On psychiatry, privilege, and parlor games.

The concern has been growing in my mind lately that a lot of autistic people see psychiatric classifications of people as a value-neutral system that is essentially benevolent, scientific, accurate, and probably useful in understanding the way that human beings operate. A few of them have actually experienced psychiatry, but mostly in a cursory way that has avoided the nastier features. A few have experienced the nastier features of psychiatry and believe that if they just put themselves into the right classifications and frenetically avoid the wrong ones (while promoting stereotypes about those they do see as belonging to the wrong ones) then they’ll be okay. Most haven’t experienced much if anything of psychiatry at all and are speaking from a position of immense privilege.

Which is what I thought when some responses to the Autobiography of Anonymous were brought to my attention.

People were actually sitting around trying to figure out whether this woman is autistic or not.

Because apparently when writing about the wrongs that have been done to her, she should’ve been really careful to make sure to include all the stereotypical traits and DSM or ICD criteria she possibly could.

This is someone who has been chewed up and spat out by the psychiatric system where she lives, which is by all accounts (not just hers) nasty.

This is someone whose life is incredibly representative of what happens to chronic psych patients in general, and also of what happens to people who are both unidentified as autistic and not managing to “function in society” in various ways.

This is someone who’s been living alternately homeless, filthy, starving, and in jail because she can’t get the assistance she needs (and who has nonetheless kept looking for it trying to survive).

And people actually seem to care more what diagnostic grouping they can fit her in than what is happening to her.

Do you think this would be okay if she really were a “psychopath” or “attention-seeking”?

Do you think that whether she appears to you over the Internet to be “more autistic” or “more OCD” or “more other things” has a shred of relevance to the fact that she’s in trouble and needs assistance to get out of trouble?

Do you think it’s a good idea to classify someone’s attempts to get help to survive as “attention-seeking”? What about survival-seeking, hello???

Do you really think that psychiatry’s treatment and labeling of her over the years was benevolent, objective, and helping her in some way?

Do you really think that the idea that professionals automatically know what is going on in someone’s head more than that person does — and implicitly reinforcing that idea by automatically siding with professionals and doubting the person damaged by them — is not going to harm people?

I just get this picture in my head of all these people sitting around in relative comfort, playing a mildly amusing parlor game of “What category does this person fit in according to psychiatry, based on one piece of her writing?” and “Can I see autism in someone’s writing?” and so forth. And passing judgment on a woman they have never even met. While said woman might well be starving or homeless or on her way to jail again because she can’t get the assistance she needs in order to survive, and therefore has to put herself in positions where she knows she’ll get in trouble but it’s the only way she’ll be able to eat. The disparity and the callousness here is sickening to watch.

People need to wake up and realize that these classifications aren’t a parlor game, aren’t a neutral classification system, aren’t enforced by people with any more insight into human nature than the average layperson, and aren’t a mildly interesting way to pass the time while watching people at a distance and neatly sorting them into categories the way I used to enjoy sorting buttons as a young child.

They are a life and death matter to a lot of people who don’t have the privilege of sitting around discussing them in a calm and detached manner. The power of that system to essentially blacklist a woman from getting any help to survive, to heap derision and nastiness upon her everywhere she goes, to tell her who she is and deny her the right to define herself in any way, to ensure that no doctor will even see her, to ensure that she will forever be stuck between a rock and a hard place when it comes to survival, to ensure that Internet people will automatically doubt her because of the labels some in the system have bestowed on her… that needs to stop being lost on those who don’t have to live the sort of life she lives. And if people don’t think that it’s mostly privilege (whether ability, class, race, whatever) keeping them out of the same position she’s in, they’ve got another think coming. Her life greatly resembles the lives of a lot of people I know. And her life could be any one of ours. No amount of invocation of psychobabble (which usually translates into “take her, not me”) will change that.

People like her are in danger of dying and all some people can think about is what false medicalized category she belongs in and how “pure” she is or isn’t. That’s the bottom line here, everything else is details.

I am beyond outraged about this: Prednisone and autism.

I am on Prednisone at the moment. I was looking up something about the side-effects of Prednisone, and somehow stumbled onto this long series of pages on Prednisone and autism. There are people actually trying to treat autism with Prednisone, trying to fund studies that will have lots of autistic children on Prednisone as well.

I understand that Prednisone has its uses. It is extremely useful for keeping me breathing at the moment during an asthma criss. My friend the Rettdevil is on it for adrenal failure inability to make cortisol. But asthma crises and adrenal failure and inability to make cortisol can kill you. In these situations, it is worth it to be on Prednisone, either short-term or long-term, even though it is a nasty, scary, and dangerous drug overall that has all kinds of effects that cause problems for people.

Okay, and despite the fact that I am in an asthma crisis at the moment, my doctors are still extremely concerned with keeping me on it for as short a time as possible. As short a time as possible is generally measured in weeks, unless something unforeseen happens. The website I just linked to is talking about keeping young autistic children on Prednisone for months at a time.

Prednisone is not something to be treated lightly. I hear a lot of people say “all drugs have side-effects”. This is true. Prednisone however has such drastic side-effects, because it’s a powerful steroid, that it really should be used to the minimum amount possible. The idea of giving it to autistic children for months at a time is reckless, dangerous, and foolhardy. I cannot believe people are doing this to autistic children, when there’s no way that Prednisone would even do anything for autistic children the way it does for asthmatics.

Prednisone suppresses the immune system leaving people highly vulnerable to infection, can trigger mania, insomnia, and hallucinations in people who are not even susceptible to them in the first place, can create total changes in personality and mood, an appetite that does not quit (and makes you feel like you’re starving even right after you eat), and in general messes with every system in the body it possibly can. It’s great for some purposes but I know almost nobody who likes being on it or thinks it’s a good drug to be on any more than absolutely necessary. Most people I know, who have taken Prednisone, if they know I’m on it, they sort of groan sympathetically. It’s not something people want to take and it’s not remotely safe.

And they are trying to test this in young autistic children. Because they can, apparently. I wish I knew some way to stop them.

Edited to add: Please don’t make this about “drugs” in general or “difficult decisions” or anything of the like. This is about Prednisone being described as something that can make autistic children talk. I really hope that if, say, someone started marketing chemotherapy at autistic children (who did not have cancer), there would be an outcry rather than various comments about how some parents choose to use “drugs” for their kids or something. Drugs are not a monolithic category and treating them as such confuses the issues rather than clarifies them.

