Today is Blogging for Women Who Support Us Day, and I really haven’t forgotten, I’ve just had stomach trouble from antibiotics, so it’s hard to focus on writing a new entry.

I will dedicate a post to a woman who supported me and who had a great positive impact on my life and the direction I took. Please join me by also writing a post for the strong women – past and present – in your lives.

I’ve been fortunate to know a lot of strong women. I’ve described a few in my life before, so here are some I haven’t described as much.

Relatives first, I guess.

My great-grandmother, who I wish I’d known better than I did (and yes, I did know her), traveled to America by herself while she was still a child. She raised seven children (several of them would have been classified as disabled by today’s standards, although I’m sure the family would be shocked to know that, and one of the probably-autistic ones ended up being her caregiver in old age) during the Depression. I have trouble seeing her as anything but a strong woman, and I regret that she died before I had the chance to know her better (I was 11 or 12 at the time).

My mother was often quite explicit about certain kinds of gender biases. I remember a boy coming by and playing with the toys, and saying an ambulance driver had to be a man. She’d ask him, “Why does it have to be a man?” She asked those kinds of questions all the time.

Non-relatives:

One of my staff in California, Debra Kahrs, introduced herself by saying she believed women could do anything men could do, and she believed strongly in equality for women. She’d worked in non-standard jobs for women, like construction, and taken a lot of flak from the guys. She had been in the psych system as a teenager, and understood what it meant to be under the control of staff. She lost her job at least once for taking a client’s side in things and teaching a client self-advocacy by example. She tried to go by what was right, rather than what was policy, at a fair amount of cost to herself. She also came with me to Autreat and co-presented on institutions with me.

Cal Montgomery is a disability rights activist who has had a fair amount of influence in my life, both personally and intellectually. She’s been a friend, and she’s also been someone to bounce ideas off of and see what she thinks, or to see new ideas from. She’s been there for me at times when almost nobody else was, when I was depressed or having flashbacks. I can say that most of my thinking as an adult has been influenced by her (in a good way) one way or another.

It’s hard to write about human beings with that much influence in my life, in short little paragraphs like that, but it’s what I can do at the moment.

Someone wanted to find webpages/blogs/etc by autistic men, not just women. (And I’ll admit the online autism world is overrun with autistic women.) So here are some, feel free to post more:

Some blogs:

Aspie Dad
Autistic Minds
Freak Power
Homo Autistic
Ian Johnson’s Neurodiversity Blog
in regione caecorum rex est luscus (the blog of the one-eyed autistic king)
NTs Are Weird
Just This Guy
Pre Rain Man Autism
A Gadfly’s Gadfly
Tony’s Down Under Blog
Torley’s Second Life and Techno Music Blog
Weblogue de Joffrey

Some websites:

This Way of Life (Joel Smith)
Ralph Smith
My Classic Life as an Artist (Larry Bissonette)
Autistic Spectrum (Lars Perner)
Articles by Eugene Marcus
Bradley Olson — A Person With Autism
Brian’s World
David Miedzianik
Kevin Phillips Asperger Site
The Autism Picture Page (Lindsay Weekes)
Inside My Head: A Page on Asperger’s Syndrome (I don’t know if the person in question is male or female)
Richard Wawro (art)
Roger Meyer

Apparently someone’s uncovered the “shocking” fact that as a teenager, I was (mis)diagnosed with schizophrenia. (They could’ve saved their time and read it on my blog, where I’ve mentioned it, but anyway.)

They might be unaware that this took place after an initial diagnosis of autism elsewhere, and that pretty much their sole evidence for the “schizophrenia” was that I was trying to convince myself I wasn’t human and had a fantasy world that I tried really hard to act out in my head as if it was real. (A pretty common thing for autistic girls to do as teenagers, according to Tony Attwood, and a really good way to end up with a diagnosis of psychosis in an autistic person.) They might also be unaware that the diagnosis also stated that I had been “psychotic” since very early childhood, and only “became schizophrenic” (i.e. started trying to convince myself I wasn’t human) more recently. How do you tell if a very young child is “psychotic”? It can’t be hallucinations or delusions, because those would be either invisible or indistinguishable from normal make-believe play. It would have to be the so-called “negative symptoms” — i.e. the things that are identical in appearance to autism. My parents, in fact, attempted to tell them that I’d been considered autistic because of these things, and they were told this was “childhood schizophrenia”.

