Monday, November 24, 2008

Letter to Peter Byrne

I just sent the following e-mail to a guy named Peter Byrne:

I read your book Philosophical and Ethical Problems in Mental Handicap, and I have some comments on it.
Firstly, since you mentioned in your book that you have an autistic son, I should probably mention that I am an autistic person - at 15 years old, I was diagnosed with atypical autism, also called PDD NOS.
You seem to have a view I refer to as the 'holy norm'. You seem to think that normal (or whatever term you prefer for a person not considered to have a disability) is something real, objective and desirable, rather than defined purely by context. Even when you use analogies in which the norm is different (the society of blind people) or nonexistent (an autistic person living alone in the wild and functioning well in that setting) you persist in your idea that there is something special and desirable about our society's norm that trumps the considerations of the context the person lives in.
I would not consider the autistic person living alone in the wild disabled, because there is no norm to judge that person against. He/she is only disabled in a context where there is a group of people with a norm that he/she does not fit in ways judged to be important. I would consider a sighted person in a society of blind people who judge sightedness as a negative thing to be disabled, because he/she is not measuring up to his/her society's norm in an important way.
That leads me into another thing. You keep referring to the majority opinion ('we would regard him as afflicted') as if there is something inherently desirable about what most people believe. But majority opinion changes - it used to be an accepted truth by the majority of people in British society that the British were inherently superior to African people and had a moral responsibility to take them over and civilize them. Do you think that what is moral right changes over time, and with where you live? Because people's opinions of morality change over time and depend on where you live.
You speak of the way human bodies are supposed to function. Well, we are evolving by a mixture of chance mutations and differential reproductive success. How most humans functioned millions of years ago was different from how we function now, to the point that if you cloned a prehistoric person and put the resulting baby up for adoption to people who were not told that this child was a prehistoric person, they'd probably consider the child - normal for a prehistoric person - to be disabled. In a few million years, someone like you would probably be disabled by their standards.
You say that Down Syndrome and Fragile X result in a 'loss' of function. If you never had a certain ability, how can you be said to have lost it? In order to have lost something, you must have had it at some point (this is one important reason why your analogy of preventing road accidents is different from preventing autism or some other congenital disability).
As for the idea that a certain part of your body is not working, such as that a blind person's eyes are not working, and therefore some loss of function has occurred because of that, has a person lost something because he/she has a nonfunctioning appendix? Is he/she afflicted by this lack of function? Our society says no, because this is what most (if not all) people in our society are like, and we do just fine without any appendix function.
Regarding your idea that prenatal screening and abortion, or avoiding conception, in order to prevent disability does not devalue disabled people: if people argued that it would be a good idea to prevent the birth of gay people, people with a certain skin color, women, or any other oppressed group, would you also say that this is not devaluing them? Personally, I think saying that 'it's a good idea to prevent people like you being born, and a society without any people like you is alluring' is devaluing the group it's referring to. If my parents had decided not to have any more kids for fear that they'd have another kid like me (they didn't - in fact I have a younger brother, born before my diagnosis but well after they knew I was different and possibly disabled), I would consider that to be devaluing me, and people like me.
There is an important distinction between preventing a disability and preventing a person. It doesn't matter if you think I'm valuable but my autism isn't, or if you think nothing about me is valuable, if the net effect is that all of me - not just my autism - is prevented. And though you can draw a distinction based on the ethics and definition of murder between killing a 2 year old with Down Syndrome, aborting a 16 week fetus with Down Syndrome, or choosing not to conceive because you have a 100% chance of the conceptus having Down Syndrome, in all cases you are not preventing or eliminating a disability, but rather a person. And since you are eliminating/preventing a person, that's what you are devaluing. A comparison with the road accident analogy is if, rather than trying to prevent road accidents, you decided not to provide life-saving medical treatment to someone who's just been in a road accident.
I hope this has made you think.

