Michelle Dawson is in the news in Autistes: l’intelligence autrement. That’s my favorite of the newspaper articles currently circulating about this research, but it’s in French. The autotranslators were seriously mangling it in places. I found myself in the odd position of being able to read it just fine in French, but having a good deal of trouble rewriting it in English. (I wanted to be able to show it to a few people who didn’t speak French.) So this is a translation, and yes, I’m aware there are parts I could’ve translated differently.

By the way, I haven’t had that much formal exposure to French (and could not have read an article like this when I did), but I read a lot of French and watch French-language TV and understand a fair bit. I think this falls under the category of the kind of learning that Michelle describes in the article. (By the way, I could also produce French sounds at a much later age than people are supposed to be able to produce them if they are not exposed to them at a young age. I can also produce and differentiate sounds in many other languages that I was exposed to even later. Michelle once pointed out to me that the neurotypical loss of this ability to hear and produce sounds is somehow never regarded as a “regression”, yet when autistic people lose abilities, it is considered a regression.)

Autistics: Intelligence Differently

Pauline Gravel

A team from the University of Montreal demonstrates that the current methods employed to evaluate the intelligence of autistics are inadequate.

All is false. The majority of scientists are biased. The measurements they took until now are not representative and contribute to the myth that the majority of autistics are intellectually impaired, or, exceptionally, “idiot” savants.

The team of Laurent Mottron, professor at the department of psychiatry at the University of Montreal, threw a stone in the pond of this consensus, maintained too long, yesterday, within the framework of the congress of the American Association for the Advancement of Science (AAAS) in Saint Louis, Missouri. In collaboration with Michelle Dawson, an autistic researcher, Dr. Mottron has demonstrated that current methods for evaluating the intelligence of autistics are inadequate and don’t permit the revelation of the true level of intelligence of these people, who are sometimes mute and whose bizarre behavior in certain areas has often led to an underestimation of their intellectual capacity.

To adequately appreciate the intelligence of autistics, Dr. Mottron also emphasizes the fact that they are often evaluated at the age of four or five years, well before an autistic child reaches his full intellectual potential, which often appears only around six years. However, this early estimate would most of the time involve an underestimation of their level of intelligence. “Such an erroneous judgment will have disastrous consequences for the child who will be diagnosed with low-functioning autism, because the material and the occasions he needs in order to learn and develop will not be offered to him,” says Michelle Dawson, who emphasizes the fact that there was a time in her life when she presented the appearance of a low-functioning autistic.

Negative Vision

In most research centers and clinics in the world, the IQ of autistics is measured with the Weschler scales which are made up of 11 supposed sub-scales to create a representative sample of different characteristics of human cognition. Autistic people who master oral language are rather mediocre at verbal subtests, in particular those known as comprehension, but they literally excel on tests of block design, in contrast to non-autistic people who invariably present the same mean level at this last task. “Autistics clearly have a peak of ability on that particular subtest which consists of reproducing a geometric design with the faces of cubes,” emphasizes Dr. Mottron, who directs the autism specialist clinic at l’Hôpital Rivière des Prairies. “However for about thirty years, a dominant hypothesis in the scientific world has said that if autistics were good at making designs with blocks, this was inevitably because they had a deficit in the processing of global forms. On the basis of an absolutely uncontested dogma that autism is a disease, scientists look for what does not function in autistics. They seek deficits that they dream of pairing with genetic or cerebral anomalies.”

“There was, however, no evidence that this peak of ability in block design was caused by a weakness, it was only a presumption, and we demonstrated this in a previous publication,” adds the cosignatory of the article presented at the AAAS, Michelle Dawson, who forcefully deplores this too often negative vision of autism.

A Different Brain

On the basis of the idea that autistics, with a different brain than that of the majority of us – whom Michelle Dawson designates as the “typicals” –, can succeed at certain tasks better than we can, the researchers at the University of Montreal endeavored to seek these strengths that most autistics have. Because indeed, almost all autistics present peaks of ability: Some are prodigious musicians, others are equipped with exceptional spatial orientation, a certain proportion are calendar calculators, they manage to find the name of the day corresponding to a date given from the future correctly by looking at a calendar of the current year, a prowess which requires a very powerful algorithm.

In this way, the researchers discovered that these same verbal autistics did much better (30 percentile points higher than with the Weschler) on the Raven’s Progressive Matrices test, a test of problem resolution that implies a high level of abstract reasoning, but which does not require verbal instructions. What is more, certain mute autistics who had been categorized as mentally retarded because of their very poor performance on the Weschler scales, attained exceptional scores (sometimes the 95th percentile) on the Raven test, whereas certain proofs of the test require linguistic logic to solve in typical or non-autistic subjects. “That thus proves that autistics do not function like us, that they don’t solve problems by the same trajectory that we do,” affirms Laurent Mottron. And nevertheless, non-autistic people obtain equivalent results on the two tests (Weschler and Raven).

John Raven made this test to measure the ability to learn, and to evaluate intelligence independently of the level of culture, emphasized Dr. Mottron. Armies around the world use it to find out the “understanding” of volunteers, given that recruitment is often carried out in underprivileged sociocultural milieus. As it is completely free of verbal instructions, the Raven test has also been useful for anti-racist purposes, to show that populations who had little access to written language had the same level of intelligence as others with more education.

A Strength Interpreted As a Deficit

A number of scientists associate the peaks of ability in autistics with a strictly perceptual intelligence, which they often consider a not-very-advanced cognitive faculty. Yet, certain tasks on the Raven test seem to require a cognitive processing more complex than simple perception, notes Laurent Mottron. However, autistics, use perception in a different way than we use it, and this, to solve tasks known as intellectual. “Perception is superfunctional in autistics who discriminate better than we do on the visual and auditory planes. It probably plays a more important and more effective role in the resolution of tasks that call upon the intellect, than among the typicals,” he emphasizes.

When they look at an object, autistics categorize and generalize much less than typicals. Still, they meticulously explore the appearance of the object, its brightness, its shape, and make of it a very thorough, deep processing that opens many doors for them, explains the researcher. Autistics seem to learn many more things than us by simple exposure. “We assimilate information without making an intellectual effort, in a fashion less voluntary than the typicals, and without really knowing what we are doing,” specifies the autistic Michelle Dawson. “This knowledge sits in my brain without doing anything until I find myself in front of a task in which this information is integrated and is used to solve the problem.”

By contrast, when Laurent Mottron reads a scientific article, it’s to seek certain information that will confirm or invalidate his starting hypothesis. “I don’t memorize everything, I cut off all unrelated information, to not let it distract me. And if I later need other information that can be found in the same article, I read it again,” specifies in his turn the psychiatrist who does not stop emphasizing the incredible contribution of Michelle Dawson who became his colleague at work nearly three years ago. However, one can question Michelle after she has made a reading of an article, in the same fashion that one can question a database, because Michelle doesn’t have preferences in what she memorizes. She assimilates many pieces of information even if she doesn’t know if they will be useful to her. But then, she connects this information with what she hears or sees and that gives her many new and unforeseen ideas for apprehending a problem. What is more, her thought is never partial whereas ours is constantly because we seek for years to defend the assumptions we have developed.”

For Michelle Dawson and Laurent Mottron, the perceptual intelligence of autistics is without contest a true intelligence. The autistic researcher believes “It is necessary to evaluate intelligence by an individual’s capacity to carry out or not carry out a task, rather than by the fact that he arrives there by typical or atypical means.”

On Autism’s Edges is Five Star Autism Reading. What I’ve written in this entry isn’t all “five-star” (I have a horrible time figuring out starring systems like that, I always want different ratings for all different parts of something), isn’t all directly autism-related (although I think all of it should be relevant to people concerned with autism), and isn’t all even technically reading. Nor is it complete. But it was inspired by the Five Star Autism Reading thing. Ways of finding the books, or occasionally reading about the books, are linked to on the images of the books themselves.

These books are Temple Grandin’s Emergence: Labeled Autistic, Donna Williams’s Nobody Nowhere, Sean and Judy Barron’s There’s a Boy In Here, and Thomas McKean’s Soon will Come the Light. They were some of the first books out there by autistic people.

I hear a lot of people saying that these stories are stereotypical. It’s important to realize that at the time each of these was written, the authors did not conform to stereotypes. “Thinking in Pictures” was not an autism stereotype until Temple Grandin wrote about it. She didn’t conform to a stereotype (in fact she demolished several), one got defined based on her. The same goes for all of the other three books.

