Monthly Archives: January 2007

We need to remove this access barrier before it gets put up. (Incandescent lighting ban in California.)

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My mother and a friend have both pointed this one out to me:

Light Bulb Moment in California: Should it Ban the Common Bulb?

How many legislators does it take to change a light bulb?

In California, the answer is a majority — plus Gov. Arnold Schwarzenegger.

Decrying the inefficiency of the common light bulb, a Democratic Assemblyman from Los Angeles wants California to become the first state to ban it — by 2012.

Assemblyman Lloyd Levine says compact fluorescent light bulbs, which often have a spiral shape and are being promoted by Wal-Mart, are so efficient that consumers should be forced to use them. The compact bulbs use a quarter the energy of a conventional light.

I no longer live in California. But anyone who does, please write your representatives about this. Fluorescent lighting (yeah, even often the new stuff) can result in total shutdown in autistic people, trigger migraines, and all kinds of other nasty things.

I took a sign language class under fluorescent lighting in California. It was a night class. My mother drove a brown minivan at the time. When I came out of the classroom, I was so confused that I tried to open the door of and get into a white station wagon that someone entirely unlike my mother was driving. I in fact tried repeatedly and did not notice until someone pointed out that this was not my mother’s car. Moreover, I could not see the signs people were doing, and I could not coordinate my hands to sign. I got confused, disoriented, and nearly immobile.

These days, if I spend too long under fluorescent lights, as a bonus I also get a really nasty migraine along with plenty of vomiting and such. A friend of mine used to get seizures from them (she was not naturally epileptic but was on a medication that lowered the seizure threshold). (I even have a letter from my doctor insisting on incandescent lighting, on my official documents page.)

LED-based lights, by the way, are energy-efficient and non-fluorescent, but nobody seems to be talking much about those, only about the evil fluorescents.

This is an accessibility issue for many disabled Californians, and needs to be framed as one somehow. I wish I had contacts in the Californian disability community, I wish there was more I could do about this, does anyone know anything in that regard? Are any disabled Californians and their allies organized around this? Because someone needs to be, and I’m too far away to do anything but point it out on a blog on the Internet.

What does “Kanner” actually mean, historically?

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I was watching the recent autism episode of The View, and noticed that early on an “expert” repeated the current common usage of the word “Kanner” in relation to autism.

Within this umbrella, you have different severities of autism. You have the more severe strict autism that Dr. Leo Kanner described in 1943, where you have the very non-verbal non-functional individual sitting in the corner banging their head, and then you’ve got milder forms. You’ve got the atypical autism, or the PDD-NOS like you have in your child, they have milder symptoms, they may have a little language, but they may not be as age-appropriate. They have some social interaction issues, but it may not be, again, socially and developmentally appropriate. And then they have some odd behaviors, some repetitive or stereotypic behaviors.

I’m coming to the conclusion that most “experts” on autism have not actually read Leo Kanner’s 1943 paper very thoroughly, and do not know the history that goes along with it. Here are some quotes that show that absolutely none of Kanner’s original patients fit the stereotype she describes on that show:

Autistic Disturbances of Affective Contact (PDF).
Autistic Disturbances of Affective Contact (HTML).

About Donald T:

At the age of 1 year “he could hum and sing many tunes accurately”. Before he was 2 years old, he had “an unusual memory for faces and names, knew the names of a great number of houses” in his home town. “He was encouraged by the family in learning and reciting short poems, and even learned the Twenty-Third Psalm and twenty-five questions and answers of the Presbyterian Catechism.” The parents observed that “he was not learning to ask questions or to answer questions unless they pertained to rhymes or things of this nature, and often then he would ask no question except in single words.” His enunciation was clear. He became interested in pictures and very soon knew an inordinate number of the pictures in a set of Compton’s Encyclopedia.” He knew the pictures of the presidents “and knew most of the pictures of his ancestors and kinfolks on both sides of the house.” He quickly learned the whole alphabet “backward as well as forward” and to count to 100. [Describing a few years later:] He quickly began to read fluently and to play simple tunes on the piano. [...] He expressed puzzlement about the inconsistencies of spelling: “bite” should be spelled “bight” to correspond to the spelling of “light”. He could spend hours writing on the blackboard. [...] He got hold of an encyclopedia and learned about fifteen words in the index and kept repeating them over and over again. [...] Another of his recent hobbies is with old issues of Time Magazine. He found a copy of the first issue of March 3, 1923, and has attempted to make a list of the dates of publication of each issue since that time. So far he has gotten to April, 1934. He has figured out the number of issues in a volume and similar nonsense.

About Frederick W:

He has said at least two words ["Daddy" and "Dora," the mother's first name] before he was 2 years old. From then on between 2 and 3 years, he would say words that seemed to come as a surprise to himself. He’d say them once and never repeat them. One of first words he said was “overalls,” [The parents never expected him to answer any of their questions, were once surprised when he did give an answer-"Yes".] At About 21/2 years, he began to sing. He sang about twenty or thirty songs, including a little French lullaby. In his fourth year, I tried to make him ask for things before he’d get them. He was stronger-willed than I was and held out longer, and he would not get it but he never in about it. Now he can count up to into the hundreds and can read numbers, but he is not interested in numbers as they apply to objects. He has great difficulty in learning the proper use of personal pronouns. When receiving a gift, he would say of himself: “You say ‘Thank you.’”

He bowls, and when he sees the pins go down, he’ll jump up and down in great glee.

About Paul G.:

At 3 years, he knew the words of not less than thirty-seven songs and various and sundry nursery rhymes. [...] Upon entering the room, he instantly went after the objects and used them correctly. He was not destructive and treated the objects with care and even affection. He picked up a pencil and scribbled on paper that he found on the table. He opened a box, took out a toy telephone, singing again and again “He wants the telephone,” and went around the room with the mouthpiece and receiver in the proper position. He got hold of a pair of scissors and patiently and skillfully cut a sheet of paper into small bits, singing the phrase, “Cutting paper,” many times. He helped himself to a toy engine, ran around the room holding it up high and singing, “The engine is flying.” [...] His enunciation was clear, and he had a good vocabulary. His sentence construction was satisfactory, with one significant exception. He never used the pronoun of the first person, nor did he refer to himself as Paul. [...] Formal testing could not be carried out, but he certainly could not be regarded as feebleminded in the ordinary sense. After hearing his boarding mother say grace three times, he retained it without a flaw and has retained it since then. He could count and name colors. He learned quickly how to identify his favorite Victrola records from a large stack and knew how to mount and play them.

About Barbara K:

Ordinary vocabulary at 2 years, but always slow at putting words into sentences. Phenomenal ability to spell, read, and a good writer, but still has difficulty with verbal expression. Written language has helped the verbal. [...] In camp last summer she was well liked, learned to swim, is graceful in water (had always appeared awkward in her motility before), overcame fear of ponies, played best with children 5 years of age. [...] Attracted by a pen on the desk stand, she said “Pen like yours at home.” Then, seeing a pencil, she inquired: “May I take this home?” [...] She read excellently, finishing the 10-year Binet fire story in thirty-three seconds and with no errors, but was unable to reproduce from memory anything she had read. In the Binet pictures, she saw (or at least reported) no action or relatedness between the single items, which she had no difficulty enumerating. Her handwriting was legible. [...] She knew the days of the week.

Of Virginia S:

She is neat and tidy, and does not play with other children, and does not seem to be deaf from the gross tests, but does not talk. The child will amuse herself by the hour putting picture puzzles together, sticking to them until they are done. I have seen her with a box filled with the parts of two puzzles gradually work out the pieces for each. [...] She pays no attention to what is said to her but quickly comprehends what is expected. Her performance reflects discrimination, care, and precision. With the nonlanguage items of the Binet and Merrill-Palmer tests, she achieved an IQ of 94. “Without a doubt,” commented the psychologist, “Her intelligence is superior to this. [...] she finds pleasure in dealing with things, about which she shows imagination and initiative. [...] She remembered (after more than a year) where the toys were kept and helped herself. [...] Quick, skilled moves. Trial and error plus insight. Very few futile moves. Immediate retesting reduced the time and error by more than half. [...] In December I heard her hum the perfect tune of a Christmas hymn while she was pasting paper chains.