Call for Action to Support Autistic Student Facing Severe Discrimination

I am reposting this verbatim from a mailing list. As a friend just said, “That’s A) disgusting, B) deserves a lawsuit.”

Call for Immediate Action:

Below is a letter from a mother regarding an egregious example of mistreatment of her daughter, a member of our special needs community. Brigid, a girl with autism and a serious physical injury, will not be graduating with her class, and will lose out on a scholarship that she has earned to Cornell College because her school district has refused to accommodate her special needs!

We cannot let this stand. As individuals, family members and friends of specials needs, and people who believe in justice, we must immediately voice our support for Brigid and demand that she be given credit for her work and be allowed to graduate with her class! Our children with special needs within the public and private school system depend upon our taking a stand in situations like this, so that other children do not suffer what Brigid has been forced to endure.

Please join with me to demand justice for Brigid, who has worked so hard to appease a school system that has refused to provide her with appropriate accommodations, discriminated against her and publicly humiliated her! Below are the email addresses of officials of the Catholic Diocese of Portland, the Principal of Catherine McAuley High school where Brigid attended and Department of Education officials from the state of Maine.

Please inundate their email inboxes and telephone with a voice of support for Brigid. We must show her and the rest of the world that the special needs community supports its own and stands together against discrimination and abuse of this sort!

Here are the email addresses and phone numbers to contact:

Bill Wood, Parish Services Coordinator
Disability Services
bwood@ccmaine.org
1-877-621-8520

Bishop Richard Malone, Th.D.
Roman Catholic Diocese of Portland
1-207-773-6471
1-207-773-0182 – fax
http://www.portlanddiocese.net/contact_submit.php

Principal of Catherine McAuley Highschool
Mary Kelleher
sredwardmary@mcauleyhs.org
1-207-797-3802
1-207-797-3804 – fax

David Noble Stockford
Policy Director and Team Leader, Special Services
Maine Department of Education
david.stockford@maine.gov
1-207-624-6650
1-207-624-6651 – fax

Pam Rosen
Maine Advisory Council on Education of Children with Disabilities
Maine Department of Education
Pam.rosen@main.gov
1-207-624-6650
1-207-624-6651 – fax

Sincerely,
Rhonda J. Greenhaw Wood

WOARN – Wisconsin Organizing for Autism Rights Now

Here is the letter her mother wrote the Catholic Diocese of Portland:

Dear Mr. W,

I am contacting you because of your role in Disability Services for the Roman Catholic Diocese of Portland. My daughter has attended Catherine McAuley High school for 4 years. She is a wonderful young woman, who works very hard, and has suffered greatly from the misunderstandings, intolerance, and most importantly, from the code of silence surrounding disabilities at McAuley High School.

Brigid is a student with an Autism Spectrum Disorder. In addition, she sustained a closed head injury in March, 2005. This injury resulted in her spending the remainder of her sophomore year at the outpatient clinic of New England Rehabilitation Hospital. Brigid strove hard to regain lost skills and to relearn new skills. She completed the coursework for her sophomore year 2 days before her junior year started.

Since that time, Brigid has been absent from school for extended periods of time, due to a seizure disorder resulting from the closed head injury. She has also missed school due to unrelated surgeries. The Principal has always been informed of absences and concerns by Brigid’s physicians and myself. Brigid was, on several occasions, under physician’s orders to refrain from attending school.

Throughout this time, the Administration of the High School has consistently prevented staff from pertinent knowledge regarding Brigid’s absences. The school nurse was not given copies of physician’s notes, letters or recommendations. The Guidance staff was unaware of many challenges this child faces until the middle of this academic year.

As a result, Brigid has been repeatedly academically penalized for physician ordered absences. This is discrimination. She has been humiliated in public. She has been afforded few accommodations, and little, or no, understanding or compassion. Silence and withholding of information by the Administration have been tools of abuse.

The stress of this constant abuse to a young disabled girl led her to a suicide attempt this academic year. With full knowledge of this, the Administration made no changes in the code of silence. Teachers were left to believe that Brigid was truant, lazy, unwilling to work, when, in fact, the opposite was true. Brigid received a failing grade for an assignment involving small motor control, strength, and coordination.

She was unable to do this assignment to the teacher’s expectations because of a documented disability. Brigid received class participation grades of 0% for physician ordered absences. Work delayed due to seizures were graded as late assignments.

On her return to school following a month of seizures, Brigid completed 3 weeks of work within one week, while keeping up with her current assignments. She did this in order to participate in an extra curricular activity. My daughter made a Herculean effort to complete work, as if she were not disabled, and succeeded. Her reward was cruel. She was pulled off of the bus in front of her peers and informed that she may not attend the extracurricular activity she worked so hard for.

This is just one example.

This Spring, Brigid’s counselor and Sweetser Case management and her Neurologist determined that attending Catherine McAuley High School was adverse to Brigid’s health. Brigid continued to work at home on her assignments, I continued to deliver these to staff as I was able. Some staff were not notified that Brigid would not be in school or that assignments were to be delivered to the office for me to pick up. Consequently, the assignments were withheld.

It took several weeks for Brigid to regain the strength and courage to enter school again. Two weeks ago, the Principal informed Brigid’s counselor that this effort would ensure that Brigid could graduate with her class. With help, Brigid managed to attend school every day. She made a concentrated effort to complete all work to the best of her ability, communicate with staff, and do well on her tests.

Today was the last day of classes. Brigid had work completed. Quizzes, tests, final exams complete. Brigid turned in her essay for English class. Brigid had been one of the few students who had read the assigned text. She received one of the highest grades in the quiz about the book. She had a 30 minute conversation with the teacher about the book in early April. Following this conversation, the teacher reported at a meeting with Administration, myself, and Sweetser that Brigid knew the material well. She later requested that Brigid write an additional essay about the book.

Today, when Brigid gave this essay to the teacher, the teacher informed Brigid that she had decided not to accept the work. Brigid will receive a zero, and fail.

A similar occurrence took place last term. Although the Principal told myself, staff, and Brigid, that work outstanding (due to medical concerns) would be accepted until a stated date, one teacher capriciously decided to ignore the Principal’s decision. Brigid received a failing grade for doing all of her work very well and giving it to the teacher on time.

