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 Around 18 months or so, I became very quiet and withdrawn, although I'm not sure if I actually regressed.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.

What I Saw Today

Later this month, my mother is (with my assistance) presenting a conference paper about the 'war on autism' metaphor. It's a very important topic, and for the most part I've enjoyed helping her prepare her conference paper. But today...
Today, my mother said she wanted several pictures from the Autism Every Day video. Because she doesn't understand computers very well, I volunteered to get the pictures for her. And to do that, I had to watch large chunks of the video. And you know what I saw?
I saw a child kiss her mother, as her mother complains about her 'always wanting attention'. I saw that same child later being prompted to say 'I love you' - the mother would rather her say a meaningless prompted phrase than spontaneously show her love. I saw that same girl come up to her mother when she was talking about something upsetting and say 'what are you doing?' in a dismayed tone, then walk over to look out of the window as her mother talks about contemplating murder/suicide in preferance to a bad school placement (I've been in bad school placements, and they're not pleasant. But they're not worth dying over.) I saw a child being filmed having his diaper changed, and his mother commenting about how much she hopes he'll be toilet trained soon. I saw a kid trying to engage his mother in interactive stimming, and her saying 'no' and indicating he shouldn't stim. I saw parents pinning their only hopes on a slim chance of a cure, rather than learning to live with a different kind of child. I saw the stark dichotomy between kids being kids and parents talking tragedy.
And my reaction was the same as it was when my teachers treated me unfairly, when my classmates in a new school rejected me for no apparent reason, when people in various extracurricular programs expelled me or told my parents to take extra measures to 'control my behavior' in those programs. Why don't they like me?
Some people think this is just parents expressing their feelings, to raise awareness in order to help their children and others like them. That's not what this is. This is hate. Oh, sure, they 'love their children' - they don't really. Not in the ways that matter. You don't treat people you love like that. If they were talking about neurotypical kids like that, very few people would consider them loving parents.
Autistic people are supposed to 'lack empathy'. OK, if you guys have empathy and we don't, prove it. Watch that video, and imagine they're talking about you. Imagine your parents saying things like that about you, or watching someone else say those things about traits their kid shares with you. If you're part of another group that is discriminated against, imagine watching people say things like that about your group in the presence of children of that group. Imagine fathers talking about how they hope they can get a sex change operation that can make their daughter a boy (not because she is actually a boy inside, and has said so, but because they'd rather have a boy). Imagine white parents talking about thinking about doing a murder-suicide with their black child because the school system is segregated. Imagine straight parents talking despairingly about how their gay kid has had 'so much stolen from them', because, among other things, they'll never marry a girl and have kids with her.
Oh, you may think it's different, because autism is different. It isn't. Yes, we can't do many things neurotypicals can. But our worth, our happiness, does not hinge on that. It should not hinge on that. We deserve to have parents who love us, not their images of what we were supposed to be. We deserve to have parents who pay attention to our expressions of love for them, rather than demanding something artificial instead. We deserve to have parents who can talk about our futures without dread and tears, who can see a future where we remain ourselves and get treated with respect.
Luckily for me, I had that. But so many kids do not.

PS: I'm really upset right now, so I didn't phrase it nearly as diplomatically and carefully as I usually would. If you are a parent of an autistic kid and are offended by this, just think: your kid might someday write blogs like this. Try to make sure they can truthfully say the second-to-last sentence 'Luckily for me, I had that.' If you're thinking 'I just want my kid to be able to write like you can' and using that to justify all this, then remember - what's the point in teaching your child to communicate if you're not willing to listen?

Back to School Meme

I found a meme here in which you answer a series of questions about school.

1. School uniforms: Good thing or bad thing? Why?

Bad thing, because of the accessibility issues involved. Two big groups adversely affected by school uniforms are tactilely defensive students and prosopagnosic students.
Tactile defensiveness, for those who don't know, means that certain touch sensations that most people are fine with are really unpleasant for the person. Many tactilely defensive people can only tolerate certain types of clothes, such as soft loose pants and soft short-sleeved shirts (for me). If the school uniform doesn't happen to be the right kind of clothes, the person either has to break the uniform rule or suffer wearing unpleasant clothes all day.
Prosopagnosia is a specific impairment in facial recognition - a prosopagnosic person, despite having no trouble recognizing other kinds of things, can't recognize people's faces. Prosopagnosic people depend on other cues - such as gait, voice, hairstyle, clothes, place, etc - to recognize people. A school uniform makes everyone look more similar, and therefore makes it harder for prosopagnosic children to function socially. It's a bit like trying to relate to identical twins dressed in identical clothing, as opposed to identical twins dressed in different outfits. The outfits aren't useful from day to day, but if you learn who is wearing what each morning you can tell them apart until they change.
Both tactile defensiveness and prosopagnosia are common among autistic people, by the way.

2. School supplies: Our school district operates under a limited budget and school supplies other than notebooks and paper tend to be common use, meaning the class shares what each child brings in. What is your feeling on providing for the class rather than just your child?

Sure. I'm not selfish.
Actually, I think it's a great idea - get the richer parents to provide supplies not only for their children but the children whose parents can't afford those nifty supplies.
The only problem I could see is if you didn't know this or couldn't afford to buy enough supplies, and so your child didn't get enough opportunity to use what you bought them. But hopefully if you have a mixed-income school with parents who all want the best for their kids, it'll work out.
Now, this raises another issue. Why does the school have such a limited budget? If our society really thinks education is important, why aren't the school systems better funded?

3. Favorite classes: Math or science? English or History? Band or chorus?

Science, by far. I'm actually one of the few people who did really well in science and really poorly in math - science involves so much math that most people who do well in science also do well in math. But I can't stand math unless it's in a meaningful context, which science provides. My mind just turns off with noncontextual math.
I didn't really like English or History. If they were taught properly, I'd have loved both - history is actually really interesting, and I'm an avid reader and excellent writer, but both of those subjects are taught in a boring, regimented, pointless way. They should get creative people to teach those two classes, especially English.

4. Foreign languages: Did your school have a foreign language requirement? What languages did they offer? Did you take a language?

I attended French immersion until I started being homeschooled. In grade 3 or so, we started having English class - the only class that wasn't in French.
I went to grade 10 in an English high school. I'm not sure if they required foreign languages, but I took two foreign languages - Spanish and Mandarin Chinese. I was really disappointed that they didn't offer ASL.

5. Visiting the past: If you could go back to school, would you? Or is it better off in the past?!

Only to do something to change the school. I might go there to help write my book about school trauma.