About Dorothy, the sister of Herbert B (not diagnosed as autistic but described as in early life ignoring most people, dancing in circles, making queer noises with her mouth, and reversing pronouns):

She was first declared to be feebleminded, then schizophrenic, but after the parents separated (the children remaining with their mother) she “blossomed out”. She now attends school, where she makes good progress; she talks well, has an IQ of 108, and — though sensitive and moderately apprehensive — is interested in people and gets along reasonably well with them.

About Herbert B himself:

Within certain limits, he displayed astounding purposefulness in the pursuit of self-selected goals. Among a group of blocks, he instantly recognized those that were glued to a board and those that were detachable. He could build a tower of blocks as skillfully and as high as any child his age or even older. [...] He went after the Seguin form board and instantly busied himself putting the figures into their proper spaces and taking them out again adroitly and quickly. [...] When one figure was stealthily removed, he immediately noticed its absence, became disturbed, but promptly forgot all about it when it was put back.

About Alfred L.:

He has gradually shown a marked tendency toward developing one special interest which will completely dominate his day’s activities. He talks of little else while the interest exists, he frets when he is not able to indulge in it (by seeing it, coming in contact with it, drawing pictures of it), and it is difficult to get his attention because of his preoccupation…. there has also been the problem of an overattachment to the world of objects and failure to develop the usual amount of social awareness. [...] Since he talked, there has been a tendency to repeat over and over word or statement. He almost never says a sentence without repeating it. Yesterday, when looking at a picture, he said many times, “Some cows standing in the water.” We counted fifty repetitions, then he stopped after several more and then began over and over. [...] Alfred, upon entering the office, paid no attention to the examiner. He immediately spotted a train in the toy cabinet, took it out, and connected and disconnected the cars in a slow, monotonous manner. He kept saying many times, “More train- more train- more train.” He repeatedly “counted” the car windows: “One, two windows-one, two windows-one, two windows-four window, eight window, eight windows.” He could not in any way be distracted from the trains. A Binet test was attempted in a room in which there were no trains. It was possible with much difficulty to pierce form time to time through his preoccupations. He finally complied in most instances in a manner that clearly indicated that he wanted to get through with the particular intrusion; this was repeated with each individual item of the task. In the end he achieved an IQ of 140. [...] Alfred was extremely tense during the entire interview, and very serious-minded, to such an extent that had it not been for his juvenile voice, he might have given the impression of a worried and preoccupied little old man. At the same time, he was very restless and showed considerable pressure of talk, which had nothing personal in it but consisted of obsessive questions about windows, shades, dark rooms, especially the X-ray room. He never smiled. No change of topic could get him away from the topic of light and darkness. But in between he answered the examiner’s questions, which often had to be repeated several times, and to which he sometimes responded as the result of a bargain -”You answer my question, and I’ll answer yours.” He was painstakingly specific in his definitions. A balloon “is made out of lined rubber and has air in it and some have gas and sometimes they go up in the air and sometimes they can hold up and when they got a hole in it they’ll bust up; if people squeeze they’ll bust. Isn’t right?” A tiger “is a thing, animal, striped, like a cat, can scratch, eats people up, wild, lives in the jungle sometimes and in the forests, mostly in the jungle. Isn’t right?” [...] He once stopped and asked, very much perplexed, why there was “The Johns Hopkins Hospital” printed on the history sheets: “Why do they have to say it?” This, to him, was a real problem of major importance, calling for a great deal of thought and discussion. Since the histories were taken at the hospital, why should it be necessary to have the name on every sheet, though the person writing on it knew where was writing? The examiner, whom he remembered very well from his visit six years previously, was to him nothing more nor less than a person who expected to answer his obsessive questions about darkness and light.

Charles N:

He will break a purple crayon into two parts and say, “You had a beautiful purple crayon and now it’s two pieces. Look what you did.” … He is proud of wetting, jumps up and down with ecstasy, says, “Look at the big puddle he made” [...] Without looking at anyone, he said, “Give me a pencil!” and took a piece of paper from the desk and wrote something resembling a figure 2 ( a large desk calendar prominently displayed a figure 2; the day was February 2). He had brought with him a copy o Readers Digest and was fascinated by a picture of a baby. He said, “Look at the funny baby,” innumerable times, occasionally adding, “Is he not funny? Is he not sweet?” When the book was taken away from him, he struggled with the hand that held it, without looking at the person who had taken the book. When he was with a pin, he said, “What’s this?” and answered his own question: “It is a needle.” [...] When confronted with the Seguin form board, he was mainly interested in the names of the forms, before putting them into their appropriate holes. He often spun the forms around, jumping up and down excitedly while they were in motion. the whole performance was very repetitious. He never used language as a means of communicating with people. He remembered names, such as “octagon,” “diamond,” “oblong block,” but nevertheless kept asking, “What is this?”

About John F:

At 5 1/2 years, he had good mastery of the use of pronouns. He had begun to feed himself satisfactorily. He saw a group photograph in the office and asked his father, “When are they coming out of the picture and coming in here:”
He was very serious about this. His father said somethig about the pictures they have at home on the wall. This disturbed John somewhat. he corrected his father: “We have them near the wall” ( “on” apparently meaning to him “above” or “on top”).
When he saw a penny, he said, “Penny. That’s where you play tenpins.”He had been given pennies when he knocked over tenpins while playing with his father at home. He saw a dictionary and said to his father, “That’s where you left the money?”
Once his father had left some money in a dictionary and asked John to tell his mother about it. His father whistled a tune and John and correctly identified it as “Mendelssohn’s violin concerto.”

Elaine C:

When she began to speak at about 5 years, she started out with complete though simple sentences that were “mechanical phrases” not related to the situation of the moment or related to it in a peculiar metaphorical way. She had an excellent vocabulary, knew especially the names and “classifications” of animals. She did not use pronouns correctly, but used plurals and tenses well. She “could not use negatives but recognized their meaning when others used them.” [...] She speaks well on almost any subject, though with something of an odd intonation. Her conversation is still rambling talk, frequently with an amusing point, and it is only occasional, deliberate, and announced. She reads very well, but she reads fast, jumbling words, not pronouncing clearly, and not making proper emphases. Her range of information is really quite wide, and her memory almost infallible.

As you can see, none of Kanner’s subjects fit the stereotype the “expert” was describing. So why is it that people invoke the name of Leo Kanner to describe people who fit a certain stereotype (an “LFA” stereotype)? It’s interesting. Last fall, I speed-read a number of books on autism, from different time periods, that describe it in different ways. (When I read in that manner, I don’t understand what I read until later.) In one of the books (I wish I could remember which), they are very explicit about their usage of the term Kanner autism. They used it very similarly to the way people today would say “high functioning”. They then described an newer category of “autistic PDD” that was making its way into the concept of diagnosing autism, and that included more “lower functioning” or “severely affected” people than Kanner had talked about.

So invoking the name of Kanner used to mean high-functioning, and now is used to mean low-functioning. (High-functioning and low-functioning by the way are stereotypes, and not things I believe in as realities, because human beings’ abilities are more complex with that.) I wish more people who throw that word around would learn what it means and what it doesn’t mean and who particularly Kanner studied, and who they were and were not. Because all this stuff about “not talking at all, not interacting at all, sitting in a corner rocking and head-banging, unaware of anything, etc” is not what his study of these children actually describes — even with his own biases and such all in there. It’d be nice if people actually read this stuff. By the standards of that particular “expert” on that show, most of Kanner’s patients would probably now be diagnosed with PDD-NOS or possibly even Asperger’s, because none of them fit the stereotype she described.