Tuesday, November 18, 2008

My Life Story

Awhile ago I posted about a discussion I had on a listserv, and alluded to a shift in how I perceived my own story as a result of presenting at the ARM conference. I said then that I should probably write a blog entry about it soon. Since the current Disability Blog Carnival topic is 'I Am' I thought I may as well do it now.
I'll start by telling my story.
I was one of those autistics who have no obvious delays in early childhood, and in fact usually seem gifted. I had normal to advanced milestones (either first words or first steps at 11 months, can't remember which), was happy and curious, and had intense interests (my first word was 'meowmie', meaning cat - it's my impression that babies whose first words aren't 'mama' or 'papa' often have intense interests) and a long attention span. I also slept through the night at only a few weeks old.
When I was 10 months old, my parents had my cousins (a 14 year old girl and her 11 year old brother) over for a visit for awhile, and while they were staying there, the girl told my parents that her father (my father's brother) was sexually abusing me. My parents told the authorities and were told not to take those kids home after the visit because they had custody now. So that's how my cousins came to live with us.
They were both very troubled kids. The boy would have rages and showed no remorse for his behavior, and lied and stole (once, he stole beer from the local store and was caught on videotape). The girl was manipulative and vindictive towards women and flirted with adult men, including my father. To give an example, she insisted on getting those gloves that you can pull the fingertips back to expose your hand - they were also very poorly insulated - and then claimed to her 'friends' that my parents refused to get her decent gloves. Obviously, both of them were hard to look after, and they made each other worse because of extreme sibling rivalry (apparently my uncle used to force them to abuse each other). Around 18 months or so, I became very quiet and withdrawn, although I'm not sure if I actually regressed. I did lose pre-walking skills when they first arrived.
My parents knew they had a lot of problems, but what they didn't realize was that both of them were sexually abusive. The older one ran away from home at 16 and my parents decided she was better off living on her own. The younger one, at the same age, sexually assaulted a classmate and she pressed charges. At that point, my parents realized he was a danger to me (I was also showing some behavior problems suggestive of abuse) so they sent him to another foster home. Shortly afterward, he confessed, and when the police interviewed me I revealed that both of them had abused me.
I actually don't remember any of this. With a few exceptions, all that I remember is from when I was at least 5 years old. I think I repressed those memories, although since J-Mac has a similar lack of early memory without any history of abuse it could be an autistic thing. Anyway, now we're getting to the part that I remember.
I had a good Kindergarten teacher, although I remember her pulling me out from underneath tables and such when I had a meltdown (I think it's a bad idea to do that - just wait for them to calm down and come out on their own). My grade 1 teacher, however, was the worst teacher I ever had. If you search for 'school trauma' on my blog you'll find a lot of stuff about her and the other teachers in that school, so I won't go into it very much here. One thing I will mention is that my teachers wanted me diagnosed with ADD (it was called ADD rather than ADHD back then) and given Ritalin. My parents kept getting me tested at their urging and every expert said I certainly did not meet criteria for ADD. As my mother said in her conference presentation 'we talked abuse and giftedness, they talked ADD and inherent pathology'. My parents also labeled me a dreamer, based on the book Strong-Willed Child or Dreamer?, but my teachers refused to read it.
My parents pulled me from that school halfway through grade 4 (my school had split-grade classes, and even grades were worse than odd grades for me because I couldn't listen in as the older kids were taught). In grade 5, I started in another school. Many autistics have observed that bullying tends to get really bad around that age range - and being a new student made it worse. My teacher there was very nice, but unfortunately, she was apparently too nice to punish bullies. I used to think of her really positively, but now I'm angry that she didn't do more to defend me from them. I keep thinking of the time that the vice principal was our substitute teacher - that day, the bullying was restricted to outside of class. I didn't like the vice principal, however, because when I had meltdowns he was often the one punishing me. It was at that school that I got sex education, which assumed everyone would be straight and resulted in me misainterpreting nonsexual liking for boys as crushes, and also a 'disability awareness' thing that sparked a brief obsession with disabilities resulting in me learning fingerspelling and the braille alphabet and wandering around with my eyes closed a lot.
