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

Barb Moran writes, “They never used words like reward and punishment at Menninger’s, but who were they kidding? If I wasn’t allowed to go somewhere because of my behaviour, what was it? In 1967 I had a funny thought of what it would be like if you put a comma between first and last names of people like you do places, as in “Topeka, Kansas.” I laughed about it. I even told the worker why I was laughing. She didn’t let me go to the carnival they were having at my school that day because I laughed. I hadn’t done anything wrong except laugh at something that someone else didn’t think was funny. And now they say that laughter is good for the immune system!” (From Sharing Our Wisdom, “Life in the ‘Best’ Hospital'”, Barbara Moran)

Institutions, both traditional and non-traditional, launched a similar attack on me. In my case, one of their primary targets was my tendency to spend time alone. “Isolating” was nearly a criminal offense and there were several programs designed, by reward, punishment, or both, to keep me from doing it, or to spend more time around people (effectively the same thing).

They must have been successful.

Tonight, I am overloaded. Very overloaded. The kind of thing where I really don’t belong around anyone else, I belong alone as much as possible until my brain stops doing this to me. I would not be comfortable around another person, and I would not, despite having topics I need to discuss with one particular person, be able to hold a good discussion on those topics.

I used to know this. This used to be instinct. My body used to just naturally go to my room (when I had one), or avoid being around or noticing people as much as possible (when I didn’t or wasn’t allowed in my room).

Yes, I used to walk into my room and lie down. And be confronted with staff barking at me about “isolating” and “withdrawal” and other things that were apparently criminal. Sometimes I was picked up bodily and placed in the dayroom, or living room, or whatever they called it in any given place. Even when I was sick or overdrugged, blinking and noting that half a day had gone by and there was drool on my shirt. It was important to them, very important, that my body be among other people at all possible times.

This is one of the problems with what is done to autistic people: It often makes us less able to function. Being able to spend time alone, and to recognize when we need to spend time alone, is vital to many of us. Yet many of us are put on programs just like mine, that train us against our correct instincts. These days, when I am so overloaded that I know I need to stay away from people — days like today — I have to fight an urge to at least be in a room with other people and a fear that I will get into trouble or be a bad person if I don’t. The urge is not explicit, it’s just there, an aspect of training that even I, who don’t pass for NT at all, seem to retain. It takes conscious and deliberate recognition of the urge to fight it.

So I am alone. And I will remain alone as long as I can, and as long as it takes to deal with this. This is better than it was before, and easier to do without fear. But the urge is still there and that is disgusting to me. Not that I am disgusted with myself, but I am disgusted with a set of rules that says behaving, even in a small way, like a non-autistic person, is more important than being a healthy autistic person.

Healthy? When I lived with another person earlier this year, who was almost my dream roommate even though neither of us wanted to live together (it was forced by circumstance), migraines came in full force. I could barely and rarely get out of bed. My pain levels skyrocketed. By afternoon I was often too limp and exhausted to do anything. This is what happens when you force someone whose body needs a huge amount of solitude to live with someone, even someone they’re close to.

I have no innate desire to wear myself out to that point. But if I followed these urges set there by the all-knowing professionals who knew so well that what I “needed” was to be around people for all my waking hours, that’s exactly what would happen. It doesn’t matter if the training to do this was awful or fun (and they did sometimes make it fun and “reward-based,” it changed things not one bit), it matters what they were training me to do, what they did with the power they had over my life.

I am glad that today I am able to say “I need to be alone. I will not deal with people unless I have to.” It’s taken me years to regain even part of this instinct that used to be my own, and to fight the new “instinct” that was implanted by professionals. Hopefully eventually it will be as obvious to me on a regular basis as it used to be, when I need time alone. And all the other things that people tried to train out of me.