They might also be unaware that this was the facility that told my parents that they, specifically my mother, had caused me to become “psychotic” and then “schizophrenic” as a result of a poor parenting style. And that also forced me to “admit to” hearing voices I didn’t actually hear, and was shut down because nobody would send their kids there anymore, especially after a guy died there. So anyone who supports the rulings of a facility like this one is supporting the refrigerator mother hypothesis of autism, and the few throwbacks in the mid-nineties who still believed that sort of thing in America (yes, it wasn’t entirely dead by then). And supports a psychiatrist who has been successfully sued for malpractice before.

When I was later sent to special education, I was sent there as someone who’d had a number of diagnoses, and autism and schizophrenia were both listed among several others. Because I had been trained, by a guy who among other things believed in involuntary trance induction as part of his “Ericksonian psychotherapy technique” (also apparently believed in beatings, etc), to “admit” to all sorts of experiences and beliefs I did not have, and I was now terrified to go against him (he had told me he would go into my head, kill the person I was, and replace me with someone else, and that I would die if I disobeyed him — and I’m the one who was supposedly out of touch with reality, hmm), it was generally accepted that he was right about me, and I was encouraged to write about myself that way. (This is called an iatrogenic problem, by the way, and the patient is not generally considered at fault for it.) Heavily trained echolalia, by the way, is no substitute for communicative speech, as became obvious when I had life-threatening medical problems while under this guy’s “care” and I didn’t say anything about them. (This doctor also trained another person he diagnosed as schizophrenic, to recite obscene phrases about Jesus and the Virgin Mary. He found this amusing.)

However, when I got old enough, I asked to go off all of my medications. Amazingly, something strange occurred: I did not hallucinate (except during seizures, which were subsequently treated, and abuse flashbacks, which are pretty discrete events). I did not hold any particularly bizarre beliefs. After a period of withdrawal symptoms, I gained abilities, rather than (as threatened) losing them. My psychiatrist (who’d known me since pre-schizophrenia-dx days, and who I was only transferred away from — to the place where they diagnosed schizophrenia — for insurance reasons) decided there had been some misdiagnoses along the line, and we worked out together what they were. I gained more and more ability to tell people what had been happening in my head the whole time, rather than either not being able to say anything, or only being able to say what I’d been taught/forced/encouraged to say, or (in one intermediate stage) being able to say part of what I meant but having it come out wrong… and I took (and take) that ability very seriously.

It should also be noted that the developmental services systems in both states I have been in, have had to have proof that I was developmentally disabled. If they did not have that proof, they would not have accepted me as a client (I know a guy who can’t get services through the California system, despite having four different developmental disability labels, because his psych label is said to take precedence, so this is not something they would have accepted without documentation that prior to the age of 18 I already had a diagnosis, which I had from the age of 14). Both are fully aware of my past diagnoses, so much so that they’re mentioned in one of my individual program plans. So is the Social Security Administration. Last time I was given an SSI re-evaluation, I saw a psychiatrist there, who gave me a bunch of tests (including tests that autistic people tend to do really well on and non-autistic people don’t — and that I excelled at), asked me a few questions, and told me that he’d read my records and found it very sad that I’d been misdiagnosed in the middle of things there.