I stayed at that school for grade 6 and a little bit of grade 7, then transferred to another school with an 'academically talented' program. My parents assumed that the academically talented program was for gifted kids - that's what they were told - but it was actually for teacher-pleasing hard workers with high-average intelligence. A highly creative, autistic, gifted kid who hated school really didn't fit in. The bullying was even worse there, and partway through grade 7 I was kicked out for 'attacking a teacher' (which apparently meant struggling when I was restrained to keep me from running away). While I was there, however, the principal suggested Asperger Syndrome as a diagnosis. My parents described the condition to me, without saying the name of it, and I said 'there's no such condition. If there was, I'd have it!' They didn't pursue that diagnosis any further, apparently because they felt it pathologized things they liked about me, like nonconformism and intense interests.
After I was kicked out, I started being homeschooled. Without doing any research on homeschooling, my parents figured out the method that fit me best, which I've since discovered is called unschooling. Basically, the child directs their own learning. In my case, I've always been an excellent researcher, so I just needed free time to research whatever I chose.
That's how I discovered autism. My mother has double majors in law and history, and her specialism is probably best summed up as 'feminist legal history'. I was obsessively interested in drugs and drug abuse, and my mother did a piece on how drug-abusing mothers and drug-exposed children are portrayed, focusing on a woman referred to as Ms G (a couple of articles about her here and here). She mentioned FAS in her piece, so I decided to research it. As I was researching FAS, I came across an 'online diary' news column by a mother of an autistic boy, and decided to look for more stuff like that. I found Temple Grandin's stuff and focused my interest on stuff written by autistic people, and found the neurodiversity movement. Right around that time, I started recognizing my own features in what I was reading, finding that I identified a lot with autistics, and gradually shifted in my view of myself as having trauma-related 'pseudo-autism', then being on the broader autistic phenotype, and lastly being possibly/probably autistic. I was at this last stage when my mother got a job in another town and we split into two households for awhile, and I went to grade 10 at a regular high school.
Being in school again brought up a pile of emotions, and I started having worse and more frequent flashbacks than I'd had before. It was that year that I thought up the concept of 'school trauma' to describe how I'd been affected by school, because I realized my reaction to bossy teachers and possible bullies (luckily, I wasn't bullied in grade 10) was exactly the same sort of thing as my reaction to revealing outfits, flirting, and unexpected touch. I had the same kind of terror of being called names or given an unreasonable school-type order as of someone trying to get me to do something sexual. My parents set me up with counseling, and during the intake examination (during which they asked a series of question which I correctly identified as the DSM-IV criteria for depression) I happened to mention that I thought I might be autistic. The leading psychologist there promptly told me I had PDD NOS.
The next year my mother's contract wasn't renewed, we went back home and I went back to homeschooling. I became even more of an activist and started getting involved in real-life activism as well as more internet activism. And then my mother and I did a conference presentation on the 'war on autism' at the Association for Research on Mothering conference, and at the end, she told my story. Afterwards, a woman came up to us and said that my life story was very similar to her own autistic son. Asperger Syndrome had been suggested as a diagnosis for him, as well, but she didn't think there was anything wrong with him, so she didn't get him evaluated. Instead, she just raised him to accept himself. When he was in his teens, he also discovered autism and self-diagnosed.
This is what made my viewpoint shift. There is a category of parents who don't seek out diagnosis for their mildly autistic kids, nor do they have the struggles assumed to be typical when a child is undiagnosed autistic. They just accept their kids. And their kids grow up with problems in school and with other kids, but always knowing that their parents love them as they are, and never fully internalizing the 'different = bad' ideology. Then they find out about autism and the neurodiversity movement, and self-identify as autistic. Their first view of themselves-as-autistics is a positive self-identification, similar to a gay person coming out, rather than a negative-other-identification.
I think kids, while growing up, should learn about all sorts of neurologies such as autism, not as disorders, but just as part of diversity. Our society should be flexible enough that an undiagnosed autistic can fit in and be accomodated just fine. And autism and other neurodivergences should be self-identifications, or things parents identify their children with to help understand them - like my parents did with the label 'dreamer'. We should take these differences out of the control of psychologists as 'gatekeepers' to our community.