The Social Value of Demand Avoidance

I read a great book called The Wind Singer. In this book, a set of twins live in a very regimented, controlling walled city called Aramanth. One of them, a girl named Kestrel, is one of the story characters I've identified with the most. She is very idealistic, passionate, and stubborn. She is demand avoidant, though I wouldn't say she has the clinical syndrome characterized by that, because she's not autistic enough.
Anyway, no one in Aramanth is really happy, or at least not as much as they would be in a freer society. But most people can cope. Kestrel, however, can't cope, can't accomodate herself to her environment, so she's the one who changes it.
I'm not sure who it was, but someone once said that "The reasonable man accomodates himself to society, but the unreasonable man expects society to accomodate to him. Therefore, all progress depends on the unreasonable man." The way I see it, demand avoidant people are the 'unreasonable' people in that saying. We're like the canary in the coal mine - the same unpleasant things that others can tolerate are intolerable to us. Teachers with rigid ideas, rigid lesson plans, rigid teaching styles aren't really good teachers for most kids, but they are terrible teachers for demand avoidant kids.
I remember thinking about one girl I know with Rett Syndrome that she might in some ways be better off if she had meltdowns. Because she really needed to know what was expected - if she didn't know, she was confused and functioned much more poorly. But that's not that overtly unpleasant to other people or disruptive to the system she was in, and it was easy to confuse that with her disability. Whereas another girl I worked with, who screamed, self-injured and bit people when her routine was changed - well, everyone working for her made sure to keep a regular routine going, because they couldn't handle her like that. (Of course, in other ways the Rett girl was better off not acting like that - she didn't get hurt, she was probably less upset, and her helpers didn't get scared of her. Also, she was exposed to more things, some of which she couldn't necessarily handle, but some of which was educational or enjoyable in various ways.)
As for demand avoidant autistics, a good example is ABA. Most autistic self-advocates are either opposed to ABA in general, or at very least opposed to most/all ABA programs actually in operation. On Youtube, there are a lot of videos of autistic kids getting ABA, and seldom do those kids seem happy. They seem to be putting up with something unpleasant in exchange for a reward. ABA is all about the child accomodating other people, with no recognition that the child needs to be accomodated by others as well. And the ABA-treated autistics I've met all seem to have very low self-esteem (either that, or they used to and have recovered).
Now, most autistic kids can tolerate ABA, and make progress in an ABA program. Demand avoidant kids aren't like that. I've written elsewhere about how I would have acted in an ABA program, based on my behavior in a controlling school - this is typical of children with the subtype of autism defined by demand avoidance. And because of that, the advice about educating kids like me strongly discourages the use of ABA. I heard one parent say that she wished this syndrome wasn't considered an autism spectrum condition because the standard autism treatments don't work on these kids - I say, based on my experience with autistic kids of all kinds, that the methods that work well with kids like me also work well (with adaptation of course) with all sorts of autistic kids. And with none of the ethical issues of ABA.
Which brings me to my last point. Demand avoidance has a social value in sending the message that there is a problem here. But one danger is that the demand avoidant kid will be treated as an exception, and get what they need, without any benefit to the rest of the children who have a less obvious need for the same treatment. Just because a child doesn't absolutely need a certain environment doesn't mean they won't be better off in that environment. It's like if you saw the canaries in the coal mine having trouble breathing and just said "Oh, canaries need better air than this" without taking into account that the same air is harming the miners to a milder degree. We need to listen to the messages that these 'canaries in the coal mine' are sending.

Some videos I found

I was e-mailed a link to a news article about the movie Including Samuel. After watching that, I decided to look at what they had about autism. Here's some of what I found.

http://abcnews.go.com/video/playerIndex?id=4875053
An Olympic weightlifter who has an autistic son. Favorite quote:

"I remember going into my Bishop and saying 'this is not what I signed up for.' And I was in tears, I was obviously struggling, and he looked at me with a smile, and his infinite wisdom, and said: 'Melanie, this is exactly what you signed up for.' ... I stopped worrying about all the things he wasn't going to do and all the things that he wouldn't become, and I started enjoying who he was. I'm grateful that I finally figured out how to truly enjoy the journey."

http://abcnews.go.com/video/playerIndex?id=5055588
A bunch of siblings of autistic kids. One boy started pretending to be autistic at 4 so he could get more attention - he refused to speak to speak for 2 weeks. Favorite quotes:

"I would just wish that he was happy. I wouldn't necessarily change the disability part, I just - I just wish he would, um, he wouldn't, like, be sad."

"It's harder to understand. It's harder to put yourself in their shoes, so, it - you really don't know. (I have the feeling that you try to put yourself in his shoes.) Oh, yeah, and I do, very often."

http://abcnews.go.com/video/playerIndex?id=5055644
About bullying of autistics. They quote one statistic - 90% of Asperger Syndrome kids are bullied. They also have a cute picture of an autistic kid dressed up as a streetlight. Here's one quote:

"There were a few kids that didn't like me. (And they were calling you names?) Yeah. (Were they t - were they hurting you, physically?) No, they just did the regular stuff. (Like?) Gestures, or calling me names. (What did you do - did you say anything?) No. I didn't. (Just took it quietly?) Yep. (Just hurt inside?) Yep. I mean, after that, my life would never be the same."

http://abcnews.go.com/video/playerIndex?id=4491231
About the movie Autism: The Musical. Favorite quote:

"(What do you think the kids get out of being involved in this kind of production? What do you think they learned?) I think that they learned self-confidence. I mean, how many places do these kids go, where somebody's not trying to make them be different than who they are? Um, this is was place where they were accepted for exactly who they were, and I think it really boosted their self-confidence."

http://abcnews.go.com/video/playerIndex?id=5036816
About the Autistic Self-Advocacy Network and the neurodiversity movement. Favorite quote (in response to an 'expert' saying we need a cure so LFAs can function as well as HFAs):

"(And so we asked Kristina Chew, the mother of Charlie, whose autism is severe.) (If you could take the autism away from Charlie, would you?) I wouldn't choose that, no. We really try to understand him on his own terms. Acceptance, to me, is the beginning of hope."

PS: Kristina Chew has a blog, Autism Vox.

What's the Point of Inclusion?

If you ask most advocates of including developmentally disabled kids in regular classes why these kids should be included, they'll say it's so the child can be friends with normal children.
But does this actually happen?
In the European Journal of Special Needs Education, volume 19, issue 3, pages 317-330, Monchy et al studied 21 mainstreamed kids with 'behavior problems' - 9 with PDD NOS, 1 with ADHD, 3 with PDD NOS and ADHD, 1 with Tourette Syndrome, 2 with Asperger Syndrome, 1 with Reactive Attachment Disorder, and 4 with no specific diagnosis. They categorized these kids and their classmates as 'popular' (liked by the majority of the class), average, ignored (not liked or disliked by most of the class), controversial (liked by many and disliked by many) and rejected (disliked by most of the class) based on children's nominations of their top 3 favorite and top 3 least favorite classmates.
Among the neurotypical kids, 27% were popular, 31% were average, 18% were ignored, 6% were controversial and 19% were rejected. Among the behaviorally disabled kids, none of them were popular, 8 (38%) were average, 3(14%) were ignored, none were controversial, and 10(48%) were rejected. So in other words, about half of the disabled kids were actively disliked by most of their classmates. Around two-thirds were in the two categories that could be considered 'social failure'.
For mainstreamed kids with Down Syndrome, it was better, but still pretty bad. An earlier article in the same journal as the above one (in volume 14, issue 3, pages 212-220) found using the same method that 17% were popular, 26% were average, 52% were ignored, none were controversial and 4% were rejected. For these kids, a little over half could be considered social failures, although most were not actually disliked.
So, for a normal-looking child with unusual behavior, in a regular class, about half of them will be disliked by most of the kids (and probably bullied), and only about a third will be accepted by their classmates. Down Syndrome kids are actually less likely to be actually disliked than neurotypical kids, but about half of them will have few friends in their class. Even for kids with more 'acceptable' disabilities like Down Syndrome, social failure is quite common.
So what's the point of inclusion? As it is now, inclusion is failing to achieve the primary goal for (assuming these numbers generalize to other conditions) the majority of developmentally disabled kids. Either we need to fix it, or try something else.