The Principal’s responses have been that teachers make their own decisions for their own classes and that this matter is not in her control.

Again, Brigid has learned that some people are not true to their word and that this is considered acceptable by an educational leader and a spiritual leader.

This most recent decision on the part of one staff member, if left unchecked, will compromise Brigid’s future. Brigid will be unable to attend Cornell College, or take advantage of their generous offer of a four year academic scholarship as well as financial aide.

The code of silence at McAuley which surrounds disabilities, combined with the lack of acceptance, accommodation, charity, or decency has damaged my daughter’s educational experience, spiritual experience, sense of trust, and quality of life.

I would have notified you of these egregious events during the past 3 years, but I did not know of the existence of your office and ministry. During the past year, I have notified the Bishop, as well as leaders of Catholic Education in Maine. I have attempted to work constructively with the Disability Rights Center, Sweetser Case Management, Family Crisis Services, physicians, social workers, counselors and the Administration of McAuley High School. My daughter has suffered. She has learned some very hard lessons of loss from the individuals entrusted with her spiritual, moral and academic education.

I do not know if you can help my daughter in any way. I appreciate the time you have taken to read this.

Respectfully,
Gayle Fitzpatrick

Give. Me. Time.

I just had a conversation with a friend. I am completely in awe of the fact that I’ve had a conversation at all. It has been exceedingly difficult to carry on conversations with people lately.

I think people have some illusion in their heads that I am just like a non-disabled person in my head except that I type rather than talk. Certainly that’s an area in which I can pass to some extent at some points in time, because I usually type in the sorts of sentences that most people consider normal.

Guess what? The inside of my head is weird too. I may use the same language you do when I type, but I take a different route to get there. I identify strongly with people — whether they type, speak, both, or neither — whose internal routes look like mine. I don’t identify as much with people who might move vaguely like me and type to communicate but whose brains work in far more typical ways than mine does when it comes to the process of language and communication. This is a major flaw in the way people divide us up into speaking and non-speaking as if that’s the major difference between us (and for that matter as if those categories are fixed, well-defined, and static, I used to be a nominally “speaking person” for instance).

Also guess what? Treating a person equally is not the same as treating them identically. If you have to pretend my brain works just like yours in order to see me as a person, you have a problem. And you are creating a problem for me: people who do this will almost invariably be incapable of seeing the extreme inequality they are perpetuating between us. Making wheelchair users climb stairs is not “equality,” and neither is pretending my brain works like yours if it doesn’t. To do this sort of thing to someone is not a compliment, it’s a form of erasure, you’re ignoring who they are and you’re putting barriers in their path that don’t have to be there.

If you read aloud what I am saying as I am typing, I can’t communicate.

If you finish my sentences for me, I can’t communicate.

If you talk over me, I can’t communicate.

If you rush me, I can’t communicate.

If you interrupt every time I pause to come up with words, I can’t communicate.

And sometimes if you get really close and try to stare at the words I’m typing, I can’t communicate (that’s usually on a speech-output device, and it’s situation-dependent whether that’s a problem or not).

This is not about me being a control-freak who wants to dominate conversations. This is not about me stepping on your hierarchical toes wherever they might be. This is not about some sort of social hierarchy I’m trying to climb. This is about basic access to communication, and people like me are already working really hard, usually on a full-time basis, to communicate with people whose brains work in ways totally different than ours, we just want some reciprocity here.

If you are a non-disabled speaking person, then I can’t shut my ears and ignore you the same way you can shut your eyes or turn away and ignore what’s on the screen of my keyboard. I can’t turn the volume up high enough to shout over you if you decide to shout at me. This is an actual imbalance in power when it comes to communication situations and if you routinely abuse it I will rapidly lose respect for you.

And it takes me effort to come up with words. You might not see the effort. You might look at how fast I type and the sorts of words I use and claim that there is no effort. This does not erase it, and it does not erase what happens when you decide to throw wrenches into my ability to talk to you right and left on the assumption that I’m really not cognitively disabled and I can handle it. The ability to spew words on memorized topics also does not mean anything about other topics (or about the constancy of this ability).

My friend was talking about how when other people besides her talk to me, they usually seem impatient, like they can’t wait the extra few seconds or minutes it takes for me to get words out. She said they don’t seem to understand that there’s no rushing this stuff. I’ve seen people do the same thing to her. She has the same trouble with language I do (stemming, as she pointed out, from the same fairly important way of processing the world we share, so not something we see as a bad thing in and of itself) but she talks and people never give her time to come up with words. People act like she’s done, or should be done, the moment she pauses, just like they do with me. (And they don’t always notice my pauses because it’s all done in typing.)

At any rate, it was great to have a conversation with someone, but boy has it been hard to get anyone else to slow down long enough to have a real conversation these days. I have a number of medical problems going on, and I was not even able to coherently explain them to a doctor on the phone.

There are a number of things that need to be done, and when staff are here it’s hard to talk to them because they’re not as familiar as my friend and they are busy a lot of the time and it’s hard to get the time for a conversation even if they’re the ones who are better than average at talking to me. Lots of stuff isn’t getting done. Lots of communication is not happening. Which is scary because I depend on these people to do things for me and I can’t tell them what needs doing, and there’s nobody else around to do it but me.

Then there’s the fact that most people — in general — seem to have far less accurate receptive language than they think they do, so even if I communicate something in perfect and precise language, it gets garbled by the time it gets to whoever needs to know it. And that has been happening a lot too.

And the fact that often if I tell someone something, that may be the only time for months I can say it (even if it’s urgent), and need to rely on them to write it down or otherwise find a way to remember it because I might not be able to say it again for ages.

These communication problems don’t stop because a person acquires speech, typing, or both. Being able to form sentences on particular topics doesn’t mean what a lot of people think it means. My friend had to spend over half an hour with me today trying to work out what my body was doing wrong. Most people, including most medical professionals, aren’t willing to take that kind of time, but as she pointed out you can’t rush this kind of cognition. There’s a few things I do rapidly, but a lot of things I have a Barliman Butterbur orientation towards, I do it slowly but I can “see through a brick wall in time”.