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Sunday, November 16, 2008

What Do You Think of J-Mac?

A long time ago, I was shown a youtube video of an autistic teen, team manager on a high school basketball team, who got to go in the last couple minutes of the last game of the season and broke a school record with how many points he got in such a short time. At that time, it was just like 'See? We are capable!'
Recently, I found The Game of My Life, an autobiography by that boy - Jason McElwain, also called J-Mac. I'm not sure what I think about J-Mac, so I was thinking of quoting some things he says and asking my readers (if anyone actually reads this) what they think.
At the start of the main body of the book, he says:

"I'm used to people looking at me like I'm different. It doesn't bother me. I don't even notice it. When they ask me what it's like to be autistic, I don't know how to answer. It's just how I am. It's like asking someone what it's like to be tall or short, fat or skinny. It's like asking a tomato what it's like to be a tomato. It's normal. It's me. I don't think I'm any different from anyone else. Really, I don't. I look at the world the same way as anyone else. I see myself in the mirror and how I look to other people. I think about things probably the same way you think about things. It's just that the world looks back at me a little funny, like I'm a little different."

He describes his functioning level and learning over time like this:

"I want to tell people that there are a lot of very successful people who have some type of autism. It's pretty common. Some people have a very severe form of it, and some people have a very mild form of it, and if you're on the mild side you can go to college and get a good job and live what a lot of people would call a normal life. I'm somewhere in between. With me, I started out having a very severe form of it; that's what the doctors told my parents when I was little. But then as I got older, I got more and more social, and I got involved in more and more activities with other kids, and that helped me a lot with my autism. It forced me to do some of the things I wasn't comfortable doing, and to do them over and over until I became comfortable doing them. But you can't grow out of autism. You can't cure it. There are no medicines you can take to make it go away, and now all my friends have graduated high school and gone off to college and I know I'm probably not ever going to college. I understand that. But the reason they're all going to college is to get a job, and I've already got a job. And it's a good job, too. I work at Wegmans, a local supermarket, and I hope to stay at that job, and to me that's a normal life. Maybe someday I'll get an apartment and live on my own, which is what all my friends will be doing, too."

He has a regular pattern of describing a problem he has and saying plenty of non-autistics also have the same problem, possibly milder, like this:

"It's true that sometimes it's hard to put into words what's bouncing around in my head, but I know a lot of people who don't have autism who have the same problem. They say things they don't mean or mean things they don't say. They say one thing and do something else. They forget something they should probably remember."

"I'm not so patient. When something's coming, when something's about to happen, I want it to just hurry up and happen. I'm like, Enough already! Let's go! I guess a lot of people are the same way, but on the other people you don't notice it. On me, you notice it. I think probably this is because of my autism. I think it makes me not so patient. ... I get all nervous and jumpy and I start pacing back and forth. I start talking a lot and asking a lot of questions. I don't know what to do with myself; that's the expression people say for how nervous I can be, how jumpy. When I was little, I used to wave my arms back and forth whenever I got excited, almost like I was flapping, but I didn't do that anymore. At first I had to keep my hands in my pockets to keep from doing it, but after that I just stopped doing it."

As the second of the above quotes indicates, he views some autistic behavior as bad things he should try to stop, such as 'stimming'. Here's a quote about 'autistic outbursts' and another about where he learnt this from:

"The running around and screaming in the middle of the night [night terrors] was called an autistic outburst. I had different kinds of these, not just in the middle of the night. Sometimes I would flap my arms up and down and all around, like a bird. Sometimes I would just kick and scream. Sometimes I would just run around, out of control."