This is not to necessarily say I like these books (I do, to varying degrees, like some of them). But all of them are important, because they’re the first widely-published books about autism with autistic instead of non-autistic authors. And complaints about stereotypes may be legitimate, but it’s important to remember that each and every one of these authors broke several in writing these books. In fact, all of these authors wrote about things that many more recent authors seem reluctant to write about, which is one thing I like about these books. There was not as much of a fixed pattern for autistic autobiography back then, so they did not conform to one.

All of these authors have gone on to write other books. (Two of them have even collaborated.)

Stephen Wiltshire and David Eastham’s books seem, at least in America, to be obscure. So obscure I can’t even find David Eastham’s first book, only his second, and that one was published after his death. Someone who tracked down most of Stephen Wiltshire’s books for me had to order one of them from as far as New Zealand.

I don’t know why this is. Stephen Wiltshire’s art is fantastic and he’s won awards for it. David Eastham is as far as I know the first autistic author to publish a book as an autistic person. Both of their books seem unreasonably obscure.

Not Just Anything by Donna Williams, The Light Within by Lincoln Grigsby, and And Love Was All He Said by Michael O’Reilly are all books of poetry by autistic people. And they’re three of my favorites. My tagline for this blog is from And Love Was All He Said.

Beyond the Silence by Tito Rajarshi Mukhopadhyay, Lucy’s Story by Lucy Blackman, and Reflections of Self by Sondra Williams are my current favorites among autistic autobiographies. They say things I’ve found hard to figure out how to say, and that’s probably the common thread among them.

All three of these books are collections of writing by autistic people. Sharing Our Wisdom is conference presentations by autistic people who would be regarded as all over the “spectrum”. Women from Another Planet is writing collected and written by autistic women. Autism and the Myth of the Person Alone is by autistic people who were once intellectually underestimated, learned to communicate in unusual ways, and now type independently and/or speak. I find it more useful sometimes to read books with many perspectives, like these, than to read books with one, and so these are more interesting to me than most autobiographies.

Speaking Up and Spelling it Out is a bunch of essays about AAC by people (mostly with cerebral palsy) who use it.

Contested Words, Contested Science is about facilitated communication (a method, among many, of learning and using AAC), and specifically about the controversy surrounding whether the disabled person is actually the one writing things. I don’t use physical support very often, and even I sometimes have people trying to prove that I don’t write what I write. It would be much harder to prove it if all my typing usually relied on physical assistance, yet that’s exactly what one autistic man in this book sets out to do. In one chapter, he sets out to take and pass the same kind of test that many other FC users have failed, and it takes a lot of practice but he does it. Essential reading for anyone who thinks of this as an outmoded hoax.

Violence and Abuse in the Lives of People with Disabilities is one of those books that I wish were not out of print. I hear it’s going for a second edition at some point, and I hope that happens. It’s written by the father of a man with an intellectual disability, and he’s also worked as staff in institutions. He goes into more detail than I’ve seen anywhere else on the roots and solutions to violence, abuse, murder, institutionalization, segregation, “eugenocide”, and other things that threaten disabled people on a regular basis. He gives lots of references. Unfortunately he dismisses FC as useless and dangerous. But otherwise it’s a really good and important book.

Four Sight addresses life and death issues in the disability world that too many people shy away from because they go against some pretty ingrained taboos. The authors come from various parts of the disability community, parents, professionals, disabled people, and three of them have overlapped at least two of those roles. They discuss the “better dead than disabled” mentality, euthanasia, selective abortion (as a disability issue, not as a simplistic pro-choice/pro-life issue), eugenics, infanticide, institutionalization, and other stuff that makes many people run in horror. And they do it really well.

The mad movement goes by many different names, and so do the people in it. Psychiatric survivor, ex-patient, lunatics’ liberation, mad movement, etc. The common element is people who have been in the psychiatric system, or could easily end up in the psychiatric system, or who are concerned about practices in the psychiatric system, doing everything from standing up for their own rights to calling for a complete replacement (rather than just “reform”) for the system. (Autistic people might want to take note that there are a lot of people like us involved in that movement, although given that movement’s rejection of most labels they view as psychiatric, few would identify as autistic.)

On Our Own tells Judi Chamberlin’s story and then gets into the injustices in the psychiatric system and how it can be changed. I was particularly interested to note a brief comparison, which I’ve seen in a lot of places, between Topeka State Hospital, which everyone knows to be a dump, and Menninger’s, which at the time was nearby and everyone knew to be wonderful. Someone who’d been to both said that Topeka State was physically brutal, but Menninger’s was “more destructive and painful” because it led to “total disintegration of personality and personal autonomy”. (This is something I’ve noticed about institutions as viewed by outsiders vs. insiders too, but few people who’ve never lived in them seem to understand what I mean.) I was also glad to notice that she questions what’s happened with a lot of professionals who have involved themselves in the “anti-psychiatry” movement while maintaining all the power structures that make psychiatry dangerous.

Call Me Crazy is Irit Shimrat’s story, along with interviews of other people in the mad movement, and their (often varying) political views. I was interested to note that Irit Shimrat faces a problem a lot of autistic self-advocates face: Although she was diagnosed with schizophrenia and has at one time or another had all the “symptoms” of it, people still try to tell her that she was misdiagnosed because her viewpoint on the helpfulness of psychiatry runs counter to what most people are told about it.

Beyond Bedlam is a collection of powerful essays and poems by women who’ve been in the psychiatric system. It includes an analysis of how the culture of psychotherapy contributed to making feminism much less effective. (That’s not all it includes, by a long shot, it’s just one of the many interesting things it includes.)

“
Several years ago, another disability activist sent me a packet of photocopied information about disability rights issues. At the end, she had photocopied one page out of I Witness: History and a Person with a Developmental Disability. It was from the end. The author talks about how he often tells the story of the woman he interviews in the book. He says that invariably someone comes up to him and tells him that the woman he’s talking about “can’t be retarded” because she’s wise. And then he proceeds to say exactly how much prejudiced crap that is. So I had to get that book.

I Witness alternates chapters. One chapter will be an interview with “Noreen,” an old woman with a developmental disability who spent many years institutionalized. Then the next chapter will be the author’s reflections on what Noreen is telling him. And they’re pretty stunning reflections sometimes. He talks about how he once authorized the use of a cattle prod for “treatment of self-injury”, something he now can’t see as justified. He also talks about going to a play in which a bunch of developmentally disabled people announce that they’re not sick so they don’t need to be healed. And he talks about how Noreen taught him that community is more than a location.

Learning to Listen is about people, mainly developmentally disabled people, who are considered to have bad behavior (whatever the modern euphemism for that is). The book analyzes the entire social context around this behavior, rather than viewing “bad behavior” as a natural consequence of a diagnosis. I often recommend this book to parents.

I’d recommend all of Dave Hingsburger’s books that I’ve ever read, if I could. I Witness is one of them. But the book of his that I seem to refer to most often is the fairly tiny book First Contact. It’s about how to communicate, rather than just see a mirror of yourself in, other people. Specifically, it’s about the kind of people who get written off the most often of anyone. People known alternately as “low-grade retards”, “profoundly retarded”, “multiply handicapped”, “extremely low-functioning”, and “vegetative”. Hingsburger talks about his first acquaintances with people with these labels, his initial fear, bravado, arrogance, and mistakes in relating to them, and his eventual realization that they are real people, however different from him they are. He encourages people to relate to other people as other people rather than as projections of themselves. When people display “high functioning chauvinism,” intellectual elitism, claim that there’s no place in inclusion or self-advocacy or even life for “Those People,” and so forth, I refer them to this excellent little book. (Cal Montgomery reviewed it here. I’ll admit that when she reviews something, I tend to go out and find a copy. And her review sums up why I like his books so much.)

New Voices is a chronicle of the international DD self-advocacy movement, including interviews with leaders in that movement. This is another movement that autistic people have probably had a lot of involvement in (it’s also another movement that’s often not very fond of “labeling”). And could learn a lot from. (Although I’d hate to see how all the “Autistics are worthwhile because we’re not retarded” folks would come across to people in this movement, who mostly have intellectual disabilities.)

Women with Intellectual Disabilities is written with the first part of each chapter in simple language and the second part in more complicated language in an attempt to make it more accessible to readers who need simplified language. There’s a bit of a problem with the fact that the simple language doesn’t always say the same thing the complicated language does, though. A lot of this book is not from the disabled people’s point of view, it’s studies of disabled people. But other parts include interviews or things written entirely by women with intellectual disabilities. It’s worth the whole book, though, just to read chapter eleven, “Gina’s Story,” an autobiographical monologue by Sonia Teuben, which I can’t really describe but I wish I could see it performed.

