Wednesday, June 25, 2008

Your Octagon Daughter

You see me staring at your daughter, your octagon daughter, and glare at me. You think I'm looking out of pity, disgust, or morbid curiosity, the way you'd stare at a car crash. Maybe I'm thinking 'poor little thing' or maybe 'why have people like that out in public?' That's what most squares think when they stare at your daughter. That's what you expect them to think.
But my look is not of pity or disgust, but loneliness mixed with joy. I sit there, fighting between my loneliness and my fear of being judged by people who, like me, have been treated harshly by society. Because you can't see it, but actually I'm not a square. I'm a triangle.
And even though triangles and octagons are more different than triangles and squares or octagons and squares, in some way we're alike, your daughter and I. Because when squares are everywhere, and square is treated as the proper way to be, anyone who isn't a square has something in common. We're all considered broken, we're all the exceptions to the rule.
And even you, in your glare, are confirming square rule. Anyone who looks to be a square is assumed to be one. I doubt you even realized I might also be different. After all, my right-angle corner looks like it could be a square's corner. And that's what everyone sees. They expect to see a square, and a square is what they see. Your daughter has no right angles for people to be confused by, but I do.
So I sit, and watch your daughter. And then you glare at me, with that protective glare, and not knowing how to explain, I simply walk away. But I wish there could have been more. I was glad to see that not everyone there were squares, and I wish you could've seen that too. Above all, I wish you hadn't been trained to expect hurtful square looks. Just as I wish I hadn't been trained to expect hurtful square replies.

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Monday, June 23, 2008

Causation and Affected Siblings

There are three basic ways a condition can be caused:
a) genetics
b) physical environment (diet, injury, etc)
c) psychological environment (parenting, school experiences, friendships, etc)

A lot of people, however, narrow it down automatically to genetics and parenting (nature vs nurture) with 'psychiatric' conditions.
And many of those people also use illogical arguments regarding the presence or absence of similarly affected siblings. It's most commonly used to rule out a cause. But I've heard people say it must be genetic instead of due to parenting because the child's siblings are unaffected, and I've heard the exact opposite.
The truth is that whether or not siblings are affected doesn't really tell you about family-related causes, of which both genetics (excluding random mutations) and parenting are included (and people so often forget that not all conditions are caused by either of those two). Both of those tend to make siblings more similar, but can also account for differences between siblings. The only way to distinguish parenting effects from genetics by studied affected status in siblings is to use twin or adoption studies, and even those don't rule out parenting effects (with twins, identical twins are often treated more similarly than fraternal twins, and adoptive parents may raise a child differently based on what they know of the child's biological parents). The presence or absence of affected siblings doesn't tell you whether it's more likely to be due to genetics or parenting. All it does tell you (and this is not absolute) is how likely the condition is to be due to familial as opposed to nonfamilial effects.
Here are some examples:
A boy is severely depressed, extremely shy, flinches at sudden movements, and doesn't play with other children. His siblings (all brothers) are all apparently normal. The boy I'm thinking of is David Peltzer, author of A Child Called It, whose condition was due to parenting - despite having unaffected brothers. His condition, PTSD, was due to having a sadistic mother who picked one child as a scapegoat and doted on the rest. His brothers actually weren't completely unaffected, but their problems were milder and less obvious, since they were witnesses to violence rather than victims (except for one boy, who became the new scapegoat when David was put into foster care).
A boy is developmentally delayed, hyperactive, and bites his hands when nervous. He talks fast, with odd stressing, and gives strange tangential replies to questions. He has an unaffected brother and sister. This boy is a made-up kid, although I'm sure someone meeting his description exists. His condition, Fragile X Syndrome, is an X-linked genetic condition that his mother carries. His brother didn't inherit the same gene. His sister may have, but if she did, she's an unaffected carrier like her mother - or at most, a mildly affected Fragile X girl who may not be recognized as different, especially compared to her obviously disabled brother.
And then there are the myriad examples of similarly affected siblings, either all raised the same way or all inheriting the same genetic trait. And even more examples of families where two or more siblings are affected but at least one isn't. With genetics, this can be due to not inheriting the same gene or differential effect of the gene due to other genetic traits such as gender. With parenting, this can be due to parents' different reactions to a girl rather than a boy, a first-born child instead of a second-born child, a child with one temperament instead of another, or many other factors. For example, a common pattern in families with a sexually abusive father is for unaffected boys and girls with PTSD, because most male sexual abusers prefer to abuse girls.
If you are theorizing about the causes of a condition, stop assuming that affected or unaffected siblings tell you if the cause is genetics or parenting. Both causes of conditions are compatible with both affected and unaffected siblings.