And time is what most people seem totally unwilling to give me. It often seems in life in general (not just communication situations) like everyone is going around too fast to keep up with, and then getting mad that people like me can’t keep up, treating us like we’re just slowing them down on purpose to fulfill some weird internal need or something, or like we don’t belong there at all mucking up their perfect frenetically-paced world. If you push me for speed, you’ll get shutdown at best and a meltdown at worst, and either way the more pressure you put on for speed the slower I’ll do something. This is not defiance or passive aggression. It’s an inability to work under certain kinds of pressure. It’s a clogging of that little tiny hole at the front of my mind that I have to push vast amounts of information in and out through. There is no speeding up the rate at which I think and respond to things.

And if people would just take a tiny bit more time, these things would be much less of an issue.

Way too familiar of a story.

All I have to say is this is way too close to home, right down to the eventual diagnosis of “autistic catatonia”, and the bizarre side-effects of neuroleptics and other psych drugs (that are by the way a lot more dangerous if you have movement problems like catatonia already). I wonder how many other people this is happening to.

“…knew the moment had arrived for killing the past and coming back to life…”

I got treated fully and consistently like a real person throughout the entire conference I just went to last week [note: “conference” is not the same as “MIT”, this was not at MIT], to a degree that I am still stunned about. But it was all done in a very natural way. There was just this background knowledge that people are people.

And one thing I learned from that is that not everything that I’ve attributed, and seen others attribute, to autism, necessarily is. Because in being treated like a person, actively rather than passively, by the majority of a large group of people around me, I discovered aspects of myself that I didn’t know existed, and whose non-existence I’d previously ascribed to being autistic.

Which got me to wondering something.

How many of the emotional and social problems autistic people have are actually related to being autistic?

I’d be willing to bet it’s less than it looks like.

I have a depth of emotion and social relatedness that I did not know existed until roughly last week. It has totally changed the way I perceive myself, and it has totally changed the way I perceive other people. It’s very difficult to perceive certain aspects of people in general if you don’t know they exist, and if the reason you don’t know they exist is because you’ve basically blocked them out of awareness in order to survive.

I was an incredibly emotionally sensitive and empathetic kid — like a lot of autistic people I’ve talked to, actually. But as an autistic kid I was also a walking target the moment I met other kids. Autistic kids, for some reason, seem to get more than the usual share of this. In fact before we moved when I was still a baby, my older brother was the scapegoat of the entire town we lived in. And as I got into school, I became as subject to bullying by teachers as I was by other students.

My initial reaction was just sheer emotional overload. I came home and screamed and cried for hours. I couldn’t understand why people hated me so much, I hadn’t done anything to them other than exist near them. And eventually I just went numb. Nothing the few people in my life who did treat me like a person could do, was enough to counteract the fact that in the majority of my life I was treated more like a target. The only way I could deal with it was to cut off the parts of me that knew what it was like to be treated like a person.

I’m not telling this story to make you feel bad for me as a person. I’m telling it because assorted variants on these experiences are so close to universal among the autistic people I’ve known. How can you get a good idea of the social abilities or emotional range of a set of people who are treated like this from the moment we encounter other children, sometimes from the moment we encounter other people at all?

Because even the most well-meaning of our relatives can also cause problems for us in this regard. As autistic people, our responses to our parents are often (not always) different in some way than non-autistic people. Many parents unfamiliar with autism will conclude that we are uninterested in them, or even averse to their presence. Even some who see us as socially related to them will be told by doctors that, if we are autistic, this is an illusion, and that autistic children don’t relate to our parents. (Scientific studies, by the way, say otherwise. We do in fact generally have the same degree of attachment to our parents as any other kids.) The myth of the refrigerator parent has been replaced with the myth of the refrigerator child, and many of our parents will believe the new refrigerator child myth.

This in turn affects how they relate to us. If you think that your child is indifferent to you, even rejecting you, you treat them differently than you would treat a child who isn’t. You might either spend less time with them, or spend an inordinate amount of time trying to force them to connect to you in ways that might be physically uncomfortable to them. You might talk in the child’s presence as if the child is not there and cannot hear you. You might characterize the child as lacking in some fundamental attribute of humanity. You might bombard the child with overbearing social approaches that cause the child physical pain without meaning to.

Any and all of which can give us a pretty warped experience of social situations within our own families. Note: I am not trying to blame parents for children being autistic, or for their own ignorance of what being autistic is. I know that discussing parenting in autism in this manner is a taboo subject because of the old psychoanalytic theories of autism (theories I’m familiar with because my own mother was subject to them even as recently as the nineties and I’m very aware of how much pain they cause for families). But I know no way to discuss the effects of growing up autistic around families who don’t understand how to relate to autistic children, without getting into these topics, taboo or not.

An interesting aspect of this in action was the “Autism Every Day” video in fact. I showed the video to the people at the MIT Media Lab recently, but instead of watching it straight through, we stopped it and focused on the social behavior of the children in the video, and the parents in the video. The interesting part to me was that the social behavior of the children was not only often invisible to their parents, but often invisible to the people who worked at the Media Lab as well. I had to point out to them things like one child speaking to her mother and inquiring about her mother’s emotional state, another child’s affection, another child looking up at his mother’s face to gauge her feelings. We concluded that somehow through the camera person focusing on the mothers, combined with the mothers focusing on the camera people, the viewer’s focus was not on the social overtures of the children, who were then possible to describe as not engaging in social overtures even when they were very clearly affectionate, social, and concerned with their parents’ feelings.

So again, how do we measure innate level of social skill in this context? This is a context where autistic people’s parents are somehow (possibly by training from doctors, possibly through instinctively looking for a different set of social cues than the ones we use, possibly because of some other construction they have in their heads that overrides what’s in front of them) clearly not noticing our social approaches or our concern for them.

But it is also a context where many of the things — such as eye contact and physical contact — often used by parents to show affection for their children either panic us or cause us physical pain, and where our “emotional growth” might be measured by others in terms of how much we can deaden our bodies and emotions and allow ourselves to be subjected to terror and pain on a regular basis. Imagine growing up somewhere where to be hit upside the head and locked in a room with a large predatory animal are the two highest forms of affection, and your emotional development is gauged on how well you learn to put up with those situations. To people who experience certain kinds of touch as pain and eye contact as a predator-style threat, that is some part of our experience growing up. And that is an experience we can have in the most loving and caring of families, if our families don’t understand what those experiences feel like to us (and not all of us show pain and discomfort by pulling away, either, so it’s not always possible to gauge our reactions by that sort of thing).