I also at one point wrote to one of the doctors at that treatment center and asked him what exactly they’d thought about the state of my communication at the time I knew him. I’d finally received documentation about what had actually happened to me, including gradual decreases in useful speech and voluntary movement throughout adolescence (which happens to some autistic people, including some with prior speech, and which were in fact the reason for an initial referral to a neurologist when I was 12 or 13). As in, there were official papers written on it, and such. (And I have now met people with Asperger diagnoses who can’t speak as adults because of things like this.) I wanted to know what on earth he had thought those things were (my previous doctor had coded them under “central nervous system disorder, not otherwise specified”, prior to knowing this research about this happening to some autistic people). He told me he had assumed they were due to “command hallucinations”. Nope, but that’s the level of thoroughness with which he checked his assumptions in general.

If I both believed that the word “schizophrenia” actually referred to anything (and after a lot of study, I don’t think it does), and believed that it fit me in some way that being autistic didn’t account for (which it doesn’t), I would be proclaiming my “schizophrenic pride” as thoroughly as I proclaim my “autistic pride”. As it is, since I don’t think either of those things, I still take part in some more generic “mad pride” organizations like Mindfreedom International (and I still have a psychiatric label — post-traumatic stress disorder).

I find it very interesting:

I have a sprained finger that is permanently crooked.

When I first showed it to a doctor (after it had already healed wrong), they thought it was a break, so I talked about it and treated it as if it was a break. It’s written up in some of my official records as a break.

They later x-rayed it and found out it was a badly-healed sprain, not a badly-healed break. I only found that out last year.

Suddenly, they no longer refer to it as a break, but they don’t give me any crap about the fact that they (and I) once thought of it and treated it as a break. Nobody else does, either, really. Nor do they question the fact that I don’t bother telling people it used to be thought to be broken. Yet when this happens in the realm of psychiatry, it’s somehow treated quite differently. Fortunately my psychiatrist is totally willing to admit his and others’ prior mistakes as mistakes, and leave it at that.

At any rate, the only particularly strange part of these events in my life is that the autism diagnosis actually predates the schizophrenia diagnosis. And I’d bet that’s happened to others as well (actually, I just realized that it happened to my friend Stan). At any rate, I have a friend who made up the acronym TAFKAS (The Autist Formerly Known as Schizophrenic), to describe this, because it’s such a common phenomenon. (In fact, until the year I was born, autism was not separate from schizophrenia in the DSM at all.) So being labeled “psychotic” is a trait I share with Donna Williams, Wendy Lawson, Larry Bissonnette, Laura Tisoncik, Mary Newport, Edgar Schneider, Georgiana Thomas, Sondra Williams, and many others, both speaking and non-speaking (and everywhere in between) at the time of that diagnosis. (For instance, look at Larry Bissonnette’s diagnostic history, he’s another mostly-non-speaking anti-cure autie with a plethora of diagnostic labels in his past, and who has echolalic speech that doesn’t necessarily reflect what he’s thinking.)

But go ahead and refer to me as crazy, if it makes you feel better. I do align myself with the mad movement as much as with the autistic one, and I’ve had many experiences in common with those described as the various psychiatric elaborations on the word “crazy” (as well as still carrying psychiatric labels beyond autism to this day). It just doesn’t mean I’m not autistic, any more than my finger wasn’t sprained just because people once thought I broke it.

Tom Bombadil was a Tolkien character who appeared pretty close to invincible in the setting the other characters encountered him. But he refused to stray past a certain set of boundaries that nobody knew except him. The evil ring the story was named after had no power over him, but could not be left with him for safekeeping because “…if he were given the ring he would soon forget it, or most likely throw it away. Such things have no hold on his mind.”

Axinar was talking about what he sees as different subtypes of autism, and said:

Of course Ballastexistenz herself has illustrated, at least to me, that this Autism Spectrum may have at least two dimensions.

You see, reading through Ballastexistenz blog it would appear that her cognitive abilities are almost completely unaffected. In some ways, in terms of her ability to observe and process information, she’s in better shape than my dad.