“Relating to objects” doesn’t have to mean “robotic”.

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I was rereading a book called Women from Another Planet, which is written by several autistic women, many of whom I know and like online. There’s a part of it that seems to relate to my experience of considering human relationships not the only relationships, and human communication not the only communication:

A perhaps startling suggestion, is that we may even have learnt empathy and other moral attributes, through our early relationships with the nonhuman world, despite a common NT assumption that fascination with the nonhuman risks making us more robotic. For example:

MM: We are always sewing souls into the things we create.

Jane: Yes. I think soul (essence of being) is created through creation of a relationship. I call it a moral relationship (which I know sounds prissy or sanctimonious to some), by which I mean a relationship where there is acceptance/acknowledgement of agency and responsibility. When I relate to an object (whether it is another human or a bear I have created out of cloth), with my moral (aware) consciousness, when I acknowledge my power to affect (recognize, hurt, heal, shine like the sun or nourish like rain — even to destroy like lightning), I also give power to the other (the object) to affect me. So that other is as alive as I am (in this sense). We are in a moral relationship that gives life meaning. That is why I know the bears who are my most intimate and daily family do help me be/have whatever is good in who I am and what I do. It is the relationship that makes us who we are (that makes me who I am). And I say that even though I have a strong tendency to want to say/feel, I am I, alone. That fraction of the truth lives inside the larger truth of relationships.

MM: Most of humanity is ignorant for not hearing and seeing what is around them. I hear the rocks and trees. Wish me well and tell me I am one of them, one of the silent ones who has now been given a voice, and that I must come out of hiding to protect others without voices: in my case I tend to give voice to people with Alzheimer’s disease. My washer and dryer speak to me, and so I painted a face on them and gave them names and make sure I don’t over work them. When I worked in a copy shop I could produce more copies than any other employee. Yes, I could understand the physics of the machine and their limitations from overheating etc. But for me the machines were talking to me and I talked back regularly.

I was raised by our Siamese cat I could understand her language better than the human language, and so I spoke Siamese way before I spoke English, and I thought the cat was my real mother because I could understand her more than I could understand humans. I speak to children, babies, machines, rocks and trees as if they can hear me and they know what I am talking about. That is why my success with Alzheimer’s patients is so high: I treat them with such great respect and assume they know what I am saying. And I wonder why the rest of the world is so ignorant as to treat others as stupid and dumb and things and animals so terribly because they are somehow less than us? Well I think that is a very arrogant stance to think we are better or more alive than these others who very much have a soul.

Jane and Mary Margaret have two of my favorite personal webpages by autistic people (although I’m biased because I like them personally as well): M. Jane Meyerding Home Page and Little Girl in Red.

When I first moved out on my own, I was pretty isolated, and never seemed to fit in the social world at all. (This was in many ways the least of my problems at the time, given that I was also near starving and dealing with filthy living conditions I couldn’t seem to do anything about.) Even at the hippie garden across the street where I got free meals on Thursdays, I basically just sat there and everyone talked around me. Which I was actually somewhat glad about because everyone there was so touchy-feely it was unnerving — one guy even jumped up right across from me spreading his arms and said (to the room in general) “You can never have too much touch, you can never have too much love,” and I mostly strongly hoped he wasn’t going to hug me. But it still pointed to being pretty isolated socially.

The driveway to the house I lived in an attachment to, was full of rocks. After dealing with Internet people or the hippie garden or other places that considered people most of the world, I’d go out there and I’d line the rocks up, stack them in piles or towers on my pants, and hold them in my hands. And suddenly it would become very clear I did have a place in the world, and that human society was only a small part of the determination of what that place was or what value it had. The rocks reminded me that humans were arrogant in thinking they were the entire world, and in trying to convince me that they were the whole world and determined my place and worth.

They also let me know that something made sense. Hunger, thirst, and sleep deprivation made my sensory experiences fragment even more than they usually did (I think they even do this to people whose neurology is more or less typical). But the sensation of a rock in my hand somehow never swirled into the sensory chaos that everything else did, and the existence of rocks assured me that everything else still existed too, even if I couldn’t tell what a whole lot of it was. So they let me know also that there was more to the world than all this chaos I couldn’t understand.

So I wrote this song about them:

The rock in my hand tells me
That there is a world out here in this swirl
The rock in my hand tells me
That things will not disappear

The rock in my hand tells me
That there is a world out here in this swirl
The rock in my hand tells me
That things will not disappear

The rock in my hand sings an avalanche song
To the rocks in the ground all around
It sings fearful power and boldest delight
And of death and of sand and of love

The rock in my hand tells me
That there is a world out here in this swirl
The rock in my hand tells me
That things will not disappear

The rock in my hand tells me
That there is a world out here in this swirl
The rock in my hand tells me
That the world has a place I belong

This stuff isn’t just about autism.

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Another response I saw to the video I did was from a person with brain damage. They said that the part I said about learning other people’s language was very true — that in rehab, for instance, therapists would say “Use your words or people won’t care what you’re thinking,” etc. (And here I thought “use your words” was an obnoxiousness reserved for special ed.) In fact they were so stunned by the reality of the thing, from when they were newly injured, that it took them a long time to even formulate a response.

I write about stuff from the perspective of an autistic person, because that’s part of what I am (I’m also a lot of other things, including probably brain damaged). But when I write about the experience of not being a “person” until I learn a foreign language, I’m not writing to give insight into autism specifically. I’m writing because that’s true even in accepted languages, that people are more “people” when they speak the dominant language, or the dominant dialect. I’m writing because that’s true of people with brain damage, people with Alzheimer’s, people with intellectual disabilities, people whose bodies don’t let them form speech easily even if their cognition is totally standard, people considered crazy (in all the various ultra-sophisticated medicalizations of that basic concept), etc, and I see it all the time.

A lot of the time I think I get pigeonholed as doing “autism writing” because that’s the specific circumstance I write about, but I’m almost always writing about something broader than that, some set of circumstances that applies to a wide variety of people. The point of what I wrote was not my own struggle (whatever people imagine that struggle to be) to communicate with people, but the bias behind what is considered communication.

A bias so strong that someone I used to know who was training to be a speech pathologist marveled at the fact that she received no actual training on augmentative communication techniques in school — that training was optional, and out of her own pocket, because speech was worshipped so highly. And that I have known a number of people whose communication goes totally ignored — even their very clear verbal communication at times — because it doesn’t fit a preconceived idea of what communication is. And then people routinely judge the personhood of any given person in question, based on what that person is and is not said to be able to communicate, which is another giant leap of assumption.

These are assumptions which leave people lonely, isolated, and trapped, at best — not by some internal condition but by what others do and don’t do based on those assumptions. At worst, they’re used to justify things like torture and murder, or at least to make them seem less heinous. Some people have asked exactly what I was referring to in that regard.

From the Miami Herald:

Circuit Judge Clayton Simmons made the ruling at a pretrial hearing Thursday in the case against Kathleen Garrett. Trial is expected to begin next week against the 26-year veteran of Seminole County public schools charged with physically abusing the students, who ranged in age from 12 to 15.

Garrett was arrested in November 2004 on charges that she abused autistic students in her class at South Seminole Middle School in Casselberry, even chipping one boy’s teeth by slamming his face into a desk.

Other allegations include beating children, humiliating them, pushing one’s face into vomit and disciplining some behind closed bathroom doors, where screaming and sounds of furniture banging around could be heard.

Defense attorney Thomas Egan argued that it is vital for jurors to see the kind of students Garrett supervised.

“One of these kids actually eats his feces,” Egan said. “I think the world will see volumes when they see these children.”