So most of the family situations available to autistic people are some combination of the following, at least at first:

1. Not noticing or understanding the way in which we show affection, social relatedness, and emotion.

2. Using, with good intentions, social approaches that cause pain or fear in us.

3. Forcing social approaches that cause pain or fear in us in the hopes that it will make us into more socially related people.

4. Gauging the appropriateness of our social development in terms of our ability to silently endure that pain and fear.

5. Lacking the sort of social approaches that we can actually process and handle as autistic people.

6. Hearing things said about ourselves, in our presence, that are not true but that we might absorb really early. (Both hostile things and innocent misinformation, potentially.)

This is not to say that our families don’t love us, don’t care about us, don’t want to be doing the right thing. We are born into the usual range of families that any other group of people are born into. But these sorts of things happen even in most well-intentioned and loving families.

And most of our social experiences outside the family are of some combination of rejection, ostracism, hostility, and hate.

What does this do to us?

Can anyone say that in all the time that autistic people have been studied, from the days of the refrigerator mother theory to modern-day genetic theories, anyone has ever separated out what is intrinsic to autistic perceptual structures and what is other things, such as the adaptations that we have to make to a world that is so consistently hostile to us even in environments that would seem loving to most non-autistic children (and we’re often in environments that would not even seem that)?

Because I don’t think they have.

I still have the perceptual system that makes me autistic. But many emotional and social connections are no longer walled off the way I had to make them to survive earlier in life. It’s sort of like the bruised nerve I just got at the dentist, that started out making half of my chin numb, then flooded with pain, and now subsiding to something near normal. I’m past being numb, and getting past the flood of pain, and getting to some level of whatever is normal for me.

There was a level of detachedness, selfishness (the genuine thing, not something mistaken for it), and other things, that were there almost all the time before but have melted away along with the numbness. (I know I must have caused problems for people with some of this stuff. I’m sorry.) I can feel parts of myself internally that I couldn’t before, and I can now perceive parts of other people that I couldn’t before because I was too busy denying that they existed in myself. Things are changing very fast, and although this was gradual in coming, it feels sudden.

And I want to know how many of my emotional and social problems of that nature could be truly blamed on autism (the cognitive and perceptual state), and how many could be blamed on growing up autistic in an extremely hostile environment for autistic people. And I want to know how much this discrepancy exists for other autistic people.

I want to know what a world would look like where autistic people were really and truly accepted in all areas of life, and interacted with in ways that were accessible to us. At least, to the extent anyone else is. I wonder if we would look more empathetic and more social if we didn’t have to deaden those parts of us to survive the onslaught that awaits most of us at school and other places, and if we were around enough people who resembled us that we had early exposure to people whose body language and such made sense to us. I wonder what people with autistic perceptual systems would look like in an autistic-friendly world, and whether our differences would still be too often described in terms of “social skills” and so forth.

I knew moving took effort, but…

I’m at the MIT media lab at the moment (on one of their laptops, in fact), and this morning I got a chance to try that galvanic skin response thing again. It showed something that I thought might be normal, but I was told was definitely not normal: Every time I voluntarily moved a body part, the graph started jumping upwards. I am told that most people can wave their arms around really heavily and not have it do that. All I had to do was move a leg a little bit or even wiggle my toes.

This did not happen during movements that were more automatic. Rocking did not cause the response to jump upwards. Neither did typing. But those were the only two things that didn’t, and that’s because neither of them were something I just decided on doing and then did, they were both run in the background.

I have known for a long time that my relationship to voluntary movement is not the same as my relationship to automatic movements, that there is in fact quite a large difference between the two, and that I process automatic movements as “background” but don’t process voluntary movements that way. And that most movements for me are not automatic, but require finding the body part and making it move around for me in a fairly laborious way.

In fact, I met Oliver Sacks at Human 2.0 the other day, and this is exactly what he and I talked about. I was explaining to him the lengths I go to to string together automatic movements in order to get through the day, and how difficult voluntary movements are in comparison, and so forth. He told me how much effort a friend of his with Parkinson’s expended in his head just planning everything out like that, and I told him my stork analogy, which he liked.

But we’d just been talking about this. And I didn’t know it was going to show up on any sort of objective measurement of the way I moved. In fact when the things started jumping up, the person was asking what was going on, and I said “It’s just from me moving.” And she said “But you moving shouldn’t make it go up like that, most people can wave their arms around frantically, even wave the hand the electrodes are attached to, and nothing like that happens.”

So apparently there is an objectively verifiable measure of the amount of effort I put into even very simple voluntary motions, and also of the fact that the motions of typing and rocking (and presumably other automatic movements that have not yet happened while I was attached to the sensors) are not doing that to me at all.

Dancing in my sleep.

I’ve talked to autistic people who like dancing. Even my brother used to go out dancing all the time. I’ve heard Larry Foard and Sue Rubin and Charles and a bunch of others go on at length about how amazing dancing can be for auties. I’ve never really danced much before. My approach to mandatory dances has often been to run off and spin in a corner somewhere (preferably near enough to the speakers to drown out sound). So while I’ve talked to autistic people who think my mannerisms (especially when they’re in response to things around me) are just like dancing and stuff, and who dance a lot themselves, I’ve never really considered myself one of “those crazy auties who actually like going and getting themselves overloaded dancing and stuff”.

I just got back from a conference on relationships and sexuality for people with developmental disabilities. It was a lot of fun. I learned a lot there. I got to meet Dave Hingsburger which was really cool since I’ve always admired his work (and got to meet a lot of self-advocates who said the same thing). And saw Tia Nellis speak (I’d heard a lot about her too). And I think I learned to dance.

The trick is basically to stick my body in the middle of all the noise and commotion. At that point I get to watch it bend every which way in response to all the stimulation, probably trying to find some way to handle it without screaming or something, but also in the midst of a synesthetic physical sensation that sort of guides the movement. Add in some echopraxia and it’s ready-made dance moves without even having to think about it.

Now, I was still fairly sick at that point. So I was exhausted, even though I was having fun. But these movements were mostly non-voluntary with a small number of voluntary additions. So this strange phenomenon started happening where I’d be dozing off and my body would still be dancing around just as vigorously. When I explained this to a staff person later, she said “I wish I could dance that well in my sleep.” But all those crazy dancing auties seem to now have me on their side, I want to try more of this. It was a lot of fun.