Tags: autism dogooders institutions internalmechanics overload solitude medical power treatment training behaviormod

I was recently talking to my neighbor about something a parent had said to me once. I was talking about the real world, and the parent had seemed somehow impressed by the… uh… realness of the situations I was describing for autistic adults. “Realness” is probably a polite word for the kind of situations I was describing, similar to the article I’m linking to here. She made a comment to the effect that I was really living this stuff.

The reaction my neighbor had was something like “Well… yeah. Of course we’re living this stuff. What else would we be doing? If a parent really, really wants to get away from their adult child’s problems, they can stick them in a group home or something, and unfortunately that’s often what happens. What can autistic people do, where can we go when we get worn out?”

The answer is generally nowhere. Or someplace worse than we’re already at. And wherever we go, it’s generally still somewhere in the real world, and we’re still trying to live in it, when we don’t die from it. There are systems set up to give “caregivers” a break from autistic people’s lives, but autistic people just plain live our lives whether or not the “caregivers” are getting a break from us.

So… yes. I live the life of an autistic adult. There’s not really any option of walking away from that life and remaining living, so I’m not sure what’s so impressive about it.

Tags: adulthood outsideperceptions autism parents

On Wrongplanet.net, there’s a recent interview with Temple Grandin. In the interview, Temple Grandin says:

I would think in an ideal world, you don’t want to have people who cant talk, but on the other hand, you definitely don’t want to get rid of all of the autism genetics becvause if you did that, there’d be no scientists. After all, who do you think made the first stone spear back in the caves? It wasn’t the really social people.

She also says:

No, I would not support [something that cured all the autism genes]. because there is a point where mild autistic traits are part of normal human variation. Because on the other end of the spectrum you have Williams Syndrome, and if you look at the brain abnormalities, they’re exactly the opposite of autism. the whole back of the brain, where the hard drive is–there isn’t too much there. But all the social emotional circuits are hooked up so [people with Williams Syndrome] are hyper, hyper, social. I’m gonna bet you there’s a lot of yackety yackety salesman that don’t talk about much of anything who are Williams Syndrome variants. But then you get to a point where a person [with Autism] cannot talk, they’re self injuring themselves, and they cannot live independently. That [is something] you would want to eliminate, if possible, but you would not want to get rid of all the autism genes because you wouldn’t have any computers– you wouldn’t have any scientists.

And:

The problem with the whole thing on curing autism is we do want to do something about low functioning autism. But the upper end.

So, as far as I can tell, the only reason she wants people like me around at all, is because we’re genetically related to people like her and people like her are useful to society. This sentiment seems widespread.

As regards Williams syndrome, I can’t help but remember the end of another Hingsburger book I read. It was about a woman with Williams syndrome. She’d grown up with no exposure to other people like her, and while her parents loved her, a lot of the people at school gave her a lot of trouble for being different. She had, unlike some other people with Williams syndrome that Hingsburger knew, no other people with Williams syndrome to discuss this with, no chance to see that people like her could be valued, no chance to see people like her who were proud of what kind of person they were.

Williams syndrome comes with a certain shape of face. She knew this. And she started trying to destroy her face. Any time she saw a mirror, any time she saw another person with Williams syndrome, anything, she’d try to punch her face or claw it off. When she died, she died terrified that she was going to meet the God who made her into a “defective” kind of person.

If people think this has nothing to do with people making public statements to the effect that people with Williams syndrome are empty-headed and useless with “nothing back there”, they’re wrong.

If people think the reason that I am afraid to look in a mirror or at photographs of myself has nothing to do with people making public statements to the effect that people who have trouble talking and don’t live “independently” and self-injure are useless unless we’re either made into some other kind of person or repositories for the genes that “balance out” the human race from other useless people… they’re wrong too.

This is why I hate the whole concept of the “HFA/AS community”. I know someone who was told explicitly that people like him were not welcome at a meeting for “HFA/AS people” because he looked too “low-functioning” and couldn’t talk some of the time. If he’s out, then I’m certainly out. I suppose we offend people’s delicate sensibilities or something?