In this case, the fact that a kid eats his own feces is supposed to somehow justify the abuse that happened to him and the other students. Less of a person. (Many newspaper stories about autism, even ones that don’t stress what some autistic people do to feces, still stress our connection to it, which I am beginning to believe has something to do with people’s attitude about what they think we are, not just what we do.)

Things like that go on in nursing homes all the time, too, but older people are considered even less people than autistic people are (especially when the autistic people in question are, as often stereotyped, children), at times, so even fewer people hear about that kind of thing unless they have the misfortune to live in one of those places.

If you want more systematic and conventional torture of children considered to have a wide variety of labels, look no further than the Judge Rotenberg Center. (Or the guy who used to whack me on the knee harder and harder until I looked at him. He later justified his behavior by saying that he was saving me from a life of institutionalization.)

When I talk about people dying, I’m serious as well. My friend Joel has amassed quite a bit of information on the murder of autistic people, and we’re far from the only ones targeted (or seen as less worthy of saving) once we reach non-person status. Read When I Woke Up by Rus Cooper-Dowda for an account of a near-miss in that situation. Tracy Latimer‘s father gassed her to death and tried to justify it because she had severe cerebral palsy, after which such murders actually increased.

But even those who are not being tortured or dying, are still usually subject to a large amount of day-to-day degradation and denial of their existence as people (not even as “good people”, but as people at all). If all I had to write about were some sort of extremely stereotyped story of autistic people “overcoming the odds,” I doubt I’d write much at all.

For “Have Coffee Will Write”

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http://www.livevideo.com/flvplayer/embed/E80AFAECCFCE4B97B9D23B10E2C0DC7A
http://www.livevideo.com

This is for “Have Coffee Will Write” and others who have questioned whether I wrote my video. But please see my last few posts and the stuff they link to if you’re inclined to view this as utterly amazing or something. And also please don’t dismiss FC out of hand just because I don’t usually use it (only usually when exhausted or overloaded enough that I really need help either finding my arm or keeping it from jamming itself downward too much to type), it has a legitimate role in communication for a lot of people.

(For anyone wondering, this is the fastest rate I type, not the only rate — or way — I type.)

[Edited to add: I don't have other people around when I make videos, so I can't be handling the camera and typing at the same time. Normally I set the camera -- which is a tiny digital camera -- on an object, and then do the video. I with rare exceptions don't like making videos in front of staff. And when I'm trying to write something really fast it's not going to come out the same as it does when I write in long paragraphs for a blog; most people's casual speech does not resemble their formal writing.]

Self-consciousness, and meaningfulness, and meaninglessness.

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I talked once before about how self-conscious I get, before and after I give talks. I don’t give a lot of talks, but when I do, I’m well aware of people’s responses to the way I look. When I gave my talk on the panel at AutCom last year, for instance, it was near the end of the conference, I had a bad headache, and I couldn’t stop running everywhere and bashing into walls and then lying on the floor and such. I kept thinking, simultaneously, “Do people realize this isn’t voluntary, and that if I tried to stop something worse would happen?” and “Will people think I didn’t actually write this?”

Cheryl Marie Wade writes, regarding her participation in disability theater:

Going from being a person who used to hide her hands with a shawl, which I did, truly in life, for years–would always carry a shawl or a big purse that I could slide my hands under so that people wouldn’t be uncomfortable and I would not feel humiliated by people staring at my hands instead of making eye contact with me, and just the self-consciousness I had about it–to being someone whose anthem was, “Mine are the hands of your bad dreams, booga, booga,” and using my hands as, sort of, the red badge of courage kind of stuff–of just being so sassy, and so out there, and so in your face that you can’t deny me. [...] The more I played the “woman with juice” who was okay about her body, the more I truly became her in life. No matter how political I was, I wasn’t okay about my body.

I’ve spent a lot of my life being told by various authority figures not to do the things I do in my videos. For a time I was able to confine at least some of them to behind closed doors — in school bathrooms, for example, which I spent more time in than most kids — but then with the various demands and changes of puberty I was not. People already thought I was weird, but by then they thought I was even weirder, and I heard that these things were some combination of “retarded,” “psychotic,” “attention-seeking,” and “on drugs” (that last assumption being one that led to my brief period of actual drug use), and at any rate definitely ugly and shameful and pointless. Not to mention the endless litany of “Can’t you see people are staring?” (actually, I can’t), and the physical abuse that has ensued over this stuff.

Even the times when I was fairly still weren’t much help. I still remember being on a field trip and sitting on a set of bleachers staring into a light and not moving. Pretty soon everyone was around me waving their hands in my face and noticing that my pupils weren’t reacting to the light and so on and so forth. When I could move again, I could only move very slowly for awhile. (I was not taught about shutdown, nor the effects of unfamiliar locations on autistic people. I had no idea why this was happening.) When I’m still, I’m apparently too still.

But at any rate, while I apparently appeared not to care what people thought of me (and got a lot of compliments for “not caring what people think,” which seemed to hinge on the idea that if I didn’t want to look like this, surely I wouldn’t), I was actually getting more and more self-conscious about my appearance the more people said things (positive or negative) about it. And that’s never entirely gone away. I’m pretty introverted, and don’t generally like standing out, whether in a good or bad sense. (Which is one reason I liked AutCom. I didn’t stand out there whatsoever, I was neither the most normal-looking nor the most unusual-looking person there.)

Some of what has been considered attention-seeking behavior has been more like attention-avoiding behavior. Many of the times I have tried to disappear, I’ve inadvertently done something bizarre-looking to most people. I can remember hiding in closets and being accused of trying to make people find me, and running away from people only to be accused of trying to make people chase after me. And sometimes I, like the monster in Douglas Adams books, convinced myself that if I could absorb myself in something and forget everyone else, they wouldn’t see me. That didn’t work well either. At any rate, I often find attention, whether positive or negative, complimentary or neutral or attacking, aversive in large quantities. (I don’t mind some attention from friends, but the way I seek their attention is to write to them or something.)

So because of all this, I kind of freaked out this morning when I saw that the “In My Language” video I’d made had reached 24,000 views. This is sort of like how I feel after speeches, except it’s going on all the time.

I know this is a very silly reaction in someone who actually made and put the video out there to begin with. But I like the communication part of it. I like having a message and finding an artistic way to put it together. I like the effect that message has on people. I’m just not so sure I like the little part of that that involves people seeing how I look.

The problem is I generally think, “Okay, I have a message, I have a way to put it together, it’s probably a useful message for at least some people to hear, and advocacy is what I do. So if I’m scared to put it out there, tough. It’d be selfish to come up with a useful advocacy message and then not use it because I’m afraid of something totally inconsequential.” Some people enjoy being looked at so much that they get in danger of letting it cloud their message. I think I’m the opposite. I fear being looked at so much that it could cloud my message if I let it. So I’m very stern with myself about that, and I’m sure most of the time I look like I don’t care.

But I do care, I just try to avoid the self-indulgence of letting that run my life.

Sometimes I think though that even the people who like what I write, make too much of my appearance, as if it in itself is a communication of something other than what it is. I look like I look because this is how I look. Yes, my responses to my environment are a lot more meaningful than people give me credit for. But at the same time, this is just what I look like. This is what I have to look like. I don’t get a choice, unless I were to go back onto the brain-destroying neuroleptic drugs that did admittedly make me move around less (but did nothing to stop the reasons I needed to move around, and which may have contributed to some of the level of unusualness of my appearance).

The way I look is not a statement of severity of anything in particular, and it’s not a claim to any other traits besides my appearance. It’s not amazing that I look like this and also write. I know people who look like this and also speak. I have known many people who look far more standard than I do, until you try to talk to them, at which point they have no spoken or typed communication. I have known many people who look far more non-standard than I do, and hold down jobs, have families, take care of themselves reasonably well, speak fluently all or nearly all the time, etc. There’s a myth that you can tell a lot about an autistic person by looking at them. I’ve been trying to break down that myth by juxtaposing my appearance with my writing, but a lot of the time people still think I’m amazing or unique in this regard. I’m not. Or else they think my appearance itself is a deliberate statement about my other abilities. It’s not.

