independent.
    Someone who cannot walk can achieve independence with a wheelchair. Someone who cannot speak (or who is part-time verbal, such as myself due to random episodes of involuntary mutism) can achieve independence by using a communication device and so on.

    And someone wrote a ridiculously childish comment on the Wired article saying that how can someone be intelligent or not defective if they can’t shower themselves. For goodness’ sake! The measure of how worthwhile a person is cannot be measured by their ability to shower.

    To give a basic example. Saddam Hussein could probably shower himself – but he was not someone who made a positive contribution to society in any way.

    Stephen Hawking cannot shower himself unaided – but he is a good person and is stunningly intelligent and has made huge contributions to the world of science.

    So, like I said, a basic example, but you get the idea!

  28. “the last stop for hopeless cases…” terrifying in its own right. even without a sadist to point out to you the next stop. 8-(

    Makoto – I like the three-legged analogy.

    tinted – yes, the best (and least staffy) staff do seem often to get driven out, relegated to the unpopular jobs, & so on. I’ve known more than one who was dismissed on a trumped-up charge, or so hindered that he ended up resigning for health reasons. I think anyone who really challenges an established system, and the interests it embodies, is susceptible to that treatment.

    those aren’t really who I’m thinking of. I’m thinking more of the more-or-less decent who see – but who simultaneously don’t see when it really matters. or who react institutionally, even though they reflect (but chiefly in the abstract) humanly. and yes, that does include those who take refuge in paperwork, and Enlightened policies. (policies are less messythan people.)

    you’re also right that an interesting thing seems to happen, in the not-so-shiny wards, somewhere in between the front wards, where people are expected to Get Better, and any sign of not doing so tends to be punished, and what I think of as the real back wards, which tend to be like storage bins for people considered sub-human, mostly unable to complain or to be believed, and where it’s very easy for blatant sadists to flourish.

    in the not-so-shiny wards, there tends to be much less intensity of normative pressure, fewer outsiders to whom Therapeutic Intent has to be displayed, and a lower turnover of patients than on the front wards, and staff and patients do seem to mix socially far more equally than anywhere else, such that the vagaries of both sides become fairly indistinguishable. also, when time does come to restore the power balance (which it seems periodically to do), or when someone’s punished for breaking the rules, it’s both fairly visible (which I can handle, whereas it took me years to spot the disguised, Therapeutic kind), and mostly more token than deliberately vicious. I wonder, though, whether that’s still as true since smoking bans?

    as for MIND, not my favourite body.

  29. ballastecistenz, Misquotes, misunderstood analogies, mis-placed info etc are to be expected in articles. However, I was enlightened and brought to your website by the article in Wired.
    I love your website. I find inspiring. I love your favorite quotes. I am not autistic but, had different ideas about it until I read the article and looked at your site. Oh, by the way, my hubby is proud of being a “computer nerd.” It pays for our home, clothes, cars, etc. But, nothing makes it home like love and going after a dream which you are doing.

  30. I think, from what I’ve heard, the Australian Aborigines traditionally treated dreams as more real than reality. I could be mistaken or misunderstanding something, however.

  31. Dreamtime is part of the Aboriginal creation story and of course it’s a cultural thing as well. Here’s a decent summary but there’s more information out there if you’re interested.

    I personally keep a dream log. My recall has been a bit lousy lately, though. Last night, however, I remember dreaming about Amanda. We were riding the bus somewhere and talking. I don’t remember much of what was said mainly because at some point, I realized, well, she wasn’t using any communication devices. When I said something about it, she told me she was using telepathy. *blinks* Well, my dreams sure are strange but since it was a dream, well, I shrugged and we went on talking. :P

  32. Is there only one Aboriginal belief system though, and only one creation story? Because Australia’s a big continent, and I know that here in North America, non-Indian people often think of American Indians as having only one culture, and one belief system, when actually it’s as diverse as Europe or any other continent, and there are few to no universal beliefs or customs.

    I actually don’t think about my dreams as much anymore. Probably because I got so intensely involved in them before that they became more important to me than the real world. And I think that was a mistake on my part.

    I used to be able to do things like control them to a pretty fine degree of detail, open my eyes but stay asleep, continue them where I left off if I woke up and went back to sleep, etc. Right now about the only part of that I retain is the ability to wake myself up if necessary during nightmares.