And it dawned on me, one reason that I always have trouble when autistic people are split up into types by this kind of thing: Usually the different typings, presumed to be mutually exclusive, apply to me at different times in my life. So if you ask me to split autistic people up into subtypes, you’re asking me to split myself in half, and to split a number of other people in half as well. Because a lot of these so-called subtypes are not, as far as I can tell, about underlying brain organization, as much as about what the person’s doing with that brain at any particular point in time.

When I was a school-age child (but not before and not after), my thinking often appeared very inflexible and rigid. This was not because my thinking is just naturally that way. This was because the kind of thinking I was trying to use was outside of my natural areas of competence. I managed for a time on sheer brute force, and the strength of that brute force created the apparent rigidity (as well as the moodiness, low frustration tolerance, coming home from school and screaming and crying all night, etc). The kind of thinking I was being expected to use, was the kind that requires stacking blocks on top of blocks and remembering where you put all the blocks in order to avoid knocking them all over. This is not sustainable, eventually they all fall down.

And when they all finally fell down, the rigidity in my thinking was almost gone. I was of course still grasping at those blocks, at random sometimes, producing some fairly scrambled-looking results. But I could not sustain it enough to sustain the kind of rigidity that held them together in the first place.

If I am pushed to engage in that more difficult kind of thinking, even today, I will suddenly appear rigid, black and white, and every other stereotype in the book about autistic thinking, few of which actually apply to me in daily life. It comes from the force of trying to hold foreign ideas together in what amounts to a foreign cognitive language, and watching them all slip away as rapidly as I can put them up. The easiest way to do this to me, is to make me do intellectual work to a deadline. I might get it done, but I become rigid, explosive, self-injurious, and so forth, along the way, and then everything shuts down for a long time afterwards. For those who think that blogging means I could hold a writing job, there’s your answer. When my staff hear I’m writing to a deadline, they give me a wide berth. This is also one reason why I don’t present at conferences more often than I do. You can also get the same reaction out of me by expecting me to perform intellectual tasks in an unfamiliar environment. (Note that for me, “intellectual tasks” start at the level of recognizing the typical identities and functions given to objects,and then work their way up from there.)

But on my own ground, I’m incredibly competent. What people don’t see, is the fact that I rarely stray off that ground. (That ground, by the way, contrary to Axinar’s statement, is far from being unaffected by autism. My way of thinking is in fact a very autistic one. But “autistic” does not mean a certain stereotype.)

About seven years ago, I was given a bunch of extra equipment for my (still) camera — a nice telephoto lens, a flashbulb, and a light meter. It made no sense to me, it was a jumble of chaos, and after a bunch of frustrating sensory explorations of the equipment I put it all in a box and forgot about it.

I opened the box two days ago. I could instantly mount and use every single piece of equipment that baffled me seven years ago.

I can’t even count the amount of books I have poured into my eyeballs without always understanding them. I could read a book and be unable to answer questions about it right afterwards. But given enough time, the information sinks in somewhere, because it’s there when it’s called up some other time.

This is the territory I operate best on, the very non-foreign cognitive territory that allows me to do all the things that seem to impress people overmuch. But it’s also the territory that gets the least respect for what it is. People see me operating well on this territory, and they want, expect, and sometimes demand me to step over into a kind of cognitive territory that, if I did, would result in a short blast of achievement (if anything is achieved at all, which isn’t always) followed by weeks of burnout and shutdown.

They see the extent of my triggered knowledge and expect me to answer questions that don’t trigger that knowledge, they see the gracefulness of my climbing and expect me not to fall on my face while walking, they see how detailed a triggered memory can be and expect me to call up non-triggered memories on command, they see how well I learn when the material is given and then allowed to percolate and expect me to learn well while they forcefully cram information into the parts of my head least equipped to process it.

I was in a room full of people with intellectual disabilities recently. We were all given a form to fill out. Some of them had trouble reading the form, but could answer the questions once they understood them. I could read the form at a glance, but I could not answer the questions (like “Why are you here today?”). Guess which one of us was more confusing to the staff.