"I don't know where I got this from, but if I fall into one of my bad habits, like humming or flapping my hands or a whole bunch of different things I do when I don't even know I'm doing them, then someone just points it out to me and I focus on it and I get it under control. Usually it's my mom pointing it out to me, what I'm doing wrong, but I guess this is how it is for a lot of people, right? I guess my mom is like a lot of moms. She wants what's best for me. She wants everyone to see me in the best possible way. ... She wants people to think I'm normal, but she's just looking out for me, the same way she looks out for my brother, Josh, and he's not autistic. He's away at college, and she still calls him every night to make sure he's eating properly, or cleaning his room, or doing his homework. She wants what's best for him, too."

However, some parts of being autistic he seems unconcerned about:

"She doesn't want me to say or do anything to embarrass myself, but I don't really get embarrassed. I don't really care about that stuff. I went to a doctor once and he told me that autistic kids usually don't think about how they look to everyone else, and I think that's probably true about me."

"All the best players, the best shooters, they take a thousand shots a day. A thousand shots from the free throw line. A thousand shots from the corner. A thousand shots from the top of the key. A thousand layups. I don't think I took that many shots, but I took a lot of shots. After a while, it's like your memory. It becomes natural. Your body knows what to do because it's done the same thing so many times. That's how it is when you're autistic. Anyway, that's how it is for me."

Here's how he talks about some labels people give him:

"A lot of people, when they hear I'm writing a book, they look at me like I'm making a joke. They don't believe me. They think because I'm autistic I must be slow, or simple, or retarded. Well, I am slow. That's just how my brain works. It takes me a while to get the words out. It takes me a while to get them in, too. And it takes me a while to think about things in a way that I can understand them. Like I said, there are a lot of pages and a lot pf stories to tell, and I have to do it in a special way and all of this takes a while. I'm simple, too. Not in a bad way, I don't think, but I like things a certain way. I like my routines, to break things down into patterns I can understand and control. Keep it simple - that's my thing. ... Like I said, I'm slow. And simple. But I'm not retarded. That's the one thing people always think when they hear the word 'autism,' they think it means you're retarded. Well, that's not true. Sometimes it makes me mad that people think that way, but mostly it makes me frustrated, the way people can treat you like you're not even there. They talk about you right in front of you, like you can't understand what they're saying. They don't take you seriously. It's frustrating - it really is."

"All the time, whenever we had a big game, I kept telling all the guys on the team to keep their focus. That was like my theme. Over and over, I'd say this. The guys on the team would tease me about it. Coach said I was like a broken record. I didn't know what a broken record was, and someone had to explain it to me, and then I understood. But he was right. I can be like a broken record. That's how I'm able to focus, to concentrate. I repeat things to myself, over and over, until it comes. I just repeat myself and repeat myself and eventually I get it right. That's how I break things down. That's how I learn."

So, what do you think of J-Mac?


Friday, November 14, 2008

The Holy Norm

Some people draw a distinction between 'improving the human species', which they see as ethically problematic, and trying to eliminate disabilities. For example, in a book I have called Taking Sides: Clashing Views on Controversial Bioethical Issues, a man called Clifford Grobstein, in an argument about why in-vitro fertilization is ethical, says the following:

"It would also be reassuring to know that defects that limit self-realization and self-satisfaction are the legitimate target [of pre-implantation genetic screening]; that conservation and fuller fruition of humanity as we know it is the goal, not the 'engineering' of new forms of human life."

The Office of Technology Assessment, in trying to justify experiments on animals that aren't permitted with humans, made a related comment:

"The rare human being whose deficiency is complete over a lifespan is nevertheless differently situated from the animal. The condition is a disability - the loss of some skill the person would normally be expected to have. The animal's condition is not disabling, even though it lacks the same skill. The very fact that the human has been deprived of an ability implies that the person has been harmed; a human's failure to acquire an ability means that person is in need of help. The condition of the animal does not call for either inference. This difference, to be sure, makes no mention of rights. Yet it creates a special duty to meet the human need that would not extend to animals. Because the animal without a will has not lost what it was biologically programmed to possess, it 'needs' a will only as a human might 'need' to fly. In neither case does the condition give rise to a moral demand for assistance."