This is one review of Pride Against Prejudice, which, as the reviewer says, is a feminist approach to disability, that takes on both feminism’s attitudes towards disabled women, and male-dominated disability rights movements’ views on the experience of disability. The result is a very interesting, detailed political analysis of disability and what happens to disabled people in the world.

The Me In the Mirror is an autobiography of Connie Panzarino, who grows up severely physically disabled, and eventually gets involved in the disability rights movement. It’s interesting both politically and in terms of how she views herself over time. The title of the book stems from the fact that she used to pass time by daydreaming that she could talk to herself in the mirror. Her mirror self could walk and claimed that she could too but just wasn’t trying, an idea that she believed, and felt guilty about, until her fifteenth birthday. Later in the book, when asked to take part in genetic research, she refuses on the grounds that she doesn’t want people like her and her sister eliminated from the planet. She also describes some interesting things about the MDA Telethon, including that they brought her on as a poster child, despite her not having muscular dystrophy, because they didn’t want to “tire out” kids with real muscular dystrophy, and then showed her how to look cute and beg with big eyes.

Too Late to Die Young is a collection of essays by Harriet McBryde Johnson, a disabled lawyer, that take the form of political autobiography and storytelling. She’s also the author of articles I may have linked to before, like The Disability Gulag and Unspeakable Conversations. She takes on a number of similarly weighty issues in the book.

The packaging on my copy of Annie’s Coming Out makes it look like a bad “touching, inspirational story”. It’s really a story about injustice, and fighting injustice, and winning, and not winning. One of the co-authors, Anne McDonald, grew up in an institution with no means of communication understood by non-disabled people until she was 16. The other co-author helped McDonald and a number of other people in the institution to learn to type, some independently and some with assistance, and ended up in big trouble with the institution administration. Anne McDonald was allowed to get out after proving (at long last, after holding out in protest of the indignity of being expected to prove herself) that her typing was genuine, but other people who had been typing along with her were not allowed to type anymore. Some died in the institution.

The Spiral Staircase is one that I got while researching a presentation on institutions. It tells the story of how affected the author was by her years in a convent, and also her involvement with the psychiatric system. (Both the convent and the psychiatric system thought her epilepsy was an emotional problem, which stunned the neurologist who finally diagnosed her.) Her editors had made her write her previous book in an entirely positive light as to what leaving a convent meant in the real world, but since that book was not the truth, she went back and wrote this one.

Lest We Forget is another one I got because Cal Montgomery reviewed it. It’s an audio recording, including music and interviews with inmates of Ohio’s state developmental institutions, families, and professionals. I’ll let Cal’s review mostly speak for me on it because I haven’t quite figured out how to describe it.

I’m starting a new blog — that might turn into a group blogging effort — called Autism Demonized.

Some of my reasons for creating it are detailed in the introduction post. I’ve posted an example of a fairly ancient method of demonizing — in about the most literal sense possible — autistic people and other disabled people.

I hope to eventually catalogue and discuss all kinds of dehumanizing statements that we’re all depressingly used to by now. The statements that kind of make most of us wonder how such tasteless things can be said, like the “Autism is worse than cancer, AIDS, and 9/11 combined” sort of mentality. The main focus will be on autism, but it may sometimes discuss other people who’ve been dehumanized, including other disabled people.

I’m re-watching the Community Imperative conference video, and they talk about a self-advocate named Brian Hall, born in 1939, who had died recently when the conference was being put on. He spent a good chunk of his life in Sonoma Developmental Center. He spent a lot of his time while out fighting places like that. And one of the things he said over and over, was “I want to be considered a man, and I want to be free.”

Well… I want to be considered a woman.

I was talking to a friend last night, and I tried to count, in the offline world, how many people treat me as a human being, and as an adult. When you can count them on your fingers, and remember them by name, that’s not a good sign.

This might surprise people who only know me online, and have always treated me as an adult and a person. I will try to describe what happens in my offline life.

People do not view me as capable of coming up with my own opinions. They assume that my stated opinions are because someone else told me to have them. (In some cases, they do this with me and a friend even if I’m the one who influenced her, not the other way around.) They try to separate me, sometimes forcibly, from people they assume are influencing me.

I have, as an adult, been approached with the “We have a toy in the car, would you like to see it?” routine generally reserved for children. The people doing this routine also tried to tell me that they’d “be my friends”. (While touching me and talking about sex.)

Most people speak to me in the same voice that even children shouldn’t be subjected to (but they often are).

When I read descriptions of what makes for mature, responsible adults, they often make it clear that it is impossible for me to fulfill the criteria. Only children, sometimes only infants, are said to need, or deserve, certain kinds of assistance I require, and adults are expected to know how to do things I probably am not going to learn in the near future.

My abilities, such as self-care and speech abilities, are compared to an age-based norm and I’m said to be at such-and-such a “developmental level” in each area. Areas I am not good at compared to the average person are regarded as “delayed” development, and equivalent to children the age at which the average child’s abilities superficially resemble mine in whatever way is used to test that area. I’m treated accordingly. (Aside from that, one of my re-evaluations for in-home support services describes me as presenting as “unusual, odd, bizarre, childlike”. And I guarantee you they didn’t mean “childlike sense of wonder”.)

I just got called for a phone survey two nights ago. I tried to answer in my extremely limited speech, was first asked if there was an adult in the house, then after they figured out I was an adult, they tried to find “someone else in the house” who actually understood what they were talking about, even though I understood perfectly well and there was nobody else in the house. Then they hung up on me when the two noises I was able to make weren’t sufficient to answer an either/or question. (This kind of thing plays out similarly off the phone, too.) I called them back on a relay service to explain everything to them, and they called back today but immediately hung up on me.

When I was 24 years old, I told my doctor that I might want to have children at some point in the fairly distant future, and asked her for technical information about it. Instead of giving me information, she spent the rest of the visit trying to impress upon me the fact that children are a Big Responsibility and that, in her opinion, I shouldn’t have them, ever. She assumed that I had no good reasons for considering children and that I was incapable of understanding the responsibilities involved. (One thing I am curious about is how many young mothers truly understand the responsibilities involved until they are home with their baby — and how many young mothers get such an impassioned lecture from their doctor about not understanding, unless they’re also underage.)

Very few people realize I’m as sexual as most other women my age, and when they do realize it, many would rather I weren’t, or would at least rather I not have a partner. If they find out I’m gay, there’s a higher than normal chance that they think I’m really actually straight but either “immature” or “talked into it”, or that I shouldn’t talk about it. (And all of the above can be seen as threatening or dangerous, even though it’s not. It would also be easy to prevent me from acting on it if people wanted.)

People try to make decisions for me, and if I don’t agree with their decisions, they assume I don’t have a good reason for disagreeing.

I’ve been told that people with the particular non-academic difficulties I have, are not capable of being responsible adults, and therefore simply do not belong in adult academic environments.

When I am in a situation where I need to type something and have it read by someone else, that other person quite often leaves out parts they don’t feel like saying, even though they would be furious if someone censored them in the same way.

I can’t leave the grounds of my apartment complex, alone, without someone deciding I’m lost and need protection. I have not been able to do this since I was a teenager. People do not respond to my assurances, when I can make them, that I am just fine and don’t need any help. I have even been detained against my will for this.

I’ve had complex, well-thought-out views dismissed, and then I get treated as needing to have things explained to me veeerrrryy sllloooowwwwllllyyyy. For instance, my critiques of the standard measures of cognitive skills in autistic people (critiques that are even backed up by research), have caused people to gently pat me on the arm and explain to me very slowly and carefully that some people are smarter than others and not everyone learns on the same level.

I’m frequently told that I have no right to expect what other adults like me in everything but disability expect all the time, even that I have a massive sense of entitlement for, for instance, wanting to eat regularly, or wanting people to listen to what I have to say as much as they listen to anyone else, even though it takes me longer to say it.

People often directly contradict things I say about myself that nobody else could know, and they are listened to, not me. (For instance, if someone asks how I’m doing, and I say I’m in a bad mood, someone else might say I’m actually doing great. The other person is believed over me.)

I’ve also been put on the usual pedestal of childlike innocence, and seen the nasty underside of that pedestal.

I hear things often about how much more difficult it is to go places if I’m there, generally in the same tone as someone who feels some obligation to drag their kid sister along places but doesn’t really want to. I’m expected to listen to this passively and without comment, or I’m making trouble.

I recently sat in an office asking questions about what the rules were there, and being told “The rules are to do what we tell you,” right before watching another disabled woman try to say “hi” to someone and being told that saying “hi” was inappropriate social behavior. We are expected to do this unquestioningly, and many of us do. Those who do not are treated like naughty children.