Someone replied to my video making it sound as if I have simply not been pressured enough, that if I were pressured enough, I would give up the activities I am good at, and somehow gain all sorts of abilities I’m not so good at. That’s not how it works. I don’t learn through pressure. Excess pressure in fact may have created the burnout of a lot of those things that I wasn’t so good at to begin with, but now can barely use for any length of time at all. The more pressure you put me under, the less I can do, understand, and learn.

I can say, that if I were forced to move into that foreign territory (and if I were even capable of sustaining life there, which I’m not), I would look less intellectually competent, more rigid, more black and white in my assessment of the world, and like I was missing a lot more information about the world. And I would be thus classified into a different “type of autism”, when really all that’s happened to change me from that “rigid-thinking type” into the “type” I am now, is I’ve become much more efficient at staying within my own territory, and much less able to stay within foreign territory.

I suspect much “rigid thinking” among auties (when it’s actually rigid and not just thought to be) is actually an artifact of trying to brute-force thinking with cognitive equipment that isn’t what they’d be most skilled at, rather than a fixed trait of the autistic mind. Sort of a by-product of mental overclocking.

I’ve also noticed, in the changing-over-time department, autistic people who describe thinking like me (as I think now), and then they describe that as a way they used to think. In some cases they view it as something they were glad to discard, in others as something they wish they could get back to but can’t. And now they are way more at home than I am in the kind of thinking I’m not so good at, even though in the past they weren’t. Some so at home that they cannot conceive of understanding something without words, for instance, despite the fact that many of them had a time period when their best understanding of things was largely or entirely wordless. The changes happen in more than one direction.

Meanwhile, I still do best, like Bombadil, in my own territory, even if nobody else knows quite where the boundaries are, and even if the boundaries shift a little every day. But a lot of people who interact with me treat me as if I don’t know what I’m doing, as if they in fact know what’s best for me, and that if I don’t go along with what they’re expecting of me, then I’m either stubbornly refusing to do what is good for me or unaware of what is good for me. The idea that I already have a better idea of what’s good and bad for me than most people, doesn’t cross their mind, nor does the idea that I’m more able to do things overall if they’re done the way I think best, not some other way.

Basically, put the information there, let it come out on its own time. That’s how I best accomplish things — the results are higher-quality, too, than if I’m forced to do it some other way. So even if the way I do (and don’t do) things doesn’t seem to have any rhyme or reason to it, even if you can’t see the boundaries of my abilities, it’d be best to respect that I probably know more about them than you do.

…of course nobody’s ever figured out Tom Bombadil either, despite years of ridiculously complex analysis on lots of people’s parts.

Tom’s own response to being asked who he was: “Don’t you know my name yet? That’s the only answer. Tell me, who are you, alone, yourself, and nameless?”

Heather at Especially Heather wrote:

I know that there are those out there who view her only as a disability. I know that these people exist, Ive met them first hand. I also know that Emma’s voice has just as much meaning as your’s and mine. Its awkward dance has just as much passion and definition. It’s unsteady flow does not negate it’s importance. It breaks my heart when I see people in the medical field refer to children like Emma Grace as “broken”, “retarded”, “Devoid”. It saddens me to think that there are campaigns in place right now that devastate mothers as soon as their child is diagnosed. I was so blessed to have the support system I had when Emma was first diagnosed. There is so much hope in this diagnosis. So much support and love. These children have voices, they have the ability to communicate, they just sometimes do it in ways that seem so trivial and unnatural to us.

All of these children have something to say, hopefully we will all take the time to stop and truly listen.

She did a video of her beautiful daughter here:

Another beautiful kid:

And a video written by a really cool autistic kid:

My favorite lines from the last one:

“My biggest joy in life iterates your insistence that I am not disordered. Other worldly to you, but to me it’s merely my everyday splendor.”

I have long had trouble understanding the idea that people like us are somehow otherworldly, and he puts it pretty succinctly.

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.

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.

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

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.

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.]