Note that I think the division between low-functioning and high-functioning is completely artificial. I do not regard myself as either one because I do not think it is possible to divide up autism that way. I do not think there is a straight continuum from Asperger’s to “full-blown autistic”. I think that there are too many aspects of autism, that can be different in each person, for it to be possible to just draw a neat line as if autism is one trait that varies in “severity”. I say this because sometimes people get the impression that I consider myself low-functioning. I don’t. I don’t consider myself high-functioning either.

But I know that the categories do have a sociological meaning, and that in various aspects of my life I get put on both sides of that sociological meaning. I have been officially labeled low-functioning for whatever it’s worth, and I don’t mean in early childhood. And on the net I’m regarded as high-functioning until proven otherwise because I can write well. I’ve been invited to otherwise “HFA-only” things by people who only know me from the net, and to otherwise “LFA-only” things by people who only know me in person.

And believe me, I would fight just as hard if there were a push to see “LFA” as the only valuable ones, or the only real autistics, or the most pure autistics, or the ones with the truly special gifts that “HFAs” can’t have, or anything else like that. And I have fought sentiments like that where I’ve seen them. Because they do exist. But they are nowhere near so rampant as the “HFA/AS” elitism I see all over the place. So I spend most of my time fighting that.

I think that my existence brings more meaning to the world than simply to pull the gene pool towards the really valuable people. I think that the existence of my friends brings more meaning to the world than simply to pull the gene pool towards the really valuable people. I think that the existence of people with Williams syndrome brings more meaning to the world than to serve as fodder for other people’s intellectual snobbery. And I think these things are true whether or not we hold jobs, or learn certain things.

The name of this blog is “ballastexistenz”. That means “ballast-existence”. It was once widely used in anti-disabled propaganda to try to weed us out of the human race entirely. The reason I titled my blog this, is to highlight that I’m fully aware that I and many others still hold that status in many people’s minds, and to expose that kind of hate for what it is. I don’t believe in ballast-existences. But most people so labeled, even those presumed to be unaware of it, become well aware in some way or another that we are regarded as useless ballast to be tossed away if possible.

That’s where you get people with Williams syndrome trying to rip their faces off. That’s where you get people like me afraid to think about what we look like. That’s the result of this garbage about what kinds of people are and are not useful in the world.

Unfortunately for Temple Grandin’s “ideal world,” we’re not going anywhere. As Eugene Marcus, who Temple Grandin probably also thinks is pretty useless, said, all people are real in the deepest sense of the word, there’s no such thing as a non-human human, even though many of us look, to say the least, non-standard. That sounds like a much better attitude to me.

Tags: templegrandin williamssyndrome autism hierarchies functioninglabels neurodiversity eugenemarcus hingsburger disability politics autismcommunities ethics

In Little Acts of Degradation, Cal Montgomery explains what Project Cleigh is and how people can participate by sending in descriptions of similar acts in their lives. Figured I should let anyone reading this blog know about it.

I’m going to send stuff in, but it’s difficult. First these things seem to occur so often I don’t know where or how to begin. And second — and this is one of those acts in and of itself — my main staff person is so determinedly apolitical that, every time one of these things happens, she frantically comes up with some reason that it really didn’t happen, or really needed to happen, or really wasn’t what I think it was, some reason that makes it the personal quirk of a person that day rather than an overall pattern, because she’s determined (and has said so) not to see certain overall patterns. So I’ve given up talking about these things as they are happening because in her I will as often as not find an excuser rather than an ally, and then I have two problems rather than one on my hands.

So it will be interesting to try to figure out which of these to type up, and then to type them. And I’d urge others with stories like these to send them to Cal for this project.