(Edit: Dave has blogged about meeting me too, and I have to say I think it’s cool being compared to a three-legged dog, at least in that context. ;-) )

Manipulative? No. Impertinent? Maybe.

A second post for Blogging Against Disablism Day, even if it’s late by now. (I think they said late posts were okay, and I really haven’t been up to making all the posts I intended to make yesterday.)

Years ago I lived in an apartment that had formerly been occupied by a nurse. I still got some of her nursing magazines in the mail, which I usually threw out. But one of them had a front-page article on spotting manipulative patients, and I stopped and read it.

In this article, I did not learn a whole lot about manipulation. I did learn that some healthcare professionals are systematically trained to view ordinary human behavior as attempts to manipulate them. (I think this says a lot about the egos of the healthcare professionals who come up with this stuff, personally. They think their patients’ every action is about them.) I learned in particular that the following are all, in the eyes of some people, manipulative:

• Telling professionals they’re not giving you their medication on time.
• Complimenting professionals.
• Saying professionals have done or are doing something wrong, either to their faces or to other professionals. Trying to get genuine help from some professionals when being wronged by others.
• Talking to professionals as if you’re their equals.
• Trying to do little things outside of imposed routines to get a sense that you have some degree of autonomy.

They worded it differently, but those are the sorts of situations they were describing.

It is very little wonder then, that during my last emergency room visit, a nurse referred to me as manipulative. She later apologized. But at the time, that’s what she called me. I tried to find out what I was doing that was so manipulative, since I’m not very capable of manipulation and get really frustrated when something I’m doing is construed this way. It turned out, in this instance, that continuing to repeat that I didn’t feel well was the manipulative thing.

I’d gone in because I was breathing really shallowly and clearly headed for bad territory, I couldn’t even sit up. Everyone around me agreed I belonged in there, one doctor even talked about getting me admitted to the hospital so that I could deal with specialists instead of harried emergency room doctors. A 911 call was made. They took me to the hospital. Etc. Etc. Etc.

The doctor there was what one staff person described succinctly and immediately as a jerk. He did not treat me like a human being, he treated me like a lump of flesh that happened to be attached to some interesting numbers he wanted to change. He was annoyed by the fact that I had things to report about what was bothering me that had nothing to do with his esteemed numbers. He ordered a bunch of tests without telling me what he was doing to me, including some that were fairly invasive. He never told me the results, either. I was clearly supposed to lie there like a block of wood and not tell him much of anything about what was going on for me subjectively. His plan was to continue throwing bronchodilators at me until I either got better or they couldn’t give me any more. He made it very clear to me that all his decisions were final, that I was to obey him, and that I had “very little” (he said this with amusement) say in what happened to me.

They kept taking peak flow readings off of me. Generally, I get a much higher one right after a breathing treatment, then it goes down a bit, sometimes a lot. Generally, when I am being treated by someone who truly wishes to monitor me for my health — in fact every other time I’ve been treated for an asthma exacerbation — they wait around for awhile and make sure that I’m stable. Not this guy. He got me up to ten points above my red zone (the color-coded danger zone that you’re supposed to always see a doctor immediately about) immediately after a treatment, and declared me better and stable and ready to go home.

Well… not exactly. My lungs were definitely more opened up, and that was a good thing. But they hurt even more than they had when I’d gotten there. My oxygen level was lower than it had been when the paramedics had been called. I was still extremely lethargic. And I felt like there was a cat sitting on my chest: I was still expending a lot of effort to breathe. I could clearly breathe more air, but it was still taking a lot of effort not to breathe super-shallowly. (Which is non-trivial. One of the real problems with asthma is not just how much air a person can force themselves to pump, but how much exertion it takes to pump it, and therefore what happens to their breathing when they wear out.) And my peak flow was back in the red zone again. In other words, had I been outside of the emergency room, and called a doctor at that point, they’d have told me to go back to the emergency room.

He refused to listen to a word of this. He refused to even look at the peak flow meter showing the number in the red zone, instead preferring to report my previous numbers that were in the yellow zone as my official peak flow. He insisted that nothing I was describing could possibly be happening because my numbers were “so good”. (Ten points above red sustained for all of five minutes isn’t “so good” by just about any definition.) He seemed bothered, even, by the fact that my pulse was now so high from the bronchodilators that there was no way I could take any more of them.

After he hung up on a friend of mine who tried to explain what was happening, and stormed out of the room, my staff went to ask him about a second opinion. He said there was no such thing as a second opinion in the emergency room (untrue, I’ve gotten them there before, easily, from doctors who were less egocentric and more aware of their limitations in certain areas, as well as more aware of patients’ rights). He said that my x-rays were normal and I could go home. (I had not had any x-rays that day. My previous x-rays from the day before had shown a portion of my lung was either collapsed or infected, probably collapsed. He had told me this himself, as had the doctor I’d seen the day before, as later did my pulmonologist, who added that it was almost definitely collapse and not infection.)

He and all the other staff on that shift seemed bothered that I did not feel all that much better. The nurse who was handling my discharge papers seemed to be acting like the doctor. She refused to read off my screen, she told me conversation was pointless and she didn’t have to listen to me, and she talked louder and louder while I tried to type things (and did so when my hand was immobilized by her so I could not reply). She eventually accused me of being manipulative. (She did later apologize for this, and we settled that on a personal level, but I still find the accusation significant.)

I find accusations of that nature frustrating because I don’t really know how to manipulate people in situations like that (if I did I’d manipulate things so that I didn’t get the degree of nastiness some professionals seem to like bestowing on me). And then I have to find out exactly what I’m doing that someone else is seeing as manipulative. She finally told me that the reason I was “manipulative” was because I seemed to want to be admitted when the doctor thought I should be discharged, and because I kept saying that I wasn’t feeling much better. (Well, I wasn’t, and in many ways I felt worse.)