I am often the last person to be consulted when major decisions are made about how I am going to spend my life, and often the “consultation” basically consists of telling me what to do regardless of my opinion on the matter.

My primary staff person, who is on a personal level self-admittedly uncomfortable with the whole concept of power imbalances and panics at the mere mention of politics, tries to impose these views on me and generally gets away with it, since arguing can jeopardize my services. This usually takes the form of, even after seeing something blatantly (as in, the vast majority of people would recognize it as such) wrong going on in terms of prejudice or power, explaining it away in terms of individual circumstances that have nothing at all to do, ever, with prejudice or power, and implying that I have no real reason to be upset by it. Since she’s good at her job, and since contradicting her agitates her so much that large amounts of time are lost, I mostly have to sit there and take whatever convoluted excuses for other people’s behavior that she throws at me. Meanwhile she denies the very notion that she has any power in my life, because she doesn’t want power or privilege, therefore she doesn’t have it, apparently (and ignoring power is a good recipe for abusing power, something that I can’t get across to her because she doesn’t view herself as the sort to abuse power, therefore she doesn’t, or something).

If it were not this situation with the above staff, it would almost certainly be something equally problematic or worse, given the staff I’ve seen in the developmental service system. Interestingly enough, my neighbor who is classified as physically disabled for the purpose of funding (you can be one or the other here, not both, and both she and I are technically both, but we are in different systems), rarely has to contend with this level of condescencion or people trying to run her life right down to her thoughts, even though she needs staff to do similar tasks to the ones mine do. Not that she doesn’t encounter it, she just encounters it far less than I do.

I’m often given prerequisites for being considered a woman, that women who are by default considered women (which varies depending on situation), are not generally given. They can violate those prerequisites right and left, and often do, but if I violate them it justifies being treated like a child or worse. I am often required to prove I am an adult by more than showing people my ID.

There is a good chance that, if I wanted to smoke or drink, people would try very hard to prevent me from doing so, not in terms of talking me out of it but in terms of the same ways children are prevented from doing so. I don’t want to smoke or drink, but if I did, being overage would not necessarily be enough.

Similarly, there are many irresponsible choices that adults are generally allowed to make and deal with the consequences, that I have not been allowed to make at all, or when I do make them, my status as an adult is questioned.

(Example from outside my life, on that one: I remember watching a movie once, based on real events, where a married couple with intellectual disabilities had a fight, and the husband stormed off down the street while the wife yelled at him that he was stupid. The wife’s social worker ordered her to get inside the house, and she told her social worker she was not a child. The social worker said, in classic patronizing social worker tone, “You act like an adult and you get treated like an adult.” The thing is, lots of married couples have fights of the exact same kind and are not sternly told to “act like adults” before they get to stop contending with social workers ordering them to go inside. And the scene in the movie was very familiar to me from real life.)

I’m expected to experience being treated like a child as compassion and caring, when most adults (and many children) would find being treated the same way to be condescending and patronizing. If I don’t like it, it becomes my problem, somehow.

The list could go on for pages. I again know this could all come as a shock to people who only know me online. It does often come as a shock, when people who know me online get to watch how I’m treated offline. It seems that disabled people in general, and developmentally disabled people in particular, aren’t “full adults” by a lot of people’s standards. The result of all this, at any rate, is that I sometimes even find myself wondering if I am really an adult, because I rarely see any models of adulthood that include people like me, and I so rarely am treated like an adult. Of course, I am, but for anyone to have to contend with this level of ridiculousness on a regular basis seems… well… ridiculous. But it’s pretty much business as usual for me, and for others like me, so much that we often forget it’s happening and forget we could be treated any differently.

I have a friend that I left in California.

I first met him at Autreat. He was sitting there being sort of bypassed in conversations, looking blatantly autistic and blatantly institutional and blatantly reminiscent of me at my first Autreat. I asked my staff to help me talk to him (having someone around to start conversations for me can be useful). He told me that my staff and I were the first people there to make sense to him. He was living in an institution (he wasn’t sure if board and care homes counted, but I could tell by his demeanor that this one did), and was having trouble getting the services he needed to get out. There was some kind of complication. His mother.

After we got home, I got to know him more, in visits. A mutual friend would drive him to my house, and we’d hang out, or talk about things, or watch videos, or go out to eat. It was nice to talk to someone I could understand, not just on the autistic level but on the level of institution experience, which can be as much of a divide between people as autism can sometimes. From what he said, it was nice to talk to me, too, for similar reasons. He also said he viewed our visits as one of the few times he was free. He feared that this freedom would stop entirely soon. He was right.

When I left, I had my staff promise to try to help him out. But then things took an unprecedented turn, and she acquired a health problem serious enough that she can’t work, let alone go all the way to San Francisco and help my friend. She’s supposed to take it easy at home until they can figure out treatment options.

My friend also attended a support group for autistic people. His mother no longer allows him to attend. She believes that the other group members are too high-functioning and have nothing in common with him. My brother, who attends the group, told me about this.

The last I heard from our mutual friend, he only hears from my friend when he can sneak phone calls from his mother’s apartment. She hangs up the phone if she catches him calling his friends. He is trapped, and from here I feel completely impotent.

His mother believes she is doing what is best for him. She believes that he doesn’t know enough to run his own life. She has not seen firsthand people like me, who have problems in living at least as much as he does, but have our own places with people who come in or live there to help us. She has not seen how long-term institutionalization causes loss of abilities which further justifies the institutionalization, she has not seen people who once lived in institutions learning slowly to make choices and be less passive. She is probably also afraid he will abandon her if she doesn’t keep him trapped. I’m not sure she realizes that she is suffocating him, forcing him to make an impossible choice between his love for her and his desire for freedom, and then forcing him to not act on whatever choice he makes. Declaring him incapable of making or understanding choices.

He has lived in a lot of different countries.

He told me that he learned from this, that there’s never just one way to do something.

He tried to tell his social worker that, that he’d lived in a lot of different countries. (And now she was constraining him to one way of doing things. And treating him like he had no knowledge of the world.) She, he says, didn’t understand.

I told him that I wanted to visit other countries sometime. He told me that I would need to be very careful and take someone with me at all times. And the system treats him as if he’s stupid.

He liked learning about freedom, but it frustrated him. I knew it frustrated him and I was afraid to say too much, because I know that thinking about freedom, while in captivity, can be life-threatening. I told him that. He was startled and asked how I knew. I’d been locked up, too, and I know what that kind of fear is like, and how it’s necessary to mold yourself to fit confinement. I was really careful, knowing how submissive institutions can make you, to try not to lead him into saying something just to agree with me. And I told him this.

He understands more than he’s ever given credit for.

The Regional Center near where he lived kept rejecting him. It’s mainly an old category-bias: He’s in the psych system now. Despite three conditions diagnosed at various times that qualify as developmental disabilities, despite immense difficulties with daily living, community navigation, socializing, communication, and learning… they rejected him. Partly because he’s in the psych system and therefore Not Their Problem. Partly for other reasons. (Similarly, psychiatric institutions in California will often not take Regional Center clients. Which can be advantageous if you don’t want to be stuck in one.)

His mother is now keeping him in confinement “for his own good” that is stifling him. I’m afraid for him. I know that he wants to both love his mother and be free, and I don’t think she is going to allow that. His mother is getting old, and she is convinced she is the only person in the world who understands him or knows what’s good for him. She is also convinced that everyone else in the world, including everyone else he likes, is a danger to him and needs to be kept away from him. He is nearing middle age, but because he is disabled, she can get away with treating him as an unruly child, and he both loves and fears her.

She is convinced, I think, that if the situation changes, and he gets into trouble, and she dies, then he will be helpless or worse. I have seen this happen before with disabled people his age, and parents his mother’s age. Somehow it always leads to some of the worst restrictions possible — in one case an autistic woman locked in a single bare room of her own home without even toilet paper to keep her entertained, while staff got the rest of the house — and the least willingness to challenge the system even when it needed challenging.

I am afraid that her actions based on this fear are going to damage his life more than the events she fears, could. I am also afraid that her actions are going to tear him apart, or deaden him, emotionally, and he will have no friends to talk to about it because she will have kept us all away. I am afraid of what he said when we went out sometimes: “I’m afraid this isn’t real. I’m afraid this is going to be the best time of my life, and then it will be gone, and everything will go downhill from there.”

I’m also afraid because I know that if my family had not cooperated with my desire to live on my own, I could be exactly where he is now.

I don’t know what to do, or whether there is anything I can do. Praying for him, which is all I have come up with, sometimes seems like a lousy substitute for doing something.

He has been eager to have his story told to a wide audience, and at one point I tried to get an interview lined up for him with a disability rights journalist, but one thing and another made that difficult. I have not named him, although people who know him will recognize who I’m talking about, because I have not asked permission, and now may not be able to.