Tags: disability politics degradation discrimination raggededge calmontgomery

Someone just linked to first person singular piece, which seems like an appropriate title for it given that it seems to be one of those “emotionally honest” accounts that doesn’t examine where the emotions come from and whether they’re appropriate and so forth. This is how she describes finding out about autism:

Autistic. Autism. That word still kicks me right in the stomach. It knocks the wind out of me as much as it did the first time I heard it a year ago, in the cold blunt way we were told of your disorder. “Yup, it’s Autism, and it’s never going to go away.” I remember feeling like all my blood had left my body. And I remember hearing the cold October rain slapping the window of the white, sterile psychologist’s office. It’s one thing to harbour nagging suspicions; it’s quite another to hear the word AUTISM from the mouth of a professional, and to see it in black and white. No longer deniable. Inescapable. Lifelong.

The first autistic people I knew, where the word “autism” was said about them (plenty of my family was autistic without using the word) were in nasty, horrible places with me. But they were not nasty, horrible people, and I never thought they should be some other kind of person. Many of us made friends and communicated with each other while staff were oblivious and considering some or all of us non-communicative and/or incapable of true friendship.

Maybe what I’m writing now mirrors something I wrote a long time ago, but that got lost when my blog crashed: “Lessons on inclusion from a segregated school” was the title.

Where I learned to appreciate neurodiversity was not in the abstraction of an Internet forum but in the undeniable concreteness of institutions for people society wanted to throw away. “Autism” was a word describing the people I found it easiest to communicate with for the most part. But in all of the forms of segregation that I experienced, there was a wide variety of people, and we were forced to deal with each other. And we did deal with each other, in good ways or bad ways, but there was no way for us to control who was there and who wasn’t. So we learned in one way or another to live with everybody.

Everybody meant people with diagnoses that most people are terrified of, as well as ones that are more socially acceptable. There were people with diagnoses of autism, mental retardation, schizophrenia, cerebral palsy, bipolar, depression, dissociation, conduct disorder, personality disorders, low functioning this, high functioning that, and probably anything else that could be thought of. Sometimes we drew lines, and sometimes we didn’t. Sometimes the lines were drawn for us, and we were warned in various ways not to cross.

I learned, though, to appreciate the variedness of people, rather than to regard it as a tragedy. And believe me, we were mostly the sort of people who are regarded as tragic. It’s not ignorance of the full extent of human difference, or what happens to the too-different-for-society’s-comfort, that makes me celebrate its existence. Some people write that it is, that people like me just haven’t seen or experienced these awful things, but the reality is that many of us have, we just differ on our opinions about it.

As a friend, Vanesa, told me — while bouncing off the walls quite literally, while about to spend the bulk of the next few months tied down in a room next to the one I was tied down in, while talking a mile a minute about several topics at once — “The reason we’re here is because we’re not cookie-cutter people. They don’t want us out there.” She later screamed about cookie-cutters in front of staff, who merely regarded it as disorganized manic speech. Words from a private conversation became our code words which became to the staff disorganized speech or echolalia. This is how you communicate around people who simultaneously don’t want you communicating and don’t believe you can communicate or have anything meaningful to communicate. And this — what she said — is also a perfect summary of neurodiversity.

Connection of this kind was frowned upon, was not the norm, but it was there. And it was there most often, for me, around other autistic people.

A purely personal sense of the word autism? I didn’t know what it meant, even when I was diagnosed with it. But it didn’t mean horror, when it did begin to have meaning. It meant people who as often as not inexplicably spoke my language. It meant the first people I felt like I could have two-way communication with on many levels. All of this occurring, oddly enough, inside the nightmare scenario of most parents: the institutions and special schools that really were horrible but that most mistakenly blamed the state of our bodies and minds for our presence in. People blame autism for those places but the existence of autistic people never created those places.

So when I hear the word autism, there are no kicks to my stomach. When I meet autistic people, I have no desire to turn them into non-autistic people. I know the worst things that can be done to us and I know that our being autistic doesn’t cause them. The idea that someone’s version of “emotional honesty” (because it seems to be that pattern, again) means saying how horrible it is that we’ll always be autistic… it’s not good at all.

Tags: autism neurodiversity beauty disability institutions emotion