These quotes remind me of a book I read (I thought the title was Deviations, but I haven't found anything by that title on several internet searches so maybe not)[Edit: I found out that it's called The Chrysalids]. Some kind of disaster destroyed civilization as we know it. Although they never outright say so, it's strongly hinted that it was a nuclear war that caused the destruction. Whatever it is, the book is set long afterwards. They have a strong opposition to 'deviations', in plants, animals or people, to the point that the authorities (the government as well as their version of the Bible) have dictated a precise norm for humans and every kind of domestic animal or plant. Deviations from that norm, be they plants, animals or people, are to be killed. The star of the story is a young boy, who, unbeknownst to anyone except a select few, is psychic. He is keeping his power a secret for fear of being destroyed as a deviation.
Although that book had a really dumb ending (which I won't reveal here, in case anyone here reads the book), it's one of the best portrayals I've seen of how atypical children grow to understand their own difference and what it means to their society. And if I can figure out what it's actually called and such, I'll post that here and recommend that people read it. But that's not relevant to my current post.
In that book, the norm (which they capitalized, as the Norm) was considered inherently good and right. Any change from that norm, therefore, was bad. I think a similar idea is present in people who draw a distinction between selecting against traits considered abnormal and selecting against traits considered normal but less desired. They seem to think that normal is something objective, rather than simply a social category, and that something about this 'objective' norm is inherently preferable to any other kind of person. This is believed on such a deep level that it's really hard to even recognize, much less analyze. Most people who believe this have probably never really thought about it.
But that's not what normal really is. Normal is just the features that the vast majority of people share, and is not inherently preferable. I describe this further in this blog entry, with analogies such as genetic immunity to the AIDS virus, which is rare in humans but near-universal in chimpanzees. Just because most people have a certain trait does not mean it is inherently desirable, or that the few who don't are in some way worse off.