Letter To a Kid Like Me

Here's something I wrote awhile back. It's what I wish someone had told me when I was 10-12 years old.

Don’t let them tell you you’re not OK. You’re a wonderful person - everyone’s wonderful, even if they’re hurt, even if they do bad things, even if they don’t think they’re wonderful. You need to remember that. Use that knowledge as a shield between you and anyone who tries to hurt you, or says you need to be someone else.
Try to remember you’re not the only one fighting this. You may be surrounded by people who all seem to want to tear you into pieces and rebuild you as someone totally different, but chances are there’s someone on your side. You may not have even met them yet. Keep looking.
You’re not the only one in the world like you. There’s others whose minds work in similar ways, who understand how it feels like you’re an alien in human morph[1], like you look just like everyone else but inside you’re totally different. There’s a name for how you’re different. You may not even understand what’s so strange about you, but there’s still a name for it somewhere, and someday you will find out what it is. You’ll learn what kind of person you really are.
And it’s not your fault if you feel powerless, if you can’t avoid something bad. It’s not your fault if they threaten you and you give in. But fighting back can help you hold on to your power, can help you hold on to yourself. And if you figure out the right way to fight, you can help someone else. But remember, you don’t need to put yourself through more than you can handle to fight the wrongs of the world. You need to learn to take care of yourself as well. You need to find someone you can trust, someone you can be vulnerable around without them hurting you.
Don’t punish yourself. They’re punishing you too much already, and it’s not fair. You need to respect yourself, and love yourself instead of hating yourself. It’s OK to make mistakes. You don’t have to be perfect to be an OK person. You don’t have to know everything to be proud of your mind, and you don’t have to be good at something to like doing it. Don’t let them kill your love of things by making fun of how you do them. Find your own way to enjoy them.
Remember to love yourself. You need to take care of yourself. You’re not selfish if you need things. And there’s more than one right way to do things, doing it differently isn’t the same as doing it the wrong way. You don’t have to do it their way, even if you only want to do it that way because they say it’s wrong. And don’t be afraid to be yourself even when others will think the wrong thing. If they can’t kill you, then you’ll survive, and the only danger is that they’ll damage your self. And the only way to fight that is to be yourself.
Love yourself. It’s not your fault. You don’t have to be serious all the time, don’t let them take your fun away from you. Being silly is not a betrayal of the pain people are going through, it helps you cope. Don’t feel bad if you react the ‘wrong’ way, as long as you care about other people’s pain it’s OK to react in a strange way. It’s OK to laugh from fear if that’s what’s natural for you. It’s OK to find things funny even in the midst of awfulness.
Don’t let anyone tell you you’re a bad person. Everyone is valuable, everyone has some good in them. No one’s perfect. Normal isn’t perfect, in fact you may have noticed normal has some problems with it. But they can be fixed by nice normal people who like diversity. And it’s OK to be white even though white people have done bad things to the other races. Racism isn’t unique to white people, and it’s not counter-white to be nonracist. Same goes for any other difference.
Don’t be afraid to seek help. You can’t fight the world alone, find the people who can help you fight the good fight. Find someone who’ll get angry on your behalf when you are hurt. It can help remind you that you don’t deserve to be hurt.
[1] When I was around 9 years old, I was obsessively interested in a book series called Animorphs, in which five kids get the ability to turn into animals from an alien.

Abuse: Disability Blog Carnival #36

Alright, I've got a lot of interesting (and sad) posts for this one.
Laurie Toby Edison describes the use of allergies for bullying. The victim is a girl severely allergic to peanuts. To get her to stop sitting with them, a group of girls all brought peanut butter and jelly sandwiches. It's a very shocking case, and her take on it is quite interesting.
Kay Olson describes an experience she had with institutional abuse. There are three aspects of this story that are quite important to highlight: firstly, the attitude that doing her job is an annoyance and unduly burdensome (reminiscent of the description of answering call lights in My Contaminated Smile); secondly, the power to deny the opportunity to communicate, which is such a big issue in the lives of assistive communication users; and thirdly, the 'catching' someone doing something they said they needed help with, something I've experienced as well. Another important aspect of her account is the reasons she didn't report it to that woman's superiors. She was afraid she'd be left in the care of a woman who not only was abusive, but who had a grudge against her in particular because she got in trouble with her boss.
David Hingsburger talks about a movie he's been involved with regarding the sexual abuse of developmentally disabled people in a group home. This movie has an important aspect of education, because it vividly shows the steps involved in reporting abuse.
Cusp describes the feelings evoked by the rejection of her application for DLA. Many of these I can relate to, even though I haven't been in that particular situation. When I was signing up for the disabled youth group I belong to, the form asked what I needed assistance with, and I was at a loss. I'm so used to just struggling on my own with the things I struggle with, telling no one or only my family. I finally told them that I tire easily from physical activity, that I have no sense of time, and that I find it hard to navigate by bus, but with each of those, similar things ran through my head. "But after all, I manage don't I?"
Athena, The Integral and Ivan describe their definitions of abuse. Much of this sounds like abuse from the environment, not from other people (although The Integral's stuff certainly is). An interesting idea. Does that meet the definition of abuse?
Bev describes the point of autism awareness. Another, more recent post I stumbled upon on her blog just now is a humorous description of how we need a cure for autism awareness. She discusses Donor X, a sperm donor who has fathered several autistic kids, and how, despite the positive view of autism that one of the parents has shown, the sperm bank removed his sperm. Not just identified it, added a marker stating he's had many autistic kids - they removed it. Can't have those people, even when one of his children has incredible memorization, reading, math and musical ability.
Casdok didn't submit a blog post, but she shared with me a comment posted on her blog (which she'd deleted):

“C isn't special to the rest of the world, he is only special to you. He is a burden to the rest of the world and if he was another part of nature, like an autistic fish for example, would have died long ago. You just use others to keep him alive.
And C is not the kind of high functioning autistic that will ever contribute anything to mankind. But that's okay, if something happens to you they will just control him as they wish with drugs, like you should have allowed them to in the first place. He is not a complete person, he is an autistic that shits all over everything. Get over it.
You made him, put on your big girl panties and deal with it, and stop being so self centered."