    I noticed that on the combination of medications I was on before (before the Trileptal started messing with my liver), I actually slept more soundly. And I had less control over my dreams, which were so realistic they felt exactly like reality. They often had elaborate plots, too, although they were mostly like bad sci-fi novels or something. Really bad ones, the kind that almost never get published and if they do they go out of print fast. When I woke up I was often disoriented because I’d taken the dreams for real.

    And I’m a pretty light sleeper if I’m not on certain meds. Amitriptyline seems to really help with that. (Wow, an actual use for an anti-depressant. That’s stunning in itself.) The problem is part of the reason I was a light sleeper was physical problems I was having in my sleep, so now instead of waking up choking on reflux I’m choking on it and even spitting it up in my sleep without waking. (I taped myself to see if it was still going on without my knowledge. It was.)

    I also noticed that when I moved from California to Vermont I quit having nightmares every night. I guess so much bad had happened to me in and near California that the place itself was too much of a reminder for me. Being away from there was really good for me, I went from being constantly bothered by PTSD-type stuff to comparatively little of it.

    So… I guess I find dreams interesting, but not too interesting anymore. I don’t want to value them over the real world again, so I guess I’m more conservative about that than a lot of people would have to be.

  33. Eh, I’m no expert on that particular culture. I just remember a few concepts and specific myths. Google turns up mostly New Agey stuff before any real results, which is always annoying. :P I like studying that sort of thing, but I’ve been in other parts of the world lately as far as research goes due to stuff I’m writing…

    Anyway, I’d hardly say I’m obsessive about my dreams. I mainly record them when I can so I can write something on a fairly routine basis. I wasn’t too good at keeping a “normal” sort of journal for a while, so I went with something else.

  34. Amanda,
    I find you intriguing and am convinced that you are brilliant. I am an elementary school teacher of students with special needs and would like some insight on teaching students with autism. Is there a particular method you would have liked a teacher to use?

  35. On the wheelchair analogy.

    If you take a wheelchair away from someone who can just barely walk without it, the most likely outcome is that their life will become more restricted, exhausting, and painful. Forcing someone into a situation where they either have to use up massive efforts to get around, or be completely unable to get from place to place is more likely to wear them out than do any good.

  36. man, really? controlling dreams like that is crazy. my boyfriend seems to be able to do some of that naturally. but.. somehow even though.. as much as i like my dreams, learning how to control them would be a travesty. like, there was this one time i was having a great dream, in fact, the most wonderful dream i’ve ever had, and then i suddenly realised i’m in a dream :( that i can control it etc., blah blah. i was talking to my friend and suddenly i was saying ‘..but you’re not my friend, you’re just an illusion..’. i even saw myself from the ceiling O.o the way i was sleeping ( and everything fit reality – the bedsheets, my clothes, everything! that’s kind of creepy) so that was pretty crazy. but i chose the dream.. i willfully chose to go back to the dream believing IT is true life. because knowing it’s a dream is kidding yourself. i will not kid myself :p it makes it kind of sad. the point of having dreams is that you don’t know it’s not real in the first place, i think.

    and.. i don’t even know if i want to value dreams more than reality, but.. in dreams.. there’s this thing where.. sometimes my subconscious pulls out a couple of really interesting things. worlds that are so nostalgic and strange. like the world was when i was a kid (now it’s mostly lost :( ). my dreams usually don’t have a bad plot xD just a little sappy sometimes :p but the sappy stories seem heartbreaking in dreams. it’s really sad when you wake up and realise you can’t really tell about it to many people cause they’ll think it’s really stupid :p
    however, my dreams have interesting stuff in them.. usually very intricate stories. where the world is big and magical, i don’t know.. that’s what makes it great.
    to give a little bit of the feel of the world in my dreams, here’s a link. it’s this new artist i found like a few days ago and i’m totally crazy for her music right now. she’s the only Lithuanian artist (my country) i ever listen to.. i know the music’s weird, but it’s just so magical. too bad you won’t understand the words :p they’re half what makes it special. i tried translating them to my boyfriend, but translated they seem just plain lame :p you don’t translate poetry and get away with it..
    anyway, here’s the link. it’s a myspace page of the artist.. click on the player to choose a song. my recommendation: “lijo” or “menulyje”.
    http://www.myspace.com/alinaorlova

    okay, copying the link is NOT an excuse to listen to the song. before i know it i’ll get bored with them. it’s been three days, i’ve listened to them so many times i know the lyrics in and out already.

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