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Friday, November 07, 2008

Finding Agreement

There is a listserv I've joined recently, about girls/women on the autistic spectrum, called Autism_in_Girls. It's got a mix of parents of autistic girls, autistic women and various other people.
Anyway, I started out commenting on what people said that triggered posts from me, just as usual. Some were about various features of autism, such as one person wanting to know about anxiety in autistic girls, but when some people posted about biomedical treatments for autism, I commented on that as well. I wasn't as careful as I sometimes am about phrasing my comments diplomatically, and this list has a number of people who support biomedical treatment of autism, so an argument broke out. When someone asked whether I'd come to this list in order to upset people, I felt terrified. It was like I was in a village hearing someone yell "we'll drive the witch out of town". I felt like I was about to be cast out.
So far in this story, it's just what I've had happen on many lists. I say what I think and feel, and everyone likes my unique contribution, then I say 'the unsayable' and people suddenly turn against me. Usually what happens next is that I fight for awhile, and then leave the group, feeling beaten down emotionally. But that's not what happened on this list.
I argued awhile, trying to clarify that I hadn't said any of them were bad parents and the various other things people had read into what I'd said, trying to explain what I really meant and why it was important, and then something really unusual happened. I connected with one of my fiercest opponents.
To summarize what happened, the other person (a mother of an autistic girl) said she'd learn much more from me telling my story than posting inflammatory comments. I replied with a reference to the definition of self-narrating zoo exhibit, saying I didn't want to be one. She replied to that by saying she didn't want me to be a self-narrating zoo exhibit - she wanted me to say what was meaningful and why, how my story shaped my view of autism, what made me say the things I said. She wanted to understand me, in short.
And in reply to that, I took a risk and gave her exactly what she'd asked for. I told my story (in two segments). For those of you who don't know, I was sexually abused by my cousins, attended a really bad school from K-4, attended a somewhat better school with a bullying problem from 5-6, was homeschooled from 7-9, read about neurodiversity and self-diagnosed as autistic at 14 or so, attended a high school for grade 10, was diagnosed autistic at 15, and have been homeschooled for grades 11-12. My parents never thought there was anything 'wrong' with me and refused to have me diagnosed with anything other than PTSD, not because they didn't realize I was different, but because they saw no problem with how I was. This is a brief summary, I told my story in much more detail on this list.
And the risk was worth it. I felt very exposed, saying so much about myself to people who were hostile to me, but after that they weren't hostile any more. They still don't agree with me on many things, but I think they're coming to understand my viewpoint. We've made peace, though I don't know how to go on from here to regular conversation again. I'm still trying to figure out what happened. I'd love to know how this can happen in other settings, but I don't understand it, or how much of it was under my control.
On thinking about it, though, I have some theories about things that may have made this different from other similar encounters.
Firstly, I wasn't the only one. There are several autistic women on this list, one of whom was quite vocal in supporting me (and one who was confused by much of it and kept asking people to clarify, which we did as much as possible). I've read in social psychology textbooks that one person expressing a minority viewpoint in a group has little impact on other group members, but if even one other person expresses agreement, the minority is much more powerful. So that might be part of it - though I've seen times in which multiple autistic neurodiversity advocates argued with a majority of people looking to cure autism and eventually each of them were successfully driven away, so this can't be all that made a difference.
Secondly, a major person on the other side of the argument, though she attacked me personally early on in the argument, used quite a lot of logical discussion and trying to clarify her understanding of my viewpoint as well. Not only did this make it much easier for her and I to come to an agreement in itself, but it also encouraged me to argue better myself. I admit that I did some personal attacks, though mainly towards people group members supported rather than group members themselves (eg, I said 'reputable DAN doctor' was an oxymoron), but in reaction to her model, I stopped doing that.
Lastly, I think I was different. Some of this took place during the lead-up to the ARM conference, when I was getting a really heavy dose of anti-autism stuff while simultaneously having a lot of personal support, and the bulk of it took place right afterwards, when I'd had a big shift in my viewpoint of parents of autistics as a result of my mother and the numerous activist mothers I met at the conference, as well as a shift in understanding myself and my own story (which I should probably blog about soon). That conference made me much more confident as well, and therefore less prone to defensiveness in reaction to that argument. I was able to confidently say 'no' to a request for proof of my diagnosis, and rather than feeling like my story was too atypical to teach anyone and would just show I had no right to talk about autism, I felt that my story illustrated something useful and significant.