So I am telling as much of his story, here, as I know how. I hope one day he’ll read it.

One thing he always had a problem with in the autistic community, and it’s a problem I have run into and noticed myself, was “Where is all the practical help? These are great ideas about us not being defective and all, but what will anyone do for me right now?” I believe that these ideas will ultimately destroy the position that he’s being put in, but that’s in the long run.

But in the short run.

In the short run, there are lots of people trapped, like he is. In or barely on the edge of the disability gulag. And I’m not always sure that people who have not lived in that gulag, have noticed that they exist, or understood that every single one of them is a person. Many want and need practical help. Now, not when the ideals of our community finally seep into the real world.

Although… speaking of the ideals of our community… many in our community don’t see a problem with various parts of the gulag and assume everyone is happy there, or at least should be, because it’s our lot in life, isn’t it, or something. Many mistake passivity, terror, the lowered expectations required to survive in those places, the carving out of a life for oneself even in hell… they mistake those things for these being great places. I talked to a former prison inmate about this, and she said something similar happens, with free people not understanding at all what happens inside them, not seeing even what’s in plain sight. I agree, and don’t think most free people understand the incarcerated mind at all, and the extent and nature of what is ugly and despicable and disgusting and horrible about incarceration of any kind.

Many in our community have been taught, as everyone is, that certain kinds of people, well, that’s what you do for them, that’s how they get assistance, the only way to get out is to not be that kind of person. I’m “that kind of person,” and so are many people I have known who live both inside and outside of institutions of various sorts. One woman in the Community Imperative conference I attended in Oakland, said, that over the years, in her work in California, she has realized there’s not such a thing as a kind of person who needs to be institutionalized, and that the population of people living inside and outside of state developmental institutions is identical in all but freedom.

But right now it’s not those ideas that are running through my head the strongest.

I miss my friend. I want him to be able to come out here and visit me, like we’d talked about. But most of all I want him to have the freedom he wants, I want him to be able to live somewhere that doesn’t force him into that awful incarcerated mindset, I want him to be free long enough to get to be comfortable with himself and to have the strange privilege I do of fearing losing my freedom again.

I co-presented at that talk at Autreat, the same one he attended, the same one Jane describes here, because so much of the autistic community is so damn ignorant or complacent about this kind of life, the kind of life I’ve led, the kind of life he leads, the kind of life that so many other people are leading right now in this moment. We’re obviously under-represented out here because we’re more likely to not have learned to use computers, we’re more likely to not have access to computers, we’re more likely to in various ways not be able to interact with the autistic communities that have formed. And then when we do interact, we often find that, as Laura said:

Well, having this experience does make me pretty much inevitably different. I’m not the same as other people. And I’m aware in many ways, whenever I deal with people, especially politically, I am aware that there is a whole… there is an experience that I have had that they have not had. And it’s usually very obvious to me that there’s how it is that they have not… it’s just, I don’t know how to describe it, I really don’t. I wish I had a better way of describing it. But I can tell that I have had an experience that is not theirs, that my… oh gee.

There’s, I almost want to call it a level of naïveté about what can be, in people who have not been through this. A kind of, I’m trying to describe something that I sort of know it when I see it but I don’t know… I guess many people don’t live with… I am trying to find words for concepts that… it’s a level of naïveté. A failure to understand how bad it is or can be. A failure to understand how the issues are really that of life and death, a failure to understand the importance of… yes, a failure to understand. There’s a level of unseriousness there, a level of too much faith in the system as it is now, too much misplaced faith in it. And too much, I would almost call it eagerness to try to prove or establish that they are not like these people almost. Like that these people are not them, that they’re better than people who’ve been through that and in any case those people deserve it and in any case it was good for them, and in any case, you know, and if it wasn’t good for them it was not a systemic issue. It was just, that one instance. That exception.

So, many of us even with the access to these groups, end up sticking to the fringes, or not talking about it, especially if we view our experiences there as bad. We run into a lot of social norms that exclude us unintentionally, in similar ways to how non-autistic people can inadvertently exclude autistic people. And nobody likes being told they’re being exclusionary, so just as non-autistic people can get angry at autistic people asking to be included, and dismiss what we say, so can autistic people dismiss the experiences and personalities and exclusion of institution survivors. Thus, it’s sometimes easier to be passive and silent.

But we’re here. The lucky ones, like me, have gotten away for the most part — whether by becoming the sort of person nobody wants to lock up (as some people I know have done), or by finding places that don’t lock people like us up (as I have done). The unlucky ones still live it in various forms. And my friend is at the moment not one of the lucky ones. I just don’t know what to do beyond tell this much of his story, the parts I could remember just now. I want to be like Ron Weasley and show up at his window in a flying car, but that’s how things work in books, and real life is more complicated.

Anyone who wonders why I talk about this stuff all the time? Stop wondering. It’s not some kind of twisted hatred or bitterness that some people make it out to be, it’s love. I can’t explain it clearer than that.

Tags: institutions autism disability autismcommunities autreat friends regionalcenter services disabilitygulag harrietmcbrydejohnson lauratisoncik janemeyerding

Autistic Conjecture of the Day made a post called It Bares Repeating quoting an article which reads, in part:

Some people with ASD are very bright intellectually, she said. They can be socially isolated but able to take care of themselves. It can be hard for them to keep jobs and friendships.

Others with ASD can have mental retardation. They might not be able to speak, and have difficulty with handling their daily living.

I suppose my reaction to these kinds of things bears repeating too: Not quite.

I still haven’t figured out quite what an intellect is. But I am pretty sure that the assorted ways of thinking that non-autistic people view as intellect, in me, range unpredictably from non-existent to fairly bright and everywhere in between. They’re simply not static traits, or anywhere even close, and judging me by any “level” I appear to be at at any given time, is not going to be accurate at all.

In addition to this, even if I’m at my “brightest”, I can’t speak, and I have lots of difficulty handling my daily living. For that matter, even many autistic people with very good speech and consistently high tested IQs can have lots of difficulty handling their daily living, and many autistic people without much speech and with lower tested IQs can do a lot of daily living tasks.

I’ve often told service providers that trying to equate autistic people’s “functioning” with IQ or related concepts, is like trying to do the same thing with cerebral palsy. Autism and cerebral palsy are not defined or measured by IQ. IQ is not even part of the definition. A person can be classified as severely disabled, with either autism or cerebral palsy, and still be classified as highly intelligent.

By people who do all these classifications this way, of course. Ugh. This is not my own language I am speaking. It gets tiring to add disclaimers saying “This is shorthand. This is bad shorthand from a model of disability I don’t even believe in. Please do not take my words as meaning that I believe a lot of the assumptions that usually go with these words. I don’t know better words.”

But why is this stuff important?

Services for autistic people in many areas have IQ cutoffs because of the mistaken belief that “functioning level” (a problematic concept) and “intellectual level” (another problematic concept) are identical. Even many areas without IQ cutoffs still have unofficial ones, they’re just not likely to okay services to someone who looks “high functioning” to them.

Truly, my father and I have been through Hell and back in trying to fight for my rights. And the fight just never seems to totally end, especially in light of the fact that the State of Colorado has refused to provide me with services for the developmentally disabled. They have declared that I am NOT developmentally disabled because their “experts” found my intelligence levels to be far too high for their standards on tests that I took independently just as recently as November 2000!!! For pity’s sake, I was classified as developmentally disabled in New York – did moving 2000 miles somehow magically change that? So what if my IQ is too high – what about my many deficits and needs for total assistance in the areas of daily living and survival skills as a result of several disabling conditions which are classified as developmental disabilities under federal law???? It seems that one needs to be retarded in this state just to be able to get on waiting lists for necessary services, or is perhaps the system retarded that sets up IQ or lack of it as a measure of developmental disability and need? I have to wonder at the motives of people who challenge either my intelligence or my disabilities… exactly what do they want me to be???? I have already jumped through countless fiery hoops to get to where I am today. I am honestly sick and tired of being treated as a human guinea pig or lab rat … it is a clear violation of my human rights and one that MUST stop NOW!!!! What exactly will I be asked to prove next – that I am actually HUMAN????!!!! YEESH!!!!

That’s a quote from To Have a Voice is to Have a Choice by Sharisa Joy Kochmeister. She has autism, cerebral palsy, and epilepsy, and is regarded by most people as low-functioning. Before learning to type, her IQ was measured as 10. She learned to type (which included some grueling tests of whether it was really her or not) . Her IQ magically became 142, and she magically became viewed as too high-functioning for services, even though, besides typing, things remained very similar in terms of ability.