Well, that's certainly abusive!
She also makes an interesting comment: 'abuse stems from ignorance.' I wonder about that. I may blog about it later.
Dorry Carr-Harris at the Torontoist discusses an art exhibit about the history of disability discrimination. They presented 13 objects, including a closet with sixteen identical sweatsuits for institution residents to wear, a billboard listing 'four types of mental deficiency' and a bassinet belonging to a 'funny looking kid' who was given a digoxin overdose without her parents' knowledge.
Jeff McNair discusses the horrifying statistics regarding the rate of sexual abuse of developmentally disabled people, and the protective role the Church could serve. He says that ministers should watch out for this, and if they suspect abuse, they should report it. He also discusses the resistance to inclusion that he's encountered when doing activities with developmentally disabled group home residents.
Astrid asks the important question of whether you should pressure disabled children to achieve at a normal level in every area. She discusses reading speed for blind children - Braille readers tend to be slower. Her discussion reminds me of my old post Milestones, in which I argue that a disabled person's achievements should be celebrated based on how hard they were to achieve, rather than undervaluing milestones met later than normal (or overvaluing things which really aren't that hard).
William Peace discusses rich priviledge and a quadriplegic man who can afford state of the art technology and all the best care, and doctors are 'amazed by his progress'. It reminds me of all these people who pay enormous amounts to cure their autistic children, while moaning about the economic burden and ignoring the families just struggling to survive, who have trouble keeping food on the table, much less getting expensive therapies. Another thing I've noticed is the 'perfect lives' phenomenon - if practically everything's gone in your favour for most of your life, as soon as something doesn't, it's an absolute tragedy. The parent quoted in A Work in Progress said that having a developmentally disabled child must be 'every parent's worst nightmare'. Tell that to a refugee mother. Hey, you could even tell that to my mother, who found out her daughter was getting sexually abused in her own home. Clearly, if you think developmental disability is 'every parent's worst nightmare', you have led a sheltered life.
Shiva submitted an excellent post called The Thing Itself is the Abuse, about the common pattern of portraying 'misdiagnosed' people who were abused in a way common for the group they were mistaken as like their treatment would not have been abuse if they really were a member of that group. In my opinion, this is the best post contributed. I was going to give Shiva the blog award I'm supposed to pass on, but xe already got it. I've certainly noticed that as a problem myself. My teachers thought I had ADHD, and treated me badly based on that. Had I really had ADHD, if anything, it would have been worse, because their treatment of me would seem to me to be more 'justified'. In some cases, it is true that the misdiagnosis is the biggest problem (for example, a bipolar child misdiagnosed with ADHD will generally be given medication that is helpful for many ADHDers but induces serious manic symptoms, rapid cycling, and raging in many bipolar people) but it's really important not to assume that, or act as if certain categories of people are okay to abuse.
Knitting Clio posted an entry Good Cause, Bad Idea for Fundraiser about a 'Jail n' Bail' fundraiser for the special olympics. I'm kind of baffled by this. Where did that idea for a fundraiser come from? What did they mean by 'Jail n' Bail'?
Ruth posted about road rage against wheelchair pedestrians, clearly a terrifying situation for the pedestrian. Sometimes I really wonder about people, and road rage is one of those things I don't understand. I actually understand a parent killing their disabled child better than I understand road rage (note: understand is very different from agree).
The Goldfish will be hosting the next Blogging Against Disablism Day on May 1st, and has written a comment about terminology in preparation for it. And the next Disability Blog Carnival will be at cripchick's weblog. The deadline is May 4th, the carnival will be up on May 8th, and the topic is 'Disability Identity' - something I know I will be able to blog insightfully about, as this is an issue I've pondered a lot.
Lastly, I have my own comments. Firstly, I notice that all the posts seem to be primarily about real abuse of disabled people. Although this is an important issue, I'm a bit disappointed that no one discussed the following:

• things wrongly perceived to be abuse of disabled people, such as the belief that denying autistic, ADHD or other disabled children treatment to make them more normal is abuse; the attitude that it's abusive to deliberately have a disabled child, or even not take 'sufficient' measures to prevent their birth; and the assumption that if a disabled woman is pregnant, she must have been raped.
• stereotypes about abuse by disabled people, such as the belief that developmentally disabled men are sexually abusive (because they have 'animal urges' that most of us supress and they don't); the identification of certain disability-related characteristics as indications of a criminal or potential trouble-maker (such as the tale of a bipolar middle-eastern man who was mistaken for a terrorist, or the 'walking while developmentally disabled' crime that Amanda Baggs has gotten in trouble for); or portrayal of simply being exposed to a disabled person as a form of abuse.
• lastly, real abuse by disabled people (especially mentally ill/developmentally disabled abusers), how it is viewed, why they do it, and so on. A certain proportion of abuse survivors go on to perpetuate abuse (such as the autistic mother I heard about with seriously low self esteem who verbally abused her autistic child for being too much like her). Disabled abusers, if they abuse in ways society generally recognizes as wrong, may be more likely to be caught. They are also viewed differently, either as 'can't help it' or as much worse than a non-disabled abuser. And lastly, the existance of disabled abusers feeds into stereotypes regarding disabled people, and is used to justify abusive treatment of disabled people.

Regarding that last category, a study I found recently is relevant. They studied sexual abuse of developmentally disabled people by developmentally disabled or non-disabled men. Firstly, they found that almost half of the reported cases of abuse of a developmentally disabled person involved a disabled abuser. The disabled abusers were more likely to have abused men, more likely to have done sexual touch or masturbation instead of attempted or actual penetration and more likely to have done only a single episode of abuse. All in all, it sounds like they were probably much more often reported. Possible reasons are suggested by the fact that others had witnessed the abuse three times as often if the abuser was disabled, suggesting the disabled abusers were less sneaky when abusing others. Another fact is interesting: though the disabled abusers appear more likely to be identified, they were also much less likely either to be charged or have charges considered. Almost all of the disabled abusers either had no action taken, or in-service action such as warnings to staff working with them, whereas 'only' about 2/3rds of the non-disabled abusers were treated this way.

PS: Laura, the link you sent me seems to be broken, and I couldn't find the post by searching your blog. Sorry.

Autistic Rebellion in a 1930s German School

I've been trying to translate Hans Asperger's 1944 description of 'autistic personality' from German so I can read it. It's difficult, but already I've discovered interesting things about his first case, Fritz V. In many ways, Fritz V sounds like me, only more autistic. He was a clumsy boy, slow and awkward at self-care skills, but said his first word at 10 months and spoke 'like an older' (I think they mean older child). One big difference between us is his ADHD-like behavior - he was noisy, grabbing everything and interested in everything.
What is most interesting to me is his school problems (if you know German, please tell me if I've mistranslated).

"Er war von der Schule eingewiesen: schon am 1. Tage des Schulbesuches hatte sich gezeigt, dass er 'vollkommen schulunfähig' sei." [The school said he was 'perfectly unteachable' after 1 day of attendance.]

"Von klein auf machte er die ärgsten Erziehunsschwierigkeiten; er fügte sich keinem Befehl, tat einfach, was er wollte, oder das gerade Gegenteil des Befohlenen." [From when he was small, he had behavior problems at school; when given a command, however simple, he would do as he pleased or the opposite of what he was told.]

"'sie reizen ihn nur auf', er wird immer gleich aggressiv, schlägt mit allem zu, was er gerade erreicht, ohne Rücksicht, ob er andere ernstlich gefährdet (einmal mit einem Hammer)" ['he just provokes people', he always became aggressive, had no concern for the safety of others (once with a hammer)]

His school problems are much more severe than mine were, but if I'd been attending a 1930s German school, I'd probably have acted the same way. It sounds like he was in full blown rebellion right from the very first day. The school's comments sound like things my teachers might have said about me. In fact, my teachers actually called me unteachable, though not on my very first day. (My father says "she may be unteachable, but boy can she learn!")
It's odd, I'm noticing something I also saw in Leo Kanner's article - they mention things that I know to be true in autistics I've met, but which are either not thought of nowadays or the opposite is considered typical. Supposedly, Asperger Syndrome kids are usually rulebound and trying to be obediant - their disobediance is due to misunderstanding the command, and they'll often try to enforce the rules on other children. They should do very well in a highly controlled school like the 1930s German schools. I'm not like that, and neither is Fritz V. Like me, Fritz V seems to vehemently resist being controlled.
By the way, once I've finished translating it, I'll put it up on the net. Before then, I might put up a text version of the original, so it's easier to Babelfish it.

PS:
I've translated more of it, and even more than Fritz V, Harro L's reaction to school reminds me of myself:

"Er geht während des Unterrichts aus der Bank, kriecht auf allen Vieren in der Klasse herum." (He leaves his desk during instruction and crawls around on the floor.)