I look like this as far as I can tell because this is how I respond to my environment at this point in time, and because I have no cognitive energy to spare shutting those responses off (there are people who look exactly like me in private but can hide some or all of it in public, at tremendous cognitive and emotional costs that take a long-term toll on their energy levels — all that happened to me was I burned out far earlier than the people I know who are facing the exact same burnout in their thirties and forties). Not that I necessarily would if I could, but it’s a moot point because even when I pour all my energy into looking normal (as I was at one point explicitly trained in doing) I still don’t.

Similarly, the reason I type rather than speak to communicate is practical: If I type, I type more or less what I want to say. If I speak, if anything comes out at all, it’s random things that are anyone’s guess as to whether I mean them, and it makes me overloaded, and tired, and in pain, really fast. It likewise is not a statement on my other abilities or lack thereof. (I know people who can speak perfectly well — at least superficially — who have roughly the same abilities as me in other areas or find a lot of things more difficult than I do, people who cannot speak or type who are way better than me at some things… etc etc etc.)

One autistic person (babalon_it) writes in response to this video:

Wow. That was awesome. I kept feeling myself getting drawn into rocking and singing along with and feeling things and wanting to be there again. I was there when I was a kid. Before they took my soul and told me I couldn’t be that. Before I was taught it was defective to be that. To be me.

Yeah. Exactly. I was taught that all this — the way I perceive things, the way I react to things, the way my body moves in response to things — was inappropriate and somewhat disgusting. And I do note some combination of revulsion and pathologization in some (so far all non-autistic) people’s responses. (And the revulsion and pathologization go hand in hand.)

Someone said that instead of seeing any communication going on, all they saw was a dysfunctional sensory system. They were too repulsed, apparently, to watch more than a minute of the video before coming to that conclusion. Another person described my actions as obsessive-compulsive rather than meaningful. Despite my clear explanations of my own interpretations of my actions. (Which are not entirely deliberate, but which do seem to be a constant back-and-forth response to things around me. Get me around even more unfamiliar stuff and I’ll either do it more or stop moving altogether — or both in rapid succession.)

That’s the opposite of what I talked about before. Some people are willing to add in all kinds of meaning that isn’t there — that by appearing on a video looking the way I look, I am saying something about my other skills, which should all be in line with their stereotypes, and furthermore which should always have been in line with their stereotypes, etc. Some people are willing to take away all the meaning that is there, by claiming that what I am doing serves no purpose, is not communication, etc, and that it is purely a pathological process and they as outsiders know this better than I do. Some people do both at once. I guess I prefer when people do none of the above.

I do want people to rethink what they see when they look at people who look like me, or unusual in some other way, though. Not in order to make them suddenly think everyone who looks like me is like me — that’s not true. But in order to make them think there’s more to people than the emptiness I’ve seen attributed to many.

That said, behind the message I’m, as a person, just as self-conscious as I ever was. I’d think I’d have gotten over that by now. By the way, it’s a myth that autistic people can’t ever experience this. Some do, some don’t, from what I’ve seen. The reason isn’t of course because there’s anything inherently shameful or defective about being disabled/autistic/etc, but because we’re taught by most people around us that there is. Laura Minges wrote a wonderful monologue called Disability Shame Speaks (click through it, there’s several pages), that probably explains a whole lot of my current reactions to all this.

Additionally: There’s a person who wants to know if I am really typing this stuff. Anyone who wants to know that (and who isn’t one of the very few people I’ve already expressed a wish never to be in direct or indirect contact with) is welcome to look at the page I have on official documentation. Look at the last document. It tells you where I receive services. You are welcome to set up a way to meet me at that place, with either my staff or my case manager, at some point. At which I will make it as obvious that I am the one writing what I write as I have to. (An easier task for me than for people who use FC all the time. I only rarely need it, and therefore can make it obvious through what is usually fast ten-fingered typing that I am writing what I write. I know plenty of people who use FC, though, who are just as much for real as I am, and don’t want you to go away thinking they aren’t real but I am or something, although I have little control over that I know.) Same goes for people who want to know if I really exist or not. That’s a standing offer. If you want to email me, look at the web address for this site, and insert an @ instead of a . before autistics.org.

Disclaimer on Assumptions

Standard

I am not responsible for the results of your assumptions about me based on what youthink I mean when I say something, or look a certain way. In order to shake up a few of those assumptions before they cause trouble, I have made this page.

Let’s Play Assumption Ping-Pong is a good place to start. It deals with assumptions about my communication abilities over the years, and a little bit of assumptions about institutionalization and functioning level labels. I’m going to include more information on those and some other things on this page just in case your brain wants to stereotype me in some other area.

It’s been my experience that when people make assumptions, they think I’ve said something, then they get very angry when they find out anything that contradicts that. But they don’t get angry at their assumptions, they get angry at me. Please bear in mind that it is impossible for me to describe every aspect of my life simultaneously, and that describing one aspect is describing one aspect, at one point in time, and possibly incompletely.

Functioning Labels

When I write long things, that is not a statement that I am “high functioning”. When I appear somewhere, that is not a statement that I am “low functioning” (in fact, my appearace is not a claim of anything — it’s just my appearance, it’s like calling my hair color a claim to anything in particular). If you make an assumption based on one ability or another, about my other abilities, you will be wrong.

I can write long essays some of the time, sometimes can’t write anything at all, I have little to no communicative speech (see the original ping-pong post for more on the history there), I cannot cook ordinary food to save my life (and I’ve been in positions where I’d have to), I can bake a mean Swedish Tea Ring, I’m good at badminton and ping-pong, awful at many ball sports with large balls that require something other than triggered movement, mediocre at flute, a good singer, bad at a lot of self-care and everyday household stuff, great at things that are automatic or triggered, not usually so great (sometimes totally incapable) at things that are voluntary even if they’re the exact same things I do so well automatically, horrible at learning in classrooms, great at learning certain things on my own, and in general you have to have known me for a long time before you know what I can and can’t do at any given point. It’d do you well not to assign me a single, static, functioning level in any area, or to give me any sort of broad functioning level label as if one skill encompasses all the others.

And the way I come at a lot of these abilities, is not how you’d expect necessarily either, so I can do some things without what you might consider prerequisites to being able to do them, and can’t do other things despite appearing to have all the prerequisites.

Nor is it a good idea to assume this hasn’t changed through time. My set of abilities right now is not my set of abilities at 5, which is not my set of abilities at 10, which is not my set of abilities at 15, which is not my set of abilities at 20. I’ve lost some abilities, and gained some abilities, and had some come and go and come and go. I’ve learned and forgotten and learned and forgotten a whole lot of things over and over again. (I was also, to continue the hair analogy, born as far as I can tell with brown hair, which turned blonde for awhile, and then darkened gradually over the years to a brown so dark it looks black sometimes, passing through a few odd shades of reddish-brown on the way. This doesn’t mean I dyed it brown, or that the shifting around is volitional in some way.)

The only official functioning label I got was low-functioning, and I was as shocked as anyone when I read it in my file. This doesn’t mean I claim that label, or its opposite, but I’m likely to mention it — as an official label only, along with a lot of other words I either heard said about me or saw written on paper or found in recorded answering machine messages years later — as something that has been said about me, because it’s said about other people too, and I don’t tend to agree with it as a marker for someone’s future or even their present.

If you ever think, or hear someone claim, that by describing a certain set of abilities at a certain point in time, or looking a certain way, or thinking I look a certain way, I am claiming to be either mildly or severely autistic, think again.