Nothing will convince her state that she is disabled enough to need services, because these attitudes are perpetuated.

The flipside, of course, is that many autistic people — and people in general — who have a lot of trouble with daily living skills and speech, are thought of as being that way because we don’t really have much if anything inside us at all, and certainly would never be capable of intellectual discussions such as the one I am engaging in right now. (If you ever think of someone as essentially empty inside, try being considered empty for awhile and see how you feel.)

Sharisa Kochmeister and I are not the only two people in the world who encounter these damaging assumptions on a regular basis, from both sides, either underestimated or overestimated but rarely seen for who we are. In fact, most autistic people encounter them. Which is why defining the two “types” of autistic people in that way is quite irresponsible on the part of whoever wrote that article originally. The world of autistic people simply does not work in such a neat and tidy (for non-autistic people, who don’t have to live in the mess that this “tidiness” creates) way.

This, also, bears repeating.

Tags: autism functioninglabels hierarchies services sharisakochmeister nonspeech iq fc

I am a mediocre hammered dulcimer player. I’m not horrible, but I’m not that great either. One time, I was in downtown Santa Cruz, and I saw Michael Masley playing. The hammered dulcimer is a stringed instrument that’s normally played by striking the strings with two hammers, one in each hand. Michael Masley plays it by strapping hammers to all of his fingers, including ones that can strike, bow, or pluck depending on how you use them. I stopped to gawk. Eventually, I told him, “I play. But not like that.” He stopped playing and let me look at his hammers.

I wish I could play like Michael Masley. I often imagine myself playing like Michael Masley. But I’m not Michael Masley, or anywhere in his league in terms of talent, and I know that even with practice I’m unlikely to be able to play well with ten hammers instead of two.

This doesn’t bother me too much. Nor does it make me different from all the people who wish they were like Michael Jordan and know they’re never going to do more than shoot hoops in the driveway or watch basketball on TV or imagine basketball games. Most people in the world have things they wish they could do and couldn’t, even with lots of training and practice, do. Most people in the world dream in this way, and most know that it’s a dream, and know how to incorporate bits of it into their lives and go on with their lives without being miserable because they don’t match their dream.

I’ve noticed something, though.

Most non-disabled people understand how I feel about Michael Masley. They don’t feel sorry for me, they don’t expect me to make myself miserable trying to be him, or anything like that. They understand that I enjoy playing, even if I can’t do it the way he does. And they would also understand if I had absolutely zero interest in his kind of expertise, or in the hammered dulcimer at all. I know very few people who even play it or want to play it. And some people even regard it, or at least some of the kinds of music I play on it, as sort of embarrassing. They regard my attitude towards Michael Masley’s talent, as well as other people’s total indifference to that kind of talent, or that kind of instrument even, as mature and responsible.

My biggest forms of recreation used to be long-distance walking, riding my bike, and climbing things, especially but not limited to trees. I had excellent endurance and the kind of ability to climb and balance on things that some autistic people are famous for. I enjoyed sitting up in trees. I enjoyed walking on fences. I enjoyed exploring and mapping things out as far as I could go.

These days, I can’t walk even as far as the average person can. I’ve lost many of the motor skills that gave me the not-even-think-about-it climbing ability that I used to have. In fact, a lot of the time I can’t move at all. And riding bikes is outright dangerous.

This is what people seem to feel sorry for me about. But I don’t regard it as any different than Michael Masley. Yeah, it’d be nice to do things that used to be my main source of entertainment, but I can’t, and I don’t feel too bad about not being able to.

I said that they call my attitude to Michael Masley, when they have any reason to call it anything at all, mature and responsible. And they don’t even have occasion to call it that, really, because it’s expected that most people will at some point reach that level of maturity and responsibility.

But what do they call my attitude towards long walks and bike rides and climbing stuff?

They call it giving up.

They call it irresponsible.

They call it wanting to be an invalid.

They call it throwing my life away.

They encourage me to make my life utterly miserable until I can do these things, rather than doing the things I can do, learning the things I can learn, and so forth. I’m supposed to, instead of living my life, sit around waiting and mourning something that I don’t really see a need to mourn in the first place. If I did that about not being Michael Masley, I’m sure someone would tell me I’m being ridiculous. But because I’m disabled, not doing that is regarded as ridiculous. It’s expected that I should yearn to be “normal” above all else, and perhaps yearn to die if I can’t be that. That this attitude would be truly immature and irresponsible seems lost on most non-disabled people I encounter, and even some disabled ones.

I may fantasize about things like climbing trees. But then there are some other things I don’t fantasize about at all.

I don’t have any particular desire to be able to speak with my mouth.

I don’t have any particular desire to walk. And this despite the fact that I can and do walk some of the time. And even the rest of the time, when I can’t walk, I don’t miss it.

The more I learn about what biased cognitive scientists regard as “higher-order” thought, the more I’m actually glad that research is showing that it’s “optional” for me at best. (Not that there’s anything wrong with the fact that some people are designed to use it constantly. But I don’t want to be them any more than they seem to want to be me.)

I would fight anyone who tried to make me non-autistic.

People call all this, downright sick. They imagine that what ranges from lack of particular desire to do something, to outright hope that I’ll never do it, must have some deep and unhealthy subconscious motivation. I somehow never really see people who are indifferent or averse to learning hammered dulcimer skills (that they may or may not be able to learn) being treated in this way. But I’ve gotten hate mail and even death threats for my views on these things.

I don’t believe, by the way, that things just are how they’re supposed to be. That if I can’t get my wheelchair into a shop, I should just accept it. That if I’m treated with disrespect, I should just accept it. That if I am (or anyone else is for that matter) viewed as non-communicative rather than just non-speaking, I should just accept it. That if there’s something about myself that I can and should change, I should just accept it. That if there’s something I want to do, and is within my reach, but will take a lot of struggle, but is important enough that I really have some considered desire to do it, that I should just give up on it. And I’m not saying that being autistic (or any of the other things I am) is merely a lifestyle choice.

But neither should I accept being told in so many ways that I should be living my entire life as an interminable, nasty, miserable, no-holds-barred fight against my own body and brain. I should not accept that people view that kind of struggle as heroic, because it’s not. It’s not only self-destructive, it’s also destructive towards other people who are expected to take on that level of self-destruction as an inspirational example.

Someone wrote to me recently, imagining that much of my life is stolen or wasted or something. And I thought about how differently I viewed my life than she did. I didn’t even know how to put it into words. I still don’t.

I’m just continually amazed that people think happiness depends on certain particular abilities, and that those of us without them not only have no merit in the way we function in our own way, but should strive miserably and endlessly to be this one kind of person that we’re not. Many of the people who believe this might think twice if they had to live in a world controlled by people who thought that playing the hammered dulcimer was the most important skill in the world, that everyone should make themselves utterly miserable striving for.

Tags: music disability michaelmasley dulcimer nonspeech training hierarchies

I’ve seen a lot of people lately talking about “biomed versus neurodiversity”, and speaking of those of us who are, these days, referred to as neurodiversity advocates, as if we only popped up to deal with this whole “biomed” thing. I’d like to give this some historical context for people who are unaware of this.

Autistic self-advocates have been around for a long time. Many of us were diagnosed with autism in the days when in our countries autism was still seen as caused by parenting and requiring things like psychotherapy. (Many countries, France most notably, still believe this.) We have, collectively, lived through a number of supposed causes for autism, and a number of supposed miracle cures.

Some of those miracle cures, or treatments, were: Psychotherapy, LSD, sensory integration therapy, Doman-Delacato patterning, neuroleptic drugs, Lovaas-style ABA, other kinds of ABA, holding therapy, Son-Rise/Option, Relationship Development Intervention, megadoses of vitamins, GFCF and assorted other restrictive diets, candida diets and antifungals, Secretin, DAN! doctors, and way, way more than this.

Many of us can remember when, relatively recently in fact, it was the diseases in the vaccines that were blamed for autism, not thimerosol (and often it was vaccines without thimerosol that were blamed). And many of us can remember many, many other supposed causes for autism. From the original and traditional demon/fairy-changeling myth to the eerily similar thimerosol-stole-my-child myth, there have been a lot of things in between. All of them have had fervent believers.

During all this, various autistic people have been saying that being autistic is a valid neurological configuration. That one never goes away, but it never seems to be fashionable whenever the next batch of kids is diagnosed and the next batch of parents, knowing very little about autism, latch onto the first thing that makes it sound as if they can “get their children back” if only they believe hard enough and do enough treatments early enough (and give enough money to enough rich doctors…).