I've never heard of anyone else who did that before! I thought I was the only one!

Social Identity

The next Disability Blog Carnival theme is 'The Hardest Part'. I was thinking about it, and decided I didn't want to interpret 'hard' as 'difficult', because that's standard. I wanted to do something different.
Bill Choisser has an online book about prosopagnosia here. I found it among my printouts yesterday and was reading it again, and noticed how he describes identity. One aspect he discusses is 'core identity' - cores are generally hard, so that's the connection. Pretty tangential, I know. I like being tangential.
I have a regular pattern of treating whatever I'm reading as if it doesn't relate at all to myself. In fact, I don't tend to have a sense of 'myself' while reading. But when I reread things, sometimes I suddenly start thinking about how they relate to me.
Anyway, I started wondering what my own identity would look like with that model. I'm female, so my personal identity (what you actually are) would be female. I consider myself female, as opposed to being transsexual or genderqueer or something, so my core identity would also be female. But maybe close to the border, because being female is not as significant to my identity as it seems to be for most. My personal identity is in my core identity, because I'm fine with who I am, but maybe towards the border rather than squarely in. Actually, my core identity is probably very small, only slightly bigger than my personal identity, because I consider myself very unique.
Type is acceptable mating partners. Therefore, my 'type' is nonexistant, because I have no interest in sex with anyone. As for my tribe, it's several parts. One is 'developmentally disabled people', another is 'highly-educated intellectuals'. Or no, on reviewing the definition, it's probably only developmentally disabled people, and my immediate family. It crosses both genders. My personal identity is towards the edge of my tribe, and my core identity is half in and half out, because I don't fully feel a part of any group.
My core identity is certainly hard. It's hardened and solidified to stand the assaults my teachers gave to it, as they tried to force it to move. It's the hardest part in this diagram, the part most resistent to change (except maybe personal identity). I mentioned above that my core identity is small, that's because it curled up for protection. It's strong because it had to be.
And another meaning of hard - this was difficult for me, to figure out where these things are positioned. The hardest part to figure out was probably my tribe. I don't have much of a clear idea what that even means.

New Breakthrough in Counseling

I had a counseling session yesterday. I told my counselor that I'd had a meltdown and a bit about it, but I really didn't want to talk about it, so I started spacing out and said 'my vision's going strange'. She asked me what I meant and I explained that it was all fuzzing over except what I was looking at, which became very clear (it was a basket underneath a chair). I told her that tended to happen when I was upset. Then I said that I felt like I was being pressured to talk about my meltdown even though I didn't want to. This is the first time I've been able to say no to this sort of thing, to say that I don't feel comfortable discussing my bad behavior with a relative stranger. Before, I always just pushed that discomfort down because 'you're supposed to tell your counselor things like this' and also because I'd learnt that not talking about bad things was dangerous.
Then we discussed how I felt counseling wasn't really helping me very much, and how I felt it was too verbal. She suggested writing nice things about myself on rocks so I could handle them when I was upset. I said I wasn't sure that would help, then got the idea to get my younger brother (who was in the waiting room because he'd decided to accompany me) to write stuff on the rocks. He happily did that (partly because he was bored in the waiting room). So then I had a collection of rocks with things like 'nice' and 'good freind' (that's how he spelt it) and 'observant' written on them.
Later that evening, at home, I got into an argument with my brother and had a slight meltdown because I felt like he didn't care about me. My mother coaxed him off to have a bath and meanwhile my father gave me a container for my rocks because the bag I'd been given for them had broken. I started rubbing each one to warm it and then putting it in the container.
The first few I put in, but I found a couple I disagreed with and set them aside, thinking I might do something with them later. A few rocks later, I decided to put the ones I thought weren't wrong in the container, and with the others, work on convincing myself until I felt I could put them in the container.
Mostly, they were all things like 'nice', 'kind', etc, except for 'truthful'. Anyway, I asked my father to tell me ways I fit those when I couldn't think of any myself. By the time I'd gotten them all in, I felt much calmer. (Then I stood up and one I'd overlooked, 'careful', fell off my lap. That was funny.)
Anyway, the big breakthrough was that I found a way of dealing with my feeling of not being cared about in a way that fits my mind, though it may not be standard therapy. I also broke another rule I had that wasn't good for me.

The Moorchild

When I posted an entry about Delia Sherman's book Changeling, someone commented about the book Moorchild by Eloise McGraw. I now have that book. I have a few concerns about it.
Firstly, as in so many other books, the 'happy ending' consists of the parents getting their own child back. In Selma Lagerlof's story, the troll baby goes back to his mother. In Moorchild, Saaski/Moql ends up wandering with Tam, the orphan boy she befriends. Though both are treated with kindness by their human mothers, their mothers clearly would rather have a proper human child.
The only one who shows any sign of preferring the changeling to their own child is Yanno, who is sad that Lekka/Saaski (the stolen child) is terrified of bees, while Saaski/Moql helped him with his beekeeping. In Delia Sherman's book, instead, both Neef (the stolen child) and Changeling go back to their adoptive families in the end. That's the happy ending. Changeling clearly belongs with the humans, despite being a fairy in the form of a human, and Neef wouldn't want to go back there - it's not her home anymore. You never meet Changeling's parents, so you don't know what they want, but they've clearly been decent parents to Changeling, and she loves them.
Another problem, and this is present in both Changeling and Moorchild, is that the children fit in too well. They're only odd. In all the stories of changelings older than infant, if they described the child's abilities, they usually couldn't talk (except when tricked into revealing their true age) and some couldn't walk. They were all severely disabled, 'useless eaters'. But both Changeling and Saaski/Moql are strange rather than obviously disabled. Though Changeling clearly was considered disabled, she's in the category of children who have only recently been considered disabled, not those who were always viewed that way.
Saaski/Moql also should have been more disabled among the fairies, most likely. Apart from being unable to shapeshift or disappear, she seems to have normal abilities for a Folk child. She fits in among them even more than among the humans, until they reject her for what seems not to be much of a reason (after all, she could easily have been accomodated, especially since she was perfectly capable of making herself look the color of moss as she hugged a tree and could have hidden that way and gone out only at night when the risk of capture is less). She is more agile than most humans, but again, she's no less agile than most Folk.
A last comment about the stupid teacherly 'Alladin Reading Group Guide' questions at the end of the book. At one point, they state:

"The Moorchild is dedicated to 'all children who have ever felt different.' Is this another way of saying that the book is dedicated to all children? Do you think every child - or adult - has felt different at some point in their lives?"

I hate this kind of normalization of the experience of being different. Maybe many kids feel different on some occasion, but very few kids, like Saaski/Moql and myself, have felt different virtually every time they're with a group of children. It's totally different from occasional concerns about not fitting in. Instead, you know that you never fit in, you never belong, or at least so rarely it feels like never. It becomes a part of how you see yourself - not within any group but always an outsider. It's like the difference psychologists draw between state and trait. State anxiety means you are simply anxious at the time. Trait anxious means you're an anxious person. Though you may not always be anxious, you are anxious much of your time. Similarly, the feeling of not belonging can be a state or a trait, and it's very different when it's a trait than when it's merely a state.

PS: Here's my favorite write-up of the changeling myth.