“Placements”

Yes, I was in institutions and special ed. No, not throughout my entire childhood. In childhood I was in regular schools, a combination of public and private, and even went to college early. It was only after a few months of high school and then an attempt at college that I ended up in institutions and then special ed. And yes, in regular school people realized something was definitely up with me, but nobody really knew what.

When my abilities started shifting around right around puberty, school started becoming more and more incomprehensible (including sitting there and not understanding a word of language around me). Because I was thought to be bright, the assumption was that I was bored and acting out from boredom, rather than uncomprehending, so I was accelerated. It was only when I had a total breakdown from stress that anyone realized something more was up than that, although I’d noticed long before (but been unable to articulate anything, so I’d done all the things that had gotten me labeled “bored” instead, as an attempt to regulate the stress and overload). (For reference, the reason I don’t give specific place-names is because some of the bullies never stopped being bullies, and some of my medical records actually contain instructions to avoid people from some of these schools because of the extent to which people from some of them deliberately messed with my head and encouraged me to behave in “pathological” ways for their collective amusement. Some people have changed since then and admitted what they did was wrong. Others seem to have remained stuck the way they were back then, which seems sad to me because it’s been a long time.)

Institutions (of various sorts, and certainly not just one) happened at that point, and “in” was the same as “out” to me a lot of the time (since “out” was mostly confinement at home), but it gradually became more and more “in” as I realized I could not fit their criteria for “out”, which seemed to be becoming “normal,” which I was fully aware I couldn’t do (but which some other people held out “hope” for, while others wanted to write me off entirely, and those were seen as the two only choices).

I was “transitioned” out of institutions so gradually that I’m not sure where the dividing line is. I lived in two cities for awhile so that I could still go to one of them, and then I was in a weird combination of special ed and day programs after that that ensured that I was pretty much as segregated as I’d been on the inside, only with longer driving distances. Then I was out of special ed but still in the day programs, and then I was out of all of them but simultaneously didn’t realize I was out or that I’d ever been in. If that doesn’t make sense, I mean I still had all the same reaction patterns from when I’d been on the inside, but I did not believe I’d ever been institutionalized because the threat to send me indefinitely to the state hospital (which was the only place I thought was an institution) had never materialized. A man at a Center for Independent Living set me straight on that one when I was 19.

Diagnosis

I’m diagnosed as autistic. I was initially diagnosed as autistic in 1995. Because of a number of other things (seizures, personal distress, echolalia, things people had insisted were true about me and got me to repeat, statements made under duress, doctors who still believed autism was a “childhood psychosis”, confusion about how I communicated, an active fantasy life that both appeared and disappeared later than it does in most children, prescription drug side-effects including paradoxical effects, developmental delays in understanding certain things about the world, some fairly uneducated guesses I’d made about how things worked based on reading a lot of fairy tales, etc) I was diagnosed and often made to play along with a number of other things, mostly after that diagnosis. Those include bipolar, schizoid personality disorder, dissociative disorder NOS, psychotic disorder NOS, depressive disorder NOS, adjustment disorder, developmental disorder NOS, schizophrenia, schizoaffective disorder, cyclothymia, etc. I can’t easily remember them all. Contrary to people’s opinion, it’s only unofficially that I’m ever considered to have an intellectual disability, and at the time the only label I got was that I had a severe and complex neurodevelopmental disability that included autism and a lot of other things. I did well on a test of the “wisdom of the body” and was thus labeled as having “idiot savant features”. I can remember being made to say things that went along with them, whether I understood it or not, whether I agreed with it or not. (See the initial assumption ping-pong post if that confuses you.)

This was a matter of continued survival, but it hurt. It hurt because I had a growing awareness that none of this had anything to do with my real experience of the world. I developed a belief that I was deeply evil, but I had no idea how to communicate what Iwas really experiencing. I in fact had many genuine problems going on at the time, that I had nobody to talk about because I could only use things other people created for me.

When I became an adult, and was more able to communicate my own wishes (as opposed to someone else’s wishes for me and beliefs about me), I asked to go off all of my medications under a doctor’s supervision. I did this. After an initial painful withdrawal period, I had no hallucinations, no delusions, none of the other things that had been used as an excuse to put me on heavy-duty drugs for a number of years. Some of the “symptoms” I had even turned out to have been side-effects of the drugs that disappeared as soon as I was off of them. (I was on Phenergan, a chemical relative of the neuroleptics I was on for so long, recently for nausea, and it caused hallucinations.)

After that point I have tried to live my adult life with as much communication that isabout me, not about someone else’s ideas of me as possible. It has been a gradual process of honing communication skills, gaining more self-awareness and self-confidence, and learning that some things are even possible to communicate about (I suddenly had many medical conditions treated as an adult that I had no chance to treat as a child because I couldn’t say much if anything about them). I have also attempted to say what was going on during the many years when I had no words or only other people’s words, and was considered variously non-communicative or totally out of it.

What I say now sometimes conflicts with both some other people’s opinions of me and anything I would have said (when able to say anything) at the time, but it is to the best of my memory what happened. I take this very seriously, especially since I know there must be others trapped in the same strange way I was. Anyone claiming to know better than I do what is and was happening inside my own mind probably needs their telepathy checked and should not be trusted if they insist they know better than I do.

Anyway, my doctor (who initially diagnosed me) and I looked over everything and he decided the main labels that still fit me were autism, PTSD, and CNS disorder NOS (which was used to code the gradual loss of certain abilities I’d been experiencing since a bit before he knew me and continuing to adulthood). The rest were discarded as irrelevant, and they have remained irrelevant. His initial diagnosis of autism had been an oral one to my parents, while he wrote PDD-NOS on a piece of paper for the insurance company, because at that time (as is pointed out in Unstrange Minds, the author of which has a daughter diagnosed in that same time period) autism still meant no hope and he knew I met the criteria but (unlike several other professionals at the time) didn’t want to claim I had no hope, especially since there was serious talk about putting me in an institution indefinitely instead of temporarily. He re-formalized the oral diagnosis in adulthood, now that it would not be used against me.

Changes in Self-Awareness Over Time

I used to honestly and sincerely believe that I looked totally normal. I would tell people online that I passed for normal, and I honestly believed it at the time. I am nearly incapable of seeing people stare at me (although I’ve heard “Don’t you see people are staring?” for a good chunk of my life), and I thought the assorted random comments I got calling me a “retard” and such were, well, random, or even not directed at me. I had an internal image of myself that did not totally match my external appearance, and was thus always surprised when people reacted to my external appearance.

Then I started casually saying that I could pass for normal, to people who actually had met me. Their reaction was usually stunned laughter and “You can’t be serious.” Even this didn’t sink in. It wasn’t until I was at the Community Imperative conference in California that I totally grasped the extent to which my appearance differed from most people’s. I had, without thinking of it, not really said anything all day, I’d mostly been watching things and taking them in. Once I finally typed something, several people responded as if a potted plant had suddenly said “Hello. How are you? Nice day today, isn’t it?” And that’s when it finally fully sunk in that I don’t really pass.

Thus, it’s always possible that at some point I might have said something like, “I look totally normal,” and at a later date said “I don’t look normal at all,” but nothing might have changed about my actual appearance. What’s changed is my understanding of how my appearance is perceived by non-disabled people. Similarly, as I said, I used to claim never to have been in institutions, because to me an institution was only a state institution. So don’t necessarily assume that something has changed if I appear to have changed my mind, sometimes my mind is all that’s changed.

The Drug Thing

I did experiment with drugs for a brief period of time (a few months). People thought I was on drugs already, because of the manner in which I responded to my surroundings (see above about “not appearing normal”). This led to, among other things, offers of drugs, when I was both young and gullible. Many people around me thought that I hadstopped taking drugs when I started taking them, because I had a paradoxical reaction, as many autistic people do. At any rate, I eventually realized they were a bad idea and stopped.