The people calling themselves “biomed” are only the latest, and they are not likely to be the last. The next generation of autistic children after this one will probably be facing an entirely different supposed cause, and subjected to an entirely different set of supposed cures. Many of those children will grow up, of course, to write about how they didn’t like that childhood spent with everyone trying to fix them (many, many disabled people say this, in fact, but non-disabled people never seem to get the message), and they’ll have to contend with the parents of the next generation telling them they can’t possibly be autistic, that they’re either too autistic to understand or not autistic enough to understand, that the real cause and cure is…….. [fill in the blank]

I haven’t been around as long as some other people, but even the latest crop of “biomed” stuff seems new to me, and I can remember older and discarded theories espoused with just as much fervor. People who’ve been around longer than me remember even more. The people who are just starting out right now, will remember the current “biomed” stuff when the next craze in autism comes along.

Because it will come along.

And we’ll still be here. And we’ll still be autistic. And the children who are children now will grow up into various varieties of autistic adults, and many of those adults will say the same sort of thing that the neurodiversity people are saying now.

The point here in my long-winded description is that no, the idea of neurodiversity (which is not unique to autism, but seems to constantly be placed in discussions of autism) did not start with combatting the “biomed” thing, nor will it end when the current “biomed” thing fades out of popularity. Any more than the neurodiversity movement was invented by Michelle Dawson to oppose ABA (and that notion wasn’t even that long ago!). Or any other thing like that. It’s more than opposition to any one kind of “cure”, it’s a set of values that underlie ideas that often lead people to oppose popular “cures” of the day.

I sent the following to APANA with permission to publish it (it may take awhile to get onto their site):

I am writing to let you know my experiences with Promethazine (Phenergan, etc). I think this is very relevant to the effects of neuroleptics on autistics, because this was a completely non-psychiatric, non-behavioral, low-dose use of a neuroleptic which is far less potent than chlorpromazine (Thorazine, Largactil), which is already a very low-potency neuroleptic.

I have a chronic migraine which can, when at the worst stages, result in severe nausea and vomiting. The first time I took Promethazine was after going to a walk-in clinic with a four-day migraine several years ago. They recommended Compazine, which I knew to be a neuroleptic. I explained my sensitivity to neuroleptic drugs, and the fact that I had had life-threatening reactions to Prolixin (fluphenazine) and Haldol (haloperidol), and they told me that there was an antihistamine, Phenergan, which was not a neuroleptic and which could be used to treat my nausea.

I went home and took it, and it did treat my nausea. That night, and the next several days, my arms and legs hurt and I found it very difficult to initiate movement. I chalked this up to exhaustion until I was well enough to read the bottle. It said “Promethazine” (the generic rather than trade name) and the “-azine” made me think to look it up and confirm that it was indeed a neuroleptic, and the pharmacist’s notes (which I had been in too much pain to read) carried the standard warning against Neuroleptic Malignant Syndrome.

Past that point, I made do with various other remedies until this last fall. I again had a severe migraine, and the severity was not going away this time. I vomited for several hours continuously at one point and was taken to the emergency room by my roommate. There, I received treatment for dehydration, and after a bunch of consulting with various people, I decided that Phenergan was worth the risk. But I did let them know that there was a risk.

They put some Phenergan in with the IV fluids I was receiving. Pretty soon, I was hallucinating. I saw handwriting all over my hands and my roommate’s hands. And I saw all sorts of other strange things. But I was too out of it to really do more than notice it and then fall asleep. When I woke up, I could not fully open my eyes and needed all the physical assistance the nurse could give me just to get back into my wheelchair and go home.

I had a similar problem with vomiting the next week, and returned to the emergency room. I was again given Phenergan, as well as, this time, two Phenergan suppositories to take home. My doctor also wrote me a prescription for Phenergan. When I used Phenergan, which was as rarely as possible, I continued to have problems with stiffness, increased difficulty initiating movement, and hallucinations.

Regarding the hallucinations: I saw my wheelchair moving back and forth with nothing in it, and objects turned into other objects. The hallucinations reminded me of the hallucinations I had had on Seroquel, which were, like Phenergan, always at night, and my roommate speculated that the phenomenon of “sundowning” (being lucid in the day and hallucinating and disoriented at night, something I’d never heard of but she said matched my descriptions) among nursing home residents might sometimes be related to the fact that they are often given these same drugs. I do not hallucinate without neuroleptics in my system, and find it bizarre that they are considered to treat hallucinations.

The cognitive effects were highly unpleasant. It was like being sectioned off into little pieces. It was not the same as shutdown, because the things that shut down did not shut down in the same pattern. I could feel as if a skill should be present, based on my knowledge of how my mind works, attempt to use it, not grasp that it wasn’t present, and eventually drive myself into a screaming fit trying to do something like pick up a piece of paper. Normally, when I have difficulty with those things, even when the outward appearance looks similar, I have more of a sense of what hole I’m going to bump into, it’s not like falling into random holes.

My emotions were split into pieces and very distant from me, my thoughts were split into pieces and very distant from me, and I was unable to connect to anything enough to act on it. I spent a lot of time lying on my back in abject misery but looking calm and relaxed. The emotions and thoughts were still there, but unreachable and shattered from my vantage point. I could be angry, or terrified, or miserable, but none of it connected with anything, it was just floating out somewhere in space way far away from me behind an impenetrable wall. I know that these can sound like shutdown and other things like that, when I use these words, but there’s a qualitative difference that makes this much, much worse, that I don’t know how to put into words. Cal Montgomery once referred to it as an “agitated stupor” and I know what she means. I could be more incapacitated than this in some ways just naturally, but it wouldn’t be like this, it would be very unnatural, more like having an atom bomb dropped into your brain than having your brain use its own methods of shutting off. I think it’s important to note that it’s not just a lack of capacity that’s the problem with neuroleptics, it’s the fact that they have a kind of unnatural brutality about how they cause it.

It’s now January of 2006, which is about three or four months since I was first recently given Phenergan. I have used it as little as possible. But this past week was my “hell week” (the time of each month when my migraine pain skyrockets) and I vomited all my food and a good portion of my water for four days in a row before deciding to take Phenergan. I took it at exactly the recommended dosage and timing (25 milligrams every 6 hours) and was able to keep all but a little of my food down.

On the third dose, though, something happened. My leg and arm muscles started hurting a lot. Then my lips went numb, then my tongue went numb. Then my throat did something I hadn’t experienced in ten years: it started trying to shut of its own accord. When I’d had severe dystonic reactions to high-potency neuroleptic drugs in the past (that were sometimes also combined with signs of anaphylaxis, so I think I’m both sensitive movement-wise and allergy-wise to this class of drugs) they’d given me Cogentin (benztropine), so I was expecting to have to go to the emergency room and get that. They told me that Benadryl (diphenhydramine) would work just as well, though, so I took that and the reaction stopped.

Acute dystonic reactions can occur in all neuroleptic drugs, both typical and atypical. They can involve the airway, as they seem to usually do with me, and at that point they are life-threatening. I had thought that, because this was an extremely low-potency drug to begin with, and because the nausea dosages of neuroleptics are much lower than the psychiatric dosages, this was about the safest I could be with a neuroleptic. And even this neuroleptic is not safe for me.

In any autistic person who already has significant problems with movement, I suspect that these drugs have more of a potential to cause the adverse motor reactions, and with those reactions can come this one, which to me is the scariest because it impairs breathing and can kill a person. I had previously thought that only the high-potency ones had the potential to do this to me, but it turns out that the low-potency ones, indeed the super-low-potency ones, do too. It’s important that people know about this, and also that there are a number of neuroleptics that are not listed as neuroleptics in some medical references, that are still dangerous.

Put bluntly, autistic people are at higher than usual risk from these drugs, people with movement “disorders” including catatonia are at higher risk than usual from these drugs, no amount of “super-low dosages” makes them safe for a lot of us. I don’t usually just give out straight medical information about myself like this, but this experience scared the crap out of me. I’d taken every precaution and it still wasn’t enough.

I want to say, “What if I’d been some kid prescribed Risperdal or Prolixin or Thorazine or something?” But I was that kid. And my throat closed then too and it was a good thing someone came by and put a stop to it. But what if I’d been some kid prescribed them and this happened in the middle of the night when nobody was around to notice, or the people who wanted me dead had their way and nobody did notice? Lethal reactions to neuroleptics are documentedly higher in people diagnosed with catatonia, and the overlap between people described as catatonic and people described as autistic is quite high. The amount of times that my life was threatened in one way or another by neuroleptics is scary, and I was (as someone labeled severely aggressive and so forth) a prime candidate for them.