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Monday, November 03, 2008

Creating Panic

I've been meaning to write this since we went to the ARM conference, but I've been putting it off thinking I'd link to our conference presentation with this. Then my mother pointed out that our conference presentation has some stuff about me, such as pictures, that I'd rather not have people viewing over the Internet. So, if I can think of a way to edit it so it doesn't reveal stuff I don't want revealed, I'll look into to putting it up, but in the meantime and in case I don't put it up, here's the post I was thinking of.
I've known for a long time that many parents of autistic kids are desperately worried about curing their children. It's hard to do much in autistic self-advocacy without seeing that. And I knew the 'experts' were reflecting this desperation by peddling miracle cures. I just sort of assumed that parents were so desperate because of societal intolerance for difference, and that the experts were simply responding to that. This is the idea encouraged by a lot of criticisms of quacks 'taking advantage of people's desperation', an idea fairly accurate in the area of cancer treatment that has also been applied to autism treatment.
But my mother's conference presentation argued something different. She looked at the stuff that I found, and suggested that the experts were in fact creating this desperation, not just responding to it. When they say unfounded claims like '90% of untreated autistics are institutionalized' (popularly tossed around by ABA proponents, with no reference ever being given) or 'you can't wait nine months for an assessment, you can't even wait two months' (which was said by Dr Greenspan in the book Could it Be Autism?), they aren't just getting it wrong, with no motive for it. They are, in fact, creating demand for their product, just like advertisers do.
This doesn't mean society's attitudes towards difference aren't part of it. They are. The very reason these dire threats carry so much sting is because people are scared of disability. And they also feed into this, in that such threats make people even more scared, but I know that fear of disability came first. In fact, in the 1800s, the 'experts' played a much more positive role, counseling against things like keeping your disabled son locked in the attic and saying 'we can teach them something' (see On Some of the Mental Affections of Childhood and Youth, by John Langdon Down). That worked to bring them into their role of treating and educating developmentally disabled people. Now they're doing something else to maintain and build that role.
And while I don't know what the 'experts' are thinking when they do this, I think many of them are well-meaning. This might, in fact, be unintentional, be them simply repeating what they've been taught from outdated case reports of institutionalized and neglected or just simply unusually severe cases, and comparing those reports with the children they've seen with treatment. But in some cases, it could actually be intentional.
What made me realize this was my father's obsession with Westerns (I'm not sure why, he always criticizes them as poorly written, but he likes to read them), because he happened to mention that many doctors in those stories would exaggerate the severity of their patients' conditions so that when what they predicted didn't come true, their treatment would get the credit. And when a child who was described as echolalic and noncommunicative (as those terms are used, not always accurately) at 5 years old develops communicative speech and isn't institutionalized, if parents knew that Leo Kanner's follow-ups back when psychoanalytic treatment was in vogue found that outcome to be relatively common for kids who were echolalic at 5, they wouldn't be as grateful to the ABA therapists as they'd be if they'd been told their child would still be echolalic and noncommunicative as an adult.
This also explains the tendency for parents to actually view their children more negatively after diagnosis. Although parents who misinterpreted troublesome autistic behavior such as literalism or sensory overload as defiance or manipulation often view their child more positively after they are diagnosed, many parents actually viewed many of their children's differences fairly well pre-diagnosis. One parent, in a book I read, talked about how she though her kid was very focused, organized and intelligent - after diagnosis, she interpreted the same behaviors as indicating overfocused attention, repetitive play and splinter skills. It may be partly an accurate shift in expectations, since a non-autistic gifted child typically does better than an autistic child, but partly it's that such behaviors are overtly recategorized and relabeled, even when both labels are equally accurate or the pre-diagnosis one was more so. Cute little quirks suddenly become signs of a disability (another example, in Her Name is Montel, is when Montel's father finds out her odd catlike cry is a sign of Cri-du-Chat Syndrome).
Here are what I see as the major components of how the 'experts' create panic and sell their therapies:
  • unrealistically negative prognosis - such as the 90% institutionalized quote. This can occur without any of the other features in doctors who aren't selling any treatment, but often goes along with promises of miracle treatments to change that prognosis.
  • reframing neutral or positive traits as negative - as seen above in the shift from seeing a long attention span to seeing overfocusing.
  • creating urgency - 'you can't even wait two months'. This means that parents do not have a chance to think through what they are doing before they do it.
  • rosy promises of the treatment - such as, in ABA, the repetition of Lovaas's 47% cured statistic without explaining how Lovaas defined cure, how his treatment differed from modern ABA and the lack of independent replication or evaluation of his 'cured' cases.
  • a theory that is never studied, changes when challenged, or both - this is also seen in ABA with the repetition of the neuroplasticity theory (ABA changes the brains of children so dramatically as to erase or reduce autism) in the absence of any study, or in the ever-changing ways the anti-vaccination movement finds to blame vaccines for autism.

(Can you think of any others? I'm sure I'm missing some.)
This shift in my viewpoint makes me more sympathetic to mothers, and also highlights the importance of critical analysis from multiple perspectives. I naturally tend to loook at autism from the perspective of an autistic person, while my mother sees it from the perspective of a parent of an autistic kid. Both of those perspectives, combined with critical analysis of the messages society is sending, give useful and enlightening interpretations that together can give us a more complete picture of what is going on.

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