Mild Social Difficulties

"The lack of demonstrated empathy is possibly the most dysfunctional aspect of Asperger syndrome.[2] Individuals with AS experience difficulties in basic elements of social interaction, which may include a failure to develop friendships or enjoy spontaneous interests or achievements with others, a lack of social or emotional reciprocity, and impaired nonverbal behaviors such as eye contact, facial expression, posture, and gesture.[1]
Unlike those with autism, people with AS are not usually withdrawn around others; they approach others, even if awkwardly, for example by engaging in a one-sided, long-winded speech about an unusual topic while being oblivious to the listener's feelings or reactions, such as signs of boredom or wanting to leave.[3] This social awkwardness has been called "active, but odd".[1] This failure to react appropriately to social interaction may appear as disregard for other people's feelings, and may come across as insensitive. The cognitive ability of children with AS often lets them articulate social norms in a laboratory context,[1] where they may be able to show a theoretical understanding of other people’s emotions; however, they typically have difficulty acting on this knowledge in fluid, real-life situations.[3] People with AS may analyze and distill their observation of social interaction into rigid behavioral guidelines and apply these rules in awkward ways—such as forced eye contact—resulting in demeanor that appears rigid or socially naive. Childhood desires for companionship can be numbed through a history of failed social encounters."
(Wikipedia entry on Asperger Syndrome)

Descriptions like this make me wonder if I'm really autistic. I have mostly normal nonverbal signals. I make eye contact fairly normally. I talk a lot about my interests, but I'm more likely to notice boredom or discomfort than most autistic people are. I understand a lot of social stuff fairly well.

But descriptions like these are another matter:

"My group has rules and punishments about everything. There are seven of us and there can only be seven. I mean, we have kicked people out for breaking the rules and only then can we add someone.
We have rules about what we wear. You can only wear your hair up (like in a ponytail) once a week. You can't wear a tank top two days in a row. You can only wear jeans on Friday and that's also the only time you can wear sneakers. If you break any of these rules, you can't sit with us at lunch. Monday is the most important day because you want to look your best - it sets the tone for the rest of the week. So wearing something like sweats on Monday is like going into a church and screaming 'I hate Jesus!' when you walk in the door. Friday is downtime. When we hang out that night, we wear sweats, watch movies, and talk about what bothered us during the week.
If you want to invite someone to lunch [from outside the group], you have to formally invite them and the group has to vote on it. We do this because it's like buying a shirt without your friends telling you whether you look good in it or not. You may like someone, but you could be wrong. If three or more people in the group really like her, we offer the girl an extended invitation - for a whole week. That's a trial period - it's like getting a dog at the pound and trying her out before you get her a license and call her 'Fluffy.'
Gabrielle, 15"
(Queen Bees and Wannabes, by Rosalind Wiseman)

That book, about the social complexities of normal teenage girls, really shows me that I'm autistic. I was oblivious to all that stuff. Thinking back, I can identify one Queen Bee and two Targets (including me) from my class in grades 5-6 but the rest I have no idea about. In grade 10, I was a Floater because many of my friends didn't know each other, but I have no idea where any of them fit into the social hierarchy. I didn't even notice there was one!
I remember sitting and wondering why two girls were talking about such boring subjects - who did what to whom and who's in love with whom and who got incredibly drunk at which party. I couldn't keep any of those people straight and I didn't care what they were up to.
Now, autistics form social networks too. But they are looser, because there's much less thought put into it. This actually mimics some cultural differences - my father has noticed many people from India and nearby places are much more into social networking and social rank than Western people.
I wonder how many autistic teens who are supposedly 'indistinguishable from their peers' really are like me - they get the stuff that adults understand about teen culture but not the stuff that adults don't get, and are as out of place as an adult in among the other teenagers.

My Interests

This is my contribution to the current Disability Blog Carnival. The key phrase is 'a few of my favorite things' so I thought I might want to describe the history of my interests.
For those who don't know, a distictive (and diagnostic) characteristic of autistic people is unusual interests. Autistic people often have interests that are unusually intense (for example, spending most of your waking hours thinking about your interest), narrow (only 1-2 interests, the interests themselves often having a fairly narrow focus) and unusual (for example, a 14 year old researching rare syndromes). My interests fit all three of those criteria, although the narrow criteria is only barely met.
My first word was 'meowmi', which probably indicates my earliest interest - cats. When I was 3 months old, one of our cats had kittens, and for awhile in my infancy we had 5 cats. My parents gave one of the kittens away when she got old enough, so then we had 4 cats - 3 of which were highly child-appealing, playful kittens.
I also played with one toy, a shapesorter, obsessively for awhile. As soon as I'd figured out how to not only put the shapes in but also get them out without opening the container, I lost interest in that toy.
My interest in cats broadened into an interest in animals that refocused into an interest in the rainforest. My favorite country was Brazil, where the Amazon rainforest mostly is. I remember meeting a new pastor at our local church and telling him my toy monkey had come all the way from Brazil to meet him, and that he had a prehensile tail. I demonstrated this by tying the monkey's tail around my arm. The interest in the rainforest led to an interest in environmentalism, because every book and movie I saw about the rainforest emphasized how fast it was disappearing and how many species were being lost.
After reading Silverwing I decided my favorite animals were bats. My Dad says I told him that my favorite animals were bats, cats and dogs, to which he asked "in alphabetical order?" This fit into my interest in the rainforest pretty well. My best friend shared my interest in bats and for the Halloween party at school, we both appeared as bats! She's the same friend who made me a twist tye snake at one point and started my whole thing of making twist tye creatures.
I also developed an interest in genetic engineering and at one point said I wanted to be a scientist when I grew up. The kind I meant was a 'mad scientist' who creates weird creatures for no better reason than curiosity and interest.
Somewhere around that time I started reading the book series Animorphs and became obsessed by it. I insisted that it was real, that Yeerks were real. My school decided to try to stamp out this interest, which only made it stronger. I suppose I must've scared them by insisting it was true, but I didn't really believe it. I just wanted to believe it.
I also had an obsessive interest in black holes, sparked by the song Cygnus X-1 by Rush. This also led into an interested in the beginning of the universe, but I disappointed by the lack of facts about how it actually began. And the idea of alternate universes really appealed to me. After awhile I dropped that interest, but came back to it from another angle after reading The Subtle Knife.
My interest in environmentalism broadened after awhile into an interest in world problems, and I obsessed for awhile on famine and war in Africa. Then when my school gave us a 'say no to drugs' drug education thing I became obsessed with drug addiction. I was being badly bullied and was pretty depressed at this point, and in general when I'm depressed I think about societal problems and other unpleasant things.
I also watched a movie, the title of which I can't remember, in which some aliens tried to kidnap children as pets. I latched onto that idea and made many twist tye stories about that. In all of them, unlike the movie, the children actually were captured and were trying to deal with that somehow.
I developed an obsessive interest in languages after awhile. I had a Bengali babysitter and learnt Bengali when I was 1 year old, but later forgot it. I also attended French immersion from Kindergarten to grade 6. After awhile I decided I wanted to learn various other languages, but never stuck with one long enough to really learn it - except Dutch, which my father urged me to learn because his ancestry is Flemish. I'm not really fluent in Dutch, but if you speak it to me in short statements I understand most of it. After awhile I developed an interest in endangered languages, and in reaction to reading Lord of the Rings I became interested in invented languages. Because my Dad is a computer programmer, I also was interested in computer languages for awhile.
In reaction to a Disability Awareness day at school, I developed an obsessive interest in disabilities. I wandered around with my eyes closed, sometimes waving a stick around, begged my mother to let me ride in a wheelchair whenever I saw one unoccupied (she never let me), borrowed the crutches my parents had gotten from the doctor when my mother hurt her foot and never returned (my father now uses them when his undiagnosed arthritis-like joint condition acts up), and learnt Braille, fingerspelling and a little bit of ASL. I lost interest in disabilities after awhile, then returned to it when my mother wrote an article about a glue-sniffing mother that discussed FAS and I decided to research FAS. This led into researching autism, and recognizing myself in Temple Grandin's writings about autism, which led into searching for more stuff by autistic people, finding out about the autistic rights movement, and eventually getting diagnosed autistic.
Also, I developed an interested in the Creatures series, started when my mother bought me Creatures Adventures. This also rekindled my interest in computer languages because you can create your own add-ons. And it fulfilled my wish to be a 'mad scientist', in a way, because you can genetically engineer (gengineer) the creatures in these games.