In reality, I just didn’t want to be sent home before I was actually doing well enough to technically be sent home. The discharge papers she had in her hands told me to come back if I was experiencing several things that I was right then experiencing. I did not want to leave and have to come back in a few hours, and I also really wanted to be able to see people who worked in the field of asthma (including one who’d told me he could treat me, but only if I came in through the ER because of hospital rules on how admitting worked) rather than harried generalists who mostly dealt with things like broken legs, and especially rather than a Shift From Hell. I don’t enjoy bouncing back and forth between home and the emergency room, I would rather stay a bit longer and get things really fixed, and then go home and not have to deal with medical professionals at all.

This all by the way was in sharp contrast to the day before. The day before, there had been some concern over whether I was being treated respectfully, but that had been taken care of. The doctor the prior day had not been the most amazing doctor in the world or anything, but he’d listened to what I said about what I was experiencing instead of seeing me as a series of numbers on machines. When they got me stabilized, they waited until I was actually stable — with a peak flow high into the yellow zone with no danger of falling into the red zone at the drop of a hat, and without the feel that I was working really hard to breathe — before discharging me, and they talked to me about how I was feeling to make sure it wasn’t a case of the numbers being deceiving. By the time I left, I was no longer lethargic, I was sitting up a little bit off of the bed, and I was back to my usual fairly fidgety self (when I’d come in I’d been too limp to keep my arms on the stretcher). I was quite happy to leave, both because I hate emergency rooms and because I was genuinely feeling a lot better. Not feeling good — I was still really sick and couldn’t move around a whole lot — but feeling better and as if I was continuing to improve, and not in any immediate danger. I know my body — at least my lungs by now — and I can feel the difference.

Anyway, I was later talking to a friend about the woman who called me manipulative. My friend told me that the woman was saying the word manipulative, but meaning the word “impertinent”: I didn’t know my place. I was telling a doctor he was wrong about how my body felt. I was trying to actually get treated enough to be genuinely stabilized, when they just wanted me out from the moment I got there. My body itself was impertinent enough not to fit into their plans for me, not to be magically fixed after the holy invocation of levalbuterol, and I was impertinent enough to be a real person and not the mannequin I was being treated as.

Not that this entirely surprises me. I have a friend who was ordered out of the same emergency room at gunpoint while unable to move her arms and legs and provided with no wheelchair. (They called security because she was “refusing to comply with her discharge” because she couldn’t move.) I talked to a cab driver who was told by the doctors at this hospital that they would not help him prevent any further heart attacks (he’d already had one), and that they’d only treat him if he had another one. When he said “What if the next one is my last?” they said “Then it won’t matter to you, will it?” The cab driver I got on the way home this last time used to work there as a janitor and said a lot of the doctors and nurses were really nasty to people they saw as beneath them, which happened to include both patients and janitors. I’ve heard a lot of horror stories about parts of this hospital (although other parts of it are really good and I’ve had no complaints about those, just as some people and shifts in the emergency room there are decent).

I talked to my pulmonologist about the whole thing and he said that they get frustrated when they can’t fix people and take it out on the people who aren’t being fixed.

What’s really hard to determine in these situations is when and to what degree there’s discrimination going on and to what degree it’s just people who are having a bad day or mean to everyone in general. And when it’s discrimination, what kind? I’m a woman, I’m cognitively disabled (and come with an entourage from the agency for developmental disabilities), I have a psych record, I’m physically disabled, I wear tinted glasses indoors, I’m fat, and I’m poor (translation: entirely on federal and state assistance for medical insurance). I’m never sure which one of these things, if any, medical professionals are reacting to when they treat me as “less than” other people dealing with identical medical complaints.

And unless I see how others are treated, I don’t always notice how the way I’m treated differs. I recently had a particular urgent medical treatment bumped up sooner not because I was in agony or infected (and I was both), but because I let them know I needed to be at a fairly prestigious university consulting with them on something by a certain date. They were otherwise going to wait a length of time that would be unacceptable for a non-disabled patient with the same problem (I would still, today, be waiting, for a problem that was generating pain almost as high as you can go on the pain scale). When I was a teenager, my parents were told explicitly that people like me didn’t need dental care, because we had no use for nice-looking teeth (my parents blew a gasket and got me a new dentist). But most of the time things are more subtle than that. A more recent dentist denied to me that obvious jaw problems were rooted in any kind of mechanical problem (the jaw specialist barely had to look to figure out that wasn’t true), said that I probably just moved it around too much on my own, and tried to tell me that an infected tooth was probably just red from me touching it, and that the searing pain down the nerve that it was tangled in was probably from me touching my face too much. (He had no basis for thinking I was running around touching my face. And I have experimented since I got the tooth out, and I can hit my face and be unable to replicate that nerve pain even if I hit it in the exact spot the nerve is closest to the surface.) I learned later that a dentist at the same practice had angrily and violently cranked open the mouth of an autistic girl who was too slow in obeying him (her mother had taken her home immediately on seeing this). This was a place that gave good dental care to people who were non-disabled.

But it’s hard to work out what’s going on, when I’m in the middle of it. I have only had a short time in childhood to remember being treated as somewhat normal, and even then I was treated like a child because I was a child. I’m never clear on how adults are treated by doctors in general. I am stunned when I find out that adults with near-identical medical issues but who don’t look developmentally disabled are actually treated with respect. I am even more stunned and awed when I am treated with respect. I tend to experience what other people would consider normal medical care as an amazing miracle, which I shouldn’t, but it’s hard not to fall into that trap when you’ve had your bar set way too low way too long. When I go to a medical professional who treats me the same as any other patient, I feel like an interloper in a world I’m not technically allowed into, and wonder when they’ll discover I’m not allowed and throw me back.

As a result, I often delay or fail to push for treatments most people would get. I’ve only recently been pushed hard enough by friends to try to start averting crises before they turn into full-blown crises, which I’m told is how most other people do it. I’m sometimes more afraid of medical professionals than I am afraid of death.

These things aren’t unique to me. I know a guy who walked for years on a dislocated leg that nobody treated because he was developmentally disabled. I have known several people that doctors refused to treat at all for life-threatening conditions until someone else screamed at them loud enough. (Most of whom are still alive.) I’ve seen medical professionals justify the deaths of people around me as being better than their lives. I’ve even had one former professional confide in me that he used to work in institutions for people like me, and that he used to stand over people’s beds agonizing out loud about why they were alive at all. (He seemed to think I would feel sorry for him on this account, instead he scared the crap out of me.) I’ve heard (and experienced) story after story of people with developmental disabilities and people in the psych system in particular (not to mention those of us who are both) being considered manipulative, or task-avoidant, or behavior disordered, or some other such term, when still trying to function with levels of pain that would put most of our so-called able-bodied caretakers in bed. Because our role is to be in certain places at certain times for certain people, and anything, even pain or illness, that gets in the way of that, is judged manipulation and attempts to get out of what we should be doing, by default.