I have had no lasting effects of any kind. My perceptions have not appreciably changed. There was question among doctors as to whether there was a long-term effect of the drugs happening at one point, but that was discarded eventually as it became obvious from my history that I had already had unusual perceptions which were not significantly altered in any long-term way by drug use. The only drugs that did have long-term effects on me were legally prescribed neuroleptics which affected my motor skills permanently. Also note that most people who were around me at the time have done more illicit drugs than I ever have, because I actually stopped pretty fast.

The fact that I was already and continue to be neurologically atypical and atypical in my perceptions and responses to the world (as well as the fact that much of what I could say at the time was vastly misinterpretable and heavily influenced by other people) has contributed to a myth that drugs are why I am weird, but it’s a myth. I did some dumb things as a teenager, like many people did, but like many people, they did not totally alter me for life.

So if you want to get to know me…

…read what I write here, and talk to me here. We may agree, or disagree, I may be right, or wrong, change my mind, etc, but I try to be accurate to the best of my ability. And over time you’ll see me as a complex person and not a strange set of assumptions that either are or aren’t being followed, and hopefully vice versa.

Comments from when this was a page not a post:


  1. January 24, 2007 at 4:14 pm

    Thanks for this and my apologies for making simplistic assumptions about you in the past. Us NTs, with our (allegedly) much vaunted superior theory of mind skills should learn to take what autistics tell us at face value. If it challenges our ideas we should change our ideas and not try to bend your words to fit our pre-conceptions.


  2. January 24, 2007 at 7:16 pm

    Thanks.

    I do remember reading anonymized descriptions of myself written by you, and thinking it was just as well that they were anonymized, because while I could vaguely recognize they were about me, and I could imagine them to be absolutely true of someone else, they certainly were not how I remembered things, even though I’m sure something I said gave you the impression they were true.


  3. January 25, 2007 at 1:50 am

    Because I was thought to be bright, the assumption was that I was bored and acting out from boredom, rather than uncomprehending, so I was accelerated. It was only when I had a total breakdown from stress that anyone realized something more was up than that, although I’d noticed long before (but been unable to articulate anything, so I’d done all the things that had gotten me labeled “bored” instead, as an attempt to regulate the stress and overload).

    Urgh, that sounds… similar to our experience in “gifted programs,” and I’m not sure that we wouldn’t have had a complete breakdown if we’d been kept in an “accelerated curriculum” beyond junior high. There were a lot of skills we just didn’t have that we could compensate for, for a while, through things like having a really good memory, but after a while that couldn’t keep things together.

    And yeah, the whole “bright kids act out because they’re bored” assumption screwed us over several times. There seemed to be this prepackaged assumption that whenever anyone labeled gifted acted in a certain way, it was always because they were “bored and needed more challenging work.” We weren’t even actually ‘acting out’ in the traditional sense, until we started kind of mirroring the behavior of a classmate who did– some of it was just stuff like coming close enough to shutdown that we’d basically sit there and stop responding to almost anything. And this always inevitably somehow meant that we were “bored” or “needed to be challenged more.” (The worst thing to us, actually, was when they thought we weren’t doing well for some psychological or manipulative reason, and started trying to therapize us– “You’re actually really good at this, you’re just afraid of success.“)

    We’ve had to tell several people over the years “If what we currently say about ourselves seems to contradict what we said in the past, take the more recent version as the more accurate one.” Mostly about plural-related matters, but about a few other things as well. And there are times when we worry that others will get the impression of us as flaky or untrustworthy because of that, but seriously, in a society that seems to frequently go to extreme lengths to keep people from being able to have any knowledge or awareness of how they work, and try to replace that with some generic ideal or fantasy with pre-chosen motivations, likes and dislikes, it seems surprising to us that more people don’t do it.


  4. January 25, 2007 at 1:26 pm

    Yeah. In my case it was mostly overload-type things and ‘stimming’ that got me in trouble.

    My brother made an interesting point related to this, that he thinks it would have been a lot more useful to him to be taught how to handle boredom, rather than to teach him that his boredom should be immediately assuaged by something interesting.

  5. Krista says:

    January 26, 2007 at 3:18 pm

    Hi. I got here from your link on YouTube. Thank you for sharing all of this – if you don’t mind, I’m going to create an RSS feed on Livejournal (my primary journaling place) so that I can keep up with and communicate with you. I appreciate that which I’ve seen you share so far and would like to get to know you.

    Again, thanks.

  6. Dawn says:

    January 28, 2007 at 4:01 am

    I arrived via Andrew Sullivan’s Daily Dish. I am awed! Your video has left me feeling humbled by the depth of our ignorance about the potential around us. Thank you for reinforcing so vividly that cognition need not follow any prescribed form.

  7. Jarrett says:

    February 25, 2007 at 3:30 pm

    Ballastexistenz wrote: “I was diagnosed and often made to play along with a number of other things, mostly after that diagnosis… [missing text] …I did experiment with drugs for a brief period of time (a few months). People thought I was on drugs already, because of the manner in which I responded to my surroundings (see above about “not appearing normal”).”

    I can relate to that as one of the millions who have been diagnosed with ADD. Stopping the medications (legal and otherwise) and learning to defend my “eccentric” learning methods was very difficult but ultimately the best thing that I could have done for myself.

    The big assumption with ADD is that I must be hyperactive and flighty in order for me to have attention deficit disorder. They think I’m trying to pull some kind of trick on them when I lose my car keys for the 3rd time in a month – because I’m “too smart” to do that kind of thing without an agenda or motive.

    The next assumption is that I should medicate myself to fit their idea of “functioning”. A few discussions with people in Crystal Meth Anonymous can reveal where that approach has led an alarming number of ADD diagnosees.

    The medications available would indeed allow me to remember where I put my keys but that would be all I was focused on… then you start the balancing act because nature has a way of raising the stakes on you. Yesterday’s cure becomes today’s nightmare addiction. I believe the road to hell is paved with Ritalin and Day Planners.

    There seems to be a lot of misguided blame in the world for things that most people should be able to forgive as they have experienced it on some level themselves. Why is it so incomprehensible to allow people to think differently?

    When people excuse themselves for forgetfulness with a statement like “I’ve just got a lot on my mind today” – I welcome their brief visit to my world with a chuckle.

    Thanks for the insight and perspective. I am enjoying learning so much on here.

  8. Katie says:

    February 26, 2007 at 1:12 pm

    Thank you for sharing your world with everyone. Your website and videos have helped me to understand and be more open on the way people communicate with one another. It has also helped me understand other people and the way they may percieve the world they live in.


  9. March 2, 2007 at 2:31 am

    You are truly an inspiration. I am designing a medical brochure for autism for a class I am in and I immedicatley remember seeing you on Anderson Cooper. Do you mind if I use your name?

    Thank you

    Sandra Lee

  10. Deb H says:

    March 11, 2007 at 12:10 am

    I am speechless and humbled. I learned, I hope. I apologize to you and every other person with whom I have encountered with Autism, who I misunderstood or made assumptions about. I will be better for this I thank you.

    Deb H

    Michigan

  11. April says:

    August 3, 2007 at 4:49 pm

    I don’t know why, but after reading your blog and about you, I thought I’d share my story:

    I used to work in a group home for developmentally disabled adults. When I started, I was given the low down on everyone. “This person has behavorial issues.” “This person can’t learn.” But lo and behold, in the morning when I was the only staff: The person who was “regressing” would sit at the table while I gave her words to write. The person with “behavorial problems” would sit and draw. The person who “wouldn’t come out of his room” would be in the front room dancing to music videos. The person who “couldn’t learn” and “couldn’t do anything” did everything himself, including shaving.

    At 7:30, another staff would come and make her rounds saying good morning to everyone. Everything would still be fine. But then 8:00 would come and everything would change when the rest of the staff starting showing up. These were the people who “trained” me.