These are not safe. These are not even like normal sedatives. These are not harmless sleeping pills. Reducing the dosage does not mean they become safe. I am not too unusual in my reactions to these things. And there are probably autistic people dying this minute because of that. I know for a fact others have already died.

And, I forgot, people are so busy “defending” us against other chemicals that don’t have the proven track record of harm that neuroleptics do, that somehow neuroleptics get lost in the mess of “cures” and are rarely questioned.

On AutismDiva’s blog, in response to a discussion of what I wrote in my previous entry, someone posted a response saying that Douglas Biklen’s Autism and the Myth of the Person Alone contradicted this notion of autistic people needing a lot of time alone. I’ve read Autism and the Myth of the Person Alone and I don’t think that’s what it was saying. I think it was trying to describe something like the following:

In assorted institutions, any interest in other people that I showed was invisible to the average non-autistic person. This was not because I was particularly trying to hide it, but because my brain did not respond to interest in people by generating a whole set of body movements that most people would use to convey that interest. In fact it did not attempt to convey that interest at all.

Thus, a lot of time passed in which I was very interested in the people around me, often watching what they were doing and perceiving myself to be interacting with them. However, the people outside me, seeing none of the typical body signals for this experience, described me as aloof and showing no interest in people whatsoever.

A similar misunderstanding has caused many autistic people who are quite aware of our environments and able to think clearly about people and a number of other things, to be considered totally unaware of our surroundings, probably lost in a fantasy world of our own, and certainly not able to perceive, understand, or interact with people. There is a certain socially acceptable set of physical reactions to knowledge that we are expected to show, and we do not show it in some or all circumstances. The expectation of those physical reactions, causes people to assume we don’t really understand anything, or can’t really understand anything, and are just totally isolated “in our own worlds”.

The reasons for the lack of typical reaction are several, only some of which have to do with being oblivious, and even those of us oblivious to many things are rarely as oblivious as we are thought to be.

There is a myth that autism is characterized by a kind of total mental and emotional isolation from the rest of the social world, possibly from the physical world in general, and so forth. That myth is quite often not true. That myth is the one that Douglas Biklen tackles very well in Autism and the Myth of the Person Alone.

However.

Many autistic people find being around people exhausting. Even if we perceive what people are, even if we like people and want to spend time with them, being around people causes an enormous drain on perceptual and motor resources.

If you put me in a room with people for long enough I stop being able to understand my surroundings at all, or move at all, or both. Eventually every noise they make sends a wave of pain like lightning through my entire body. My body itself goes limp. Then it gets zapped. Every possible source of stimulation turns into a jolt, and the jolts keep going through me, but my muscles may even stop responding to those. Everything turns into excruciating pain. I turn into a quivering blob who can neither move nor understand things as basic as color, all sensation has simply become a source of pain, and then even after the pain has faded out there’s a whole lot of nothing.

This is not an exaggeration. This is what happens to me when I have to consistently process the presence of humans for days on end. The above is what happened to me when circumstances forced me and a friend (also autistic) to room with each other temporarily. (She did not fare much better.) Between living with her, and her staff coming in and out, and my staff coming in and out, I rediscovered some interesting and painful depths of overload.

Biklen himself describes this in Autism and the Myth of the Person Alone, and acknowledges that being around people can be overloading, and that aloneness can be a necessary strategy in dealing with this. He takes issue only with the extent of the aloneness that is usually assumed about us, and the idea that aloneness is truly central to what being autistic is about. I agree with him.

Being autistic is about being someone who processes information, thinks, feels, and responds in ways that are not standard. The much-discussed “social issues” are outgrowths of the way this kind of person relates to the more standard kind of person and vice versa. A need for aloneness, when it exists, is still an outgrowth of this difference.

The fact that I need to be alone a lot does not mean I do not like people. I love my friends. I have friends. I understand a lot of things about people, I perceive much more than I am able to show in the rapid interactions that are usually expected, and I am certainly not totally oblivious to people, uninterested in them, or uninterested in the world in general. When I meet a person I really click with, we can spend more time together than is good for us.

All that doesn’t mean that people are not draining and exhausting. Lots of people enjoy doing things that they could not possibly sustain all the time. I enjoy spending time with some people, but I can’t possibly sustain it. I need to be able to stop. I need to be able to do something simple and repetitive and utterly familiar. I need to crawl into a dark room and hide until my brain stops reeling and the pain subsides. I need this like I need sleep. In fact, I need it if I am to understand anything, but social things tax understanding with their complexity and their demands for response, so much that they are able to induce this need more rapidly.

Large group social events are always interesting. I remember one of the last large meetings I attended. The majority of speech sounded like running water, and the majority of sights sort of congealed into a visual mass of color and shape. I could perceive patterns around me, many of the social undercurrents in fact were starkly visible to me, but all the words and “meanings” were lost. Occasionally I would notice that someone had been waving their hands in my face or pressing their face close to mine, loudly asking whether I was okay. The sea of patterns was interesting but exhausting, I had trouble tracking all the usual things that most people would be expected to track in such circumstances, and I had to be pushed up to my room. I was certainly aware of things, but it was not the kind of awareness that is conducive to rapidly responding or getting a lot out of a social situation, at least not that social situation.

Trying to function in a situation like that, simply trying to understand and emit language for instance, or just to not start screaming and flailing or anything, is an interesting juggling act that often ends up with dropping all the balls. It requires a lot of practice, effort, and control. And being alone afterwards, and often beforehand to prepare, is essential.

Sue Rubin explains (in Autism and the Myth of the Person Alone):

As discussed previously I tend to detach myself from social situations at times where autism is in control of my capability to relate to those around me. This does not mean that I don’t enjoy socializing with my peers but at times autism will not allow me the desire to socially interact.

I would not put it exactly as she does, but she’s describing something very similar. It’s just not possible to push interaction past a certain point. This fact does not mean that we are uninterested in or totally oblivious to people. But the fact that we are not uninterested or oblivious, likewise, does not mean we don’t find people overloading or impossible some days.

People emit large amounts of complex information. They are unpredictable. They expect reactions.

My first memories of what I now know to be groups of people are memories of large teeming swirls of chaos that seemed painful and undesirable to approach. My experience of people was initially of patterns of movement and sound and smell (smell stuck the most consistently, along with movement) and patchwork visuals, that expected things of you. My experience of people can still be like that today. I can fade them into the background, less overloading, but not possible to interact with that way. Or I can try to perceive and respond to these loud chaotic jumbles of ever-changing information that have clear expectations of how I must respond to them and that come with parts like eyes and certain motion styles that can be quite intimidating.

This is of course not how I normally describe people. But it’s how I normally perceive people, the newer the person the more chaotic. I know what people are, over time all the information settles into my brain in mostly the right places, but it settles slowly and the initial impression of any new person or thing is of painful chaos, more chaotic the more complex, and people are among the most complex things out there.

Unless there’s some way that they fit into a pattern, such as the pattern of the people who come to help me shower, in which case it’s easier. The people who come to help with other things, unfortunately, do not fit into a pattern so well since what they help me with differs depending on the day. With the showers there is a written set of instructions that everyone follows pretty much the same way every time.

Some people are more chaotic than others. Yesterday I had a staff person who was so chaotic that just having her sit quietly behind me was exhausting. My friend has a staff person who is similar, and induced rapid shutdown in both of us with her constant friendly smalltalk that expected a response. Neither of these people are bad, they’re just exhausting to many autistic people. I’m sure that to people wired to deal more efficiently with that kind of information, both of them seem very pleasant and friendly.

But it is these different perceptual experiences. Different responses. Different internal experiences. Those things are the root of autism. The social stuff is just the result of the collision between this brain system and non-autistic brain systems.

This post is a long-winded way of saying that Autism and the Myth of the Person Alone is quite right about certain stereotypes being wrong, and about aloneness not being the essential aspect of being autistic. And of also saying that, even though this is true, it’s still the case that being alone a lot is as necessary to many of us as sleeping. Sleep does not define the non-autistic mind, but it’s certainly necessary to it. The fact that we often go off by ourselves is quite often a way of protecting us from an onslaught of sensory information, expected motor responses, and pain that we could not handle. But it’s not The Ultimate Definition of who we are or necessarily a sign that we can’t ever stand or understand people.

Similarly, I am exhausted by writing this, because I am exhausted by language of any kind, expressive or receptive. However, there is a stereotype that autistic people (especially those who look like me, apparently) can neither understand nor use language. This is not true. But it is not true, either, that I find language easy and non-exhausting or can sustain it indefinitely. The exact opposite of the stereotype is no more true than the stereotype itself.

Tags: autismdiva douglasbiklen autism institutions solitude outsideperceptions overload shutdown suerubin language social debunking