It’s not the entire medical profession that’s like this, but it definitely seems like if you’re disabled — and some kinds of disabled more than others — you simply don’t get proper medical care. Few people actually say outright that’s what’s going on, but the pattern exists, and it can’t be denied the more you look at it.

Our bodies will continue to be impertinent enough to exist as they are and not as someone else fantasizes them to be. And unless something changes, the default judgment of our reactions to our bodies as they are will to be considered manipulative, or behavior problems, or anything other than what it would be in any other person experiencing the exact same thing. And our impertinence and the impertinence of those around us — otherwise known as advocacy — might be the only thing that allows us to survive in the meantime, whether we get called names for it or not.

How early do we internalize ableism?

This is my post for Blogging Against Disablism Day. I hope to have more, but I’m exhausted from sitting up all the time (which seems to be the only way to keep out of the emergency room, but is hell on non-lung parts of my body), and although I have three or four topics I want to talk about, I don’t know if I’ll finish them all today.

When I was in grade school, there was a girl my age who talked in a loud, nasal voice with highly unusual intonation. She chewed on things that were definitely not food. She could get so absorbed in a book that the only way to get her attention was to move the book or put things on top of it. She did not get along with much of anyone socially. She had loud meltdowns and cried a lot when things went wrong, but she wasn’t spoiled or anything, she was clearly overloaded. Her name and mine were often said together by the other children (along with maybe two other names) as if we had something in common.

I don’t know if she was autistic or not, although it’s certainly my first thought. She definitely wasn’t a typical kid of our age. I vaguely remember her mother having told my mother something about “Jessica’s problems” and her theories about why they existed. (Her name wasn’t really Jessica, Jessica is just a common name for my generation and culture.)

You would think, given all that Jessica and I had in common, we would have liked each other. In reality, she might have liked me. I did not like her.

I did not like her because every time I saw the lack of modulation in her voice, I heard my own unmodulated monotone flung back in my face.

I did not like her because I could see that she got overloaded the same way I did, and I saw overload as a horrible flaw on my part, and did not want to see how it looked on anyone else.

I did not like her because I could read her body language, and her emotions seemed the same kind of raw that mine always were.

I did not like her because she lacked the emotional self-control that I also lacked and hated myself for lacking.

I did not like her because every time I saw her, it was like looking in a mirror. I hated to know what I looked like. Bullies and teachers had made it very clear to me which of my traits were desirable and which were not. Every time I saw myself I saw all those undesirable traits to my disgust and shame. And that is what happened when I saw Jessica. It wasn’t as much that I didn’t like her. I never got to know her very well. It’s that her presence made me profoundly uncomfortable with myself and reflected back and amplified every bit of self-hatred I experienced on a daily basis. I experienced her presence as pain.

Dave Hingsburger has told stories of a woman with, if I remember correctly, Williams syndrome, which tends to come with a certain shape of face. If she saw another person with Williams syndrome, or saw her face in a reflective surface, she would try to pummel her own face into unrecognizability.

I understand why she did this. I shouldn’t understand it — nobody should — but I do. I know what it is like to learn young that you are disgusting, defective, freakish, and shameful. I know what it is like to experience the presence of a person who shares your “defective” traits, not as someone who understands you, but as someone who brings all your self-hatred to the forefront.

What I want to know is why we live in a society that teaches so many disabled kids this lesson so young. I’m not the only person I’ve heard of who had similar experiences as a child, by far. As a child, I should have perceived this girl and others I met like her as people I could understand more easily and maybe even, if we got along well in other ways, make friends with. As it was, I don’t think I was particularly unfriendly to her, but I don’t think I was friendly either. (I only knew her for a year.) And I certainly was terrified of her and every sight of her made me ashamed and disgusted with myself.

Ableism (even on the individual rather than systemic level) doesn’t just affect how non-disabled people treat disabled people. It affects how disabled people think about ourselves, and about other disabled people. I don’t think it’s a coincidence that there are hierarchies in the disability community (more like communities, since there are more than one). People who are seen as better and worse. Terror of being associated with the wrong kinds of disabled people.

I have been in all parts of those hierarchies in different communities. I have been considered the most severely disabled (and hence for some reason undesirable) person in certain institutions. I have been put into the “top” academic class in special education (where they taught things I already knew how to do) and had people bewildered that my best friend was someone from the “bottom” one (where they were taught things I still don’t know how to do). I have been only able to sit in one spot and drool, and I have been told by professionals that I “could do better” than day programs that had people who drooled in them. I have been seen in various places as the weirdest, the most normal, and everything in between, and I’ve had different status assigned to me for each of those things depending on whether weirdness or normalcy is more valued. I’ve played along with these hierarchies, and resisted them, at different points in my life, and in different ways.

And I’m convinced a lot of the hierarchies come from this same internalization of all the ableist values we’re force-fed day in and day out.

I have also grown up being told that who I am is so deeply wrong that by a very young age I had already acquired a revulsion towards anyone who was “deeply wrong” in the same ways. This happened through day-in day-out bullying at school but was encouraged by teachers as well. People were always pointing various things out to me as major flaws and that’s how I came to see them, as disconnected from anything good about myself, but uncontrollable. I remember my horror when my ability to hide some of those “flaws” (a little, and for a short time) began to deteriorate and I saw that I was unable to avoid the category of people I clearly belonged in, and had no effective tools to deal with this realization because I couldn’t even communicate about it. And I remember the level of revulsion I felt when I saw Jessica, a perfectly nice girl my own age who had similar interests to me and was very comprehensible to me. Even her comprehensibility repelled me because I could see so much of what was going on underneath the surface — something I could not see in other people — and so much of it mirrored my worst fears about myself.

I want to know how this sets in so early.

I want to know how it can be stopped.

I still find something disgusting: Not my existence, not Jessica’s existence, but the structures of a society that allows and encourages this to happen to the minds of children, that some of us end up finding ourselves and those most like us disgusting and repellent.