    It’s so frustrating to try and make a positive influence in these people’s life just to watch in all go down in drain in a matter of minutes. How could these staff members who have worked with the disabled for years have such horrible attitudes?! Of course so-and-so has a “behavioral issues” — look at how you just talked to him! Of course so-and-so “can’t do anything” — you don’t give him a chance! So what if he moves a little slow, your cigarette break can wait. Look at him, he doesn’t want you to do things for him! He’s crying because you treat him like a baby, not because he has “issues.” Just because he can’t talk, doesn’t mean he’s not communicating with you. Pay attention!

    Well, you get the idea of how things really were. There were a handful of us who really thought that the purpose of the home was to get the “clients” out–whether it be on their own or in assistant living. But no, I’m sure you know that’s not how it is. They stay and nothing happens to them. Their whole life becomes waiting for family to pick them up and get them out of there–even if it’s just for a few days. And what could I do to change it? Apparently, nothing. Everytime I would bring something up, I was told that I just didn’t know anything. I was just a “kid.”

    Unfortunately, I ended up taking the whole situation home with me–I couldn’t get the wrongness of it off of me. After a while, I quit for a job in my field. Needless to say, I still feel guilt to this day for quitting. I’ve always wondered if my boys and girls thought I abandoned them. Do they really need me like I’m afraid they do? Does someone else know who likes what type of music or who likes to color and who likes to tell stories? Do they even know all their names? I still know all their names and they know mine — everytime I visit, I hear someone yelling “April is here!” The hardest part of visiting is always when they ask me when I coming back.

    Sorry this comment is so long, feel free to read (or not) and delete it. I guess I just wanted you to know that some people really care — not out of feeling sorry, but because they see disabled people as what they really are: individual people trying to make it through life the best they can — just like anyone else.

  12. SDSchaffer says:

    November 23, 2007 at 10:58 am

    Hi,

    I have relatives who make major assumptions where I’m concerned. Just yesterday, I realized my own grandmother’s assumption about me when she referred to me as ‘Mentally Retarded’ in speaking directly to me. Although the shock has subsided, I do now understand her assumptions about me.

    I suffer from Asperger’s Syndrome; my Nurse Practitioner diagnosed me two months ago. My grandmother has noticed the symptoms for years, and has assumed I’m automatically stupid and therefore, not worthy of being treated like the 36-year-old adult that I am.

    Also, I’ve had friends forbidden to speak to me recently, by others who have told them I am ‘Evil’, but will not give them or me a reason that I’m supposedly evil. They just look at me and assume I’m bad, which I must myself assume has something to do with my mannerisms and my facial expressions.

    At least I now know what I suffer from, and have a chance because of this knowledge to learn to cope with how others view me. But I think what hurts me the very worst, is being treated like a child because I’m not what others consider ‘normal’. This is especially devastating when I am treated this way by family members and close friends.

    Ironically, any time I gain a close friend, I automatically assume I’m not going to have that friend for long, because someone, somewhere, will do everything in their power to keep me from forging a strong relationship with those who identify with me. Because of this, I usually have almost no friends, at least of the kind who I talk to face-to-face. Online, I have lots of friends. But I wish people would look at me and see a human being instead of a potential danger.

    Thank you kindly for listening. I really needed someone to talk to, who would actually understand where I’m coming from. All this stuff with Aspergers is just so new to me, and I really do not have anyone to talk to who understands my situation, other than my Nurse Practitioner.

    Thank you for starting this blog, and thank you also for posting this article on assumptions. Have a good day, and I’ll be sure to read as regularly as I can. I want to know as much as I can about my disorder, and how it will affect me as well as others.

  13. Wolter says:

    September 1, 2008 at 5:34 am

    Very cool. Not even I have gone that deep into myself.

    Keep writing.

  14. Wayne Roberson, Austin, Texas says:

    September 14, 2008 at 5:02 pm

    Well written and insightful. Your continual updating of your ideas is valuable and necessary to understanding the events of autism. Thank you. Wayne

  15. Manarsa says:

    February 2, 2009 at 9:12 am

    From what I’ve read you seem absolutly amazing. The people you know personally in your life are truly blessed to know you and I hope they are greatful that you exist.

  16. Hilary Ann says:

    August 1, 2009 at 3:25 pm

    You have blown my mind today. There was me before seeing your videos and reading your blog – and then me afterwards. Know that you are doing something really valuable. Thanks


  17. September 12, 2009 at 6:42 pm

    April……..I can totally relate to your comment about the group home. I volunteered at one for a while, but one of the staff bitches sexually harassed me, so I had to leave. I had a particularly close relationship with one client specifically………I mean to say that I connected with him in a way that I don’t think anyone else there could have…..except perhaps the other clients. I miss all of them terribly………I can’t stand to think they’re in the hands of people who call them crazy and bad and stuff like that. I’m STILL ashamed of myself that I haven’t been back there yet.

    The Integral

Let’s play assumption ping-pong again, or not.

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It seems as if I may have to reiterate a post I made last March: Let’s Play Assumption Ping-Pong. It describes pretty accurately some of the assumptions people make about me, and why they end up wrong, and why even the assumptions they replace them with end up wrong.

Basically, if I tell you something, or look like something, and you make an assumption based on what I told you or how I look, don’t blame me when your assumption turns out not to be true. I cannot possibly write my entire life’s story in all its nuance and detail every time I communicate with somebody. It’s not possible, and even if it were possible I doubt it would be desirable: I usually want to just interact with people as who I am, not fill in loads of backstory and self-dissection every time I talk to someone.

And please read that ping-pong post if you have any inclination at all to assume things of this nature, it will save me and possibly you a lot of trouble. I’ve also written a longer disclaimer on assumptions to disabuse people of many further assumptions.

Because I have never liked gravitational metaphors of depression.

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…they always seemed backwards to me, all the stuff about “falling into a depression”, as if gravity would always pull you down into the dumps. So I wrote these, instead. (Don’t remember when, they’re in a giant file of my poems.) Because it seems to me the opposite, depression involves pulling yourself away from reality, against gravity.

Rising Into Sadness

When the world is a graveyard
Of dusty skeletons falling apart
And the sky cannot be seen
And even the pines are no longer green
I know that there have been
Too many words

Falling into Joy

Tossed for moments into living color sky
Ever falling back to a cushion of drabness
This is the way of the world, we said
Watching our eyes adjust to the dimness
Gravity works funny ways, said the world
For those who trust in words
Laughing to itself
As the ashen floor crumbled
Knocking the wind out of us
Smelling the soil as sky blinded our eyes
We had landed on solid green

Now they apparently believe I have asthma, but they’re asking me to do the unthinkable.

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I just got this in the mail today:

We have received the results from your lab work. The tests show significant allergy to cat and dog. You are also allergic to grass and tree pollens.

In order for your asthma symptoms to improve it is very important for you to have your animals placed in someone else’s care.

Okay, I’m also allergic to grass and tree pollens. There’s a tree outside my window, and a lawn when there’s no snow, should the landlord cut down the tree and poison the grass?

I have lived with this cat my entire adult life. She is part of my family. I love her. If I were allergic to my brother, would they have told my parents to have my brother adopted out to another family? This is a cat who, when I left her at home but in the care of a staff person she really likes, for two weeks, when I was out of town… she meowed continuously all day until she lost her voice and then kept trying to meow. We’ve lived together for seven years now. Both of us would be devastated if we were separated for too long.

I have not lived with the dog as long, but she is part of the family too now. She was neglected earlier in her life, she was found wandering around. She seemed not to believe she was going to stay with me, it took her a long time to settle in. After she had to live somewhere else while I was relocated because of concrete dust in my apartment, it took a long time to convince her again that she was living here for good. There is, again, no way that I would put her through another relocation and another set of “Is this person really going to stay with me forever?” worries on her part.

So, no, he’s going to have to find another solution, like allergy shots or something, because I’m not going to “place my animals in someone else’s care” as if they’re just disposable objects and not people.