If I'd Had ABA

[Note: ABA stands for Applied Behavioral Analysis, a common therapy for autism that has some serious ethical concerns associated with it.]



I've been reading a commenting on a book about ABA treatment for autism, that I got free in a conference. I have also worked as an volunteer in an ABA program, and been the recipient of treatment from my teachers which differed from ABA mainly in being less effective at reaching the intended goals. (For example, they never grasped that being sent home from school when I misbehaved wasn't an effective punishment - it must be time-out from reinforcement, not time-out from constant conflict, in order to be a punishment.)

My autism was diagnosable around when I was 6 or 7 years old. (However, I wasn't actually diagnosed until I was 15.) Here's my suspicion of what would've occurred if I had received ABA therapy at that young age.

I would've been considered seriously non-compliant. My instinctive reaction to someone trying to control me is to fight them on almost everything. I even developed an aversion to using a tissue to blow my nose because it was so incredibly important to my teachers.

They would've put me on a program to encourage compliance. What they generally do, according to my book and the head of the program I volunteered at, is to increase rewards and start giving orders that are very likely to be followed. I would most likely have resisted those, developed an aversion to whatever rewards they did and refuse to obey any command of theirs even if it was something I wanted to do. If they told me to eat some chocolate I might've even refused, or if I obeyed it would be despite their command. (And I'd feel bad about it afterwards.)

If it was a reward that was only available when I complied - as is recommended - then I'd definitely get an aversion to the reward. In my mind, it would be linked to the power struggles. So anything I actually liked about it would probably be neutralized by them using it to reward me. This has happened with things the school got me to do, like skating. I used to enjoy skating before I went to school, but after a few times skating with my school I hated it.

If they followed the ethical standards laid down for ABA, I doubt they'd have ever gotten me to comply more than rarely. Letting them control would've felt worse than missing out on the rewards. If they used painful aversives, maybe they could have broken me. And I use the term 'broken' advisedly - it would've been the same psychological thing as breaking someone in torture. Indeed, ABA with painful aversives (such as the Judge Rotenberg Center does) is pretty much indistinguishable from torture. The few times I gave in, I held out in my mind, thinking intensely to myself about how much I disagreed and feeling very helpless and angry and disgusted. It was awful.

There might have been moments that were good. Moments where they seemed to become a different person from the one constantly pressuring me to comply. I know I was not myself when I worked in ABA. I had a fake persona of 'ABA therapist'. Some people say ABA makes kids robotic - I think the therapists are more robotic than the kids. (Ironically, behaviorism has no way to explain the behavior of behaviorists.) If the therapist ever let his/her mask down, I'd probably have treated them like two distinct people - the ABA therapist and whoever they really were, who'd probably be a nicer person, at least from my perspective.

Certainly ABA would not have helped me. But I'd have been lucky, because I would be more myself than most autistics who get ABA end up. I'm an idealist and a rebel, like Kestrel in The Wind Singer. Kestrel rebelled against the rigid rules of her town Aramanth, I rebelled against the rigid rules of my school. Neither of us bend - we stay rigid unless it's strong enough to break us. People say it's better to bend than break, but those who bend are damaged more by mild abuse. Those who don't bend until they break are less damaged by anything which isn't strong enough to break them, but more damaged if they are broken.

However, ABA generally requires parental consent. My parents were a major source of strength for me because they stood by my right to be myself, and didn't want the teachers to change me into their mold. So had I been diagnosed younger, I still might not have gotten ABA because I doubt my parents would have accepted their opinion that I had a problem. (After all, they didn't when my principal said I was AS when I was 12.) But if they had, I'd have known my parents agreed to this. I'd have known it was their choice. I might not have resisted then - after all, it's much harder to write off your parent than your teacher.

A Place Where I Belong

Later today, I will be attending a youth group for developmentally disabled teens. It's called Fusion Inclusion, it's an advocacy group run by SACL.
I've only been to one event of theirs - an end of year party. I attended it not sure what to expect and very afraid. I can get along well with severely disabled teens by putting on my 'child mode'. Not meaning any disrespect, the way I act towards children is much less condescending and superior than most people. I listen to them and am interested in what they think and feel, instead of acting as if kids can't teach me anything. With kids, the big focus is on what they're thinking, feeling and doing, whereas with adults I focus on myself and impress them with my knowledge. But with neurotypical teens, I either withdraw or extend a lot of effort to produce a very fake sort of interaction. I'm terrified of NT teens.
I was afraid these kids would be too NT for me to handle. The only teens I'd interacted with were NT or severely disabled, so I didn't know what to expect from mildly disabled teens. And I wasn't being a 'helper' or a bystander, as in every other interaction I'd had with other disabled people. I was one of the group instead of being set apart by status and role. I've never been one of the group - either I am set apart by status or by neurology. I assumed the other kids would be developmentally delayed non-autistic, too, so I thought I'd have little in common with them.
I arrived late, and they had left the meeting place, so we wandered around a bit before seeing a bunch of teens and young adults, some obviously disabled, walking together. I came up and asked if they were Fusion Inclusion, and they were. At first the only ones I spoke to were the leaders, who were adult and not obviously disabled. I was fairly quiet. But gradually I got drawn out by the others, enticed into interacting with them. And I didn't slip into my two most easy patterns of child-adult or adult-child interaction. Nor did I struggle, planning out each action before I did it. Instead, I acted naturally, more naturally than I act with either adults or kids (and that feels fairly natural).
And what really shocked me was that I belonged. Although not all of them were autistic, enough were that I didn't stand out. I didn't have to think about how I appeared, either to hide my autisticness or show it as a statement about myself. I just naturally acted myself - I stimmed, I acted clueless about some things and knowledgable about others, I peppered them with facts and listened to what they told me with interest. By the end, me and a guy with CP were running around putting ice cubes down people's shirts, especially the pregnant group leader who felt too hot. I even put ice cubes down his shirt. My parents came to pick me up and I asked if I could stay a bit longer, and my brother put ice cubes down people's shirts too. But I didn't need him as a social facilitator for me - I belonged there.
So two days ago one of the group leaders called me, telling me they're meeting again today. As soon as I hung up the phone, I squealed and flapped, grinning widely. I've done that periodically since, whenever I think about going to another Fusion Inclusion meeting. And I've been told it will be more regular now, it's properly starting for the year. Being with them is healing, it heals wounds that are so much a part of me now that I don't even notice how much they hurt until they hurt less for a bit.
[Note: this is my 100th blog post!]

Expectations and Hope

I'm at a conference about autism right now. Last night, a guest speaker about ABA gave his closing remarks, talking about raising expectations and hope for the future. Listening to him, I realized something. His whole idea of the kind of expectations you could have for an autistic child was fundamentally prejudiced.
There was no possibly of being autistic and living well in his view. The height of progress for an autistic, in his opinion, was when they came closest to the functioning of a neurotypical person. He viewed higher ability to function, as measured by speech, tested IQ, self-care, adult living placement - the usual - as synonymous with being less autistic. There was no place in his view for people like Amanda Baggs, who live well in their own home without testing high functioning on measures like speech and self-care. Or people like me, who are very much autistic but have no trouble speaking, minimal self-care problems, and a high tested IQ.
Contrast that with this quote from A Parents' Guide to Inclusive Education, published by the Saskatchewan Association for Community Living, which was being given out free at the conference.

"Myth #6: 'Your child is not ready to be included.'
Your child cannot 'get ready' to be in a regular classroom by being segregated from it. A child may never reach the 'level' of skill or behave the way that the administration deems as good enough. A child should not be discriminated against for not being the same as another child. Keep fighting for an inclusive placement. Your child has a right to be there."

Once, someone in the Schafer Autism Report said once (paraphrasing, because I can't find the exact quote - here's a reply to it) 'Suppose you were the person who, without treatment, was destined to spend your life banging your head on the walls of an institution, would you want someone speaking for you and counseling against treatment? No, I wouldn't either.' If I was in danger of being institutionalized and couldn't, for whatever reason, fight it myself, I wouldn't want ABA people fighting for me. They'd try to make me prove I'm 'capable enough' to get my rights.
Instead, I'd want the likes of SACL speaking for me. I'd want people who felt I deserved my rights no matter what my level of ability was, who felt that I could live a good life at any level of ability. I'd want people like Cath's mother in Does She Know She's There, who refused to institutionalize her severely disabled daughter when such behavior was standard. I'd want people like Amanda Baggs advocating for me. And (I'm lucky I can say this) I'd want my parents speaking for me, just as they did when my school wanted me to get Ritalin.

Survey about School Trauma

http://quibblo.com/quiz/bLLTxy/Emotional-Abuse-from-Teachers
I just wrote a survey to decide how common this stuff actually is. I'm planning to use the information from that survey for my book about School Trauma.
For those of you who haven't read my earlier posts about this, I was emotionally abused by my teachers. I think they honestly wanted to help me, but they kept trying to make me act normal and rearrange my thoughts and emotions to be more normal (which of course I couldn't do, not that I wanted to). From reading I have found this sort of thing is unfortunately very common, especially for neurological minorities, but no one seems to have written much about it. So I'm trying to fill a gap with my book.
By the way, I also have a yahoo group about school trauma. It's quite inactive, so I'd really like more people to join and start posting on it.

Resilience

The next Disability Blog Carnival theme is Resilience. I think I can write about that. Isn't resilience central to PTSD?
I don't think I'm a brave person, but my mother says I am, because I stand up for myself so strongly. But the thing is, I've usually been absolutely terrified as I do so.
I stood up to my teachers, refusing to submit when they tried to make me reorder my mind for their convenience. I fought the system any way I could. The thing is, I was terrified the whole time. It's just that giving in hurt worse than fighting back. That, and my hope that maybe I'll break down a barrier for the next person (or at least dent it somewhat). I don't know if my resistance is doing any good, but giving in sure won't.
I may have even stood up to my cousins when they sexually abused me. I suspect they pressured me into cooperating with the abuse - part of why I'm terrified of giving in.
Since I've left school, I've stood up for myself and others many times. I've advocated on the internet, even wading into the vicious yahoo group EOHarm to tell them they shouldn't be insulting autistics. (I was viciously flamed, but got several private e-mails from people who agreed or were at least more open to listening to me.) I've told advocates for the Judge Rotenberg Center how it really feels to be treated with that kind of force (although my experience pales by comparison to JRC). That's scary because I have to let myself feel pain in a situation which is most definately not safe. I've watched part of the hateful Autism Every Day video and wrote my criticism of it. (And felt bombarded by hate and had a terrible emotional flashback as a result.) I've told parents that their attitudes are harmful to their children, scared of being flamed but feeling such painful compassion for their children that I had to.
I've also 'stood up for myself' in harmful ways. I've yelled at my family and hurt myself. I even hit myself on the head with a glass bottle recently. I can't give in without rejecting myself, I can't accept that they aren't my enemy, I'm trapped. I've wished I could die or just disappear. I've felt that people would've been better off if I'd never been born. I've despaired of ever living a good life, achieving anything of worth or making a positive change for disabled people. I don't feel very resilient or brave.
I've fought the world alone because I don't recognize my allies or don't see them helping. I've wondered if I'm the only one who sees this (whatever 'this' is) as a problem. I've wondered if I'm stupid or overreacting to think it's a problem. I've wondered if everyone else is just nasty and mean or if there are any good people in the world. I don't feel very resilient or brave, but to keep fighting like this, I guess I must be.
And I've held on to hope. I've kept trying to recognize and find allies. I've kept hoping I can change the world for the better. I've kept trying to help the kids like me, who I feel such painful empathy for. I've kept trying to heal from my wounds even though I don't really believe I can heal. I've survived, although I don't know how brave that is because I can't bring myself to cause serious harm to myself even if I try.
[Edit: I thought of a good way to sum it up: I'm blazing my own trail because the standard ones are blocked.]

8 Random Things About Myself

David Hingsburger was tagged for this thing - 8 random things about yourself. You're supposed to post the rules, which are to let people know who tagged you, say the 8 random things about yourself and tag 8 people and let them know they've been tagged. He modified the rules so that anyone who reads his blog can tag themselves if they want (and post a link to their blog). So I tagged myself. Same modified rule applies here, so tag yourself if you want to.
1. Whereas many survivors of sexual abuse have trouble saying 'no' to things, I have trouble saying 'yes' (only when I'm having flashbacks). I feel like by saying 'yes', I'm giving away my power and giving other people permission to hurt me.
2. I suggested people read First Contact by David Hingsburger on this one CBC call-in for people to suggest summer reading.
3. I absolutely hate jeans, and never wear them. Once I had a big fight with my Mom because the only pair of pants I had to wear was a pair of jeans. Incidentally, I will aklso 'hide' articles of clothing I can't wear so they aren't counted as clothes in my dresser.
4. I used to sneak entire handfuls of icing sugar. I'd grab a handful and lick it all off my hand, then wash my hands. My parents never realized until I admitted, several years later, that I used to do this.
5. My principal suggested I was an aspie when I was in grade 7. My father described Asperger Syndrome to me and I replied that I didn't believe there was such a condition - if there was, I'd have it! It was pretty ironic when, several years later, I read accounts by autistic people on the internet and started recognizing myself in their descriptions.
6. I like to read articles in medical journals. I have read almost every American Journal of Medical Genetics volume our local university has - volumes 32 to about 86 or so. I may have missed some of them, however.
7. I'm currently working on more than 10 different books, most of them fiction. I'm working on two nonfiction books, one about autism and an almost-finished one about school trauma.
8. I used to be fluent in French because I attended two french immersion schools, but after I left school I stopped speaking French and now I can understand it fairly well but have difficulty speaking it. I'm thinking of looking into some way to get more positive associations with French and relearn it.