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Tuesday, June 17, 2008

Letter to Tony Attwood About Cassandra Syndrome

Here is a letter I just sent to Tony Attwood:

"I have read that on October 22-23, 2008, you will be speaking at a conference about marital relationships and Asperger Syndrome, including a discussion about 'Cassandra Affective Deprivation Disorder'. The inclusion of NT spouses of AS individuals, but no married AS individuals, on the panel is especially problematic.
I hope you will make it clear that marital problems are not solely the fault of one person simply because they have a neurodevelopmental disability, and that intolerance, failure to understand and failure to accomodate differences on the part of the neurotypical spouse is a big source of problems as well.
Except in cases of spousal abuse, marital problems are always the 'fault' of both partners. Asperger Syndrome causes social differences and other differences, but unless the AS partner has co-morbid abusive tendencies (which are probably equally common in AS and NT people), the AS diagnosis does not mean they are at fault for the marriage breakdown. There are many AS/AS marriages which do just as well as NT/NT marriages. The problems that AS/NT marriages can have (which are not universal or insurmountable) are that the two partners have a very different way of relating. This is no more the fault of one partner as opposed to the other than a communication breakdown between two monolingual people who speak different languages. They simply do not understand each other.
Due to negative experiences, AS partners may be more likely to be very sensitive to criticism and have low self-esteem, but NT partners are more likely to be prejudiced against their partner's cognitive style and be less able to compensate for neurological differences (AS individuals have a lifetime of practice).
For an NT/AS marriage to work, both partners must work to understand and accept each other, as well as ask assertively for what they need in the relationship. Blaming relationship problems solely on one partner, as the Cassandra Syndrome concept does, will not help that. Very often, the AS person is already exerting much more effort to accomodate their NT partner than vice versa."

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Saturday, June 14, 2008

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.
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."
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."
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."
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."
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.

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Friday, June 13, 2008

'Take It One Day At A Time'

I so often hear parents of disabled kids advised to 'take it one day at a time'. Don't worry about the future, only deal with today.
This is generally in response to parents despairing and panicking about their child's future. If you're too worried about their future to function or look after your child today, that's not a good thing. But as a long-term pattern, 'taking it one day at a time' is not good either.
If you take it one day at a time, you never get to prepare. Each new issue comes completely unexpectedly. When it's time for your child to go to school, you have no plan to help them fit in that setting. When they move from elementary to high school, or some transition like that, you haven't prepared them for it. When they graduate, you have no plan for after graduation. When you die, you leave behind no guidelines or safeguards for their needs.
If you are the parent of a disabled child, you can't just take it one day at a time. You need to think ahead. For example, one OT talked about starting to work on skills needed for driving with a 14 year old learning disabled teen, because in two years, he'd be wanting to get his license. You should do similar things. Don't panic, just think 'what can I do now to make this upcoming issue easier for my child?'
For example, you could check out potential schools for your 3-4 year old to go to Kindergarten in a few years. Talk to the teachers, watch the classes in progress, take your child for a visit if you're strongly considering it. And you can work with your child, to get them ready. Explain to them what school is about and what it'll be like for them (even if they have little verbal skills, they might understand it). Work with them on specific skills for school, especially things like not aggressing towards other kids, dealing with being away from you, etc. If they really aren't ready to learn what you're teaching, don't push it, but just showing them it may help them figure it out later. You might even want to enroll them in preschool or some other day program, especially if it has a reduced schedule compared with Kindergarten so it's less of an adjustment.
If you realize there are systemic barriers in place that will adversely affect your child, you can work on those before they actually get in your child's way. For example, if your child uses a wheelchair, and the school you're considering is not completely accessible, you can start lobbying and fundraising and such before your child even enters the school. I know one parent who started trying to get her child's school playground wheelchair accessible when the girl was in her early years in that school. A few years later, she was in grade 5, no longer into playing on playground equipment, and that playground was still not accessible. Had her mother started earlier, maybe she could've gotten to play in her school playground.
Taking it one day at a time helps dampen your worries, but you can't prepare for things. If you plan ahead, your road will be easier.

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Sunday, June 08, 2008

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.

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Sunday, June 01, 2008

Religion and Morality

I remember reading a story by a Christian woman who had an ADHD son. At one point, she said that she'd read that ADHD kids were more often abused, and she could believe it, because if it weren't for her religion, she'd have abused her son.
As an atheist, I was deeply offended. If that's really true of her, I'm glad for her son's sake that she's a Christian. But I don't need to be afraid that some diety will punish me in the afterlife to avoid hurting a child. All I need is an awareness of how my actions will affect that child. The thought of breaking that child's trust, betraying that child and the pain it would cause, is enough to make me think I shouldn't abuse that child.
There's this stereotype among many Christians (and probably people of other religions) that you must be religious (preferably the same religion as them) to be a caring person. I could point at the religious people who do terrible things - the sexually abusive priests, the people who ran the Inquisition, etc - but many people claim those aren't really doing what God wants. Instead, I point to the people who don't sin, who in fact do good, but only because they want to be in heaven instead of hell. How moral is it really, to act good only for a reward?
If I knew for a fact that I'd go to hell if I didn't torture and kill a child, I would hate the God who set that rule, and feel that the moral thing would be to disobey Him. (I can't promise I would disobey him, but my idea of an ideal person certainly would.) But in the Bible, God allegedly told someone to kill his favorite son, and the man was about to carry it out when God said the equivalent of 'just kidding'. God was 'testing this man's faith', apparently, and the lesson is to trust that God knows best even if you really don't like what he's telling you to do. I'm not willing to give anyone that kind of power over me. (Certainly not the ordinary human beings who claim to speak for God.) I don't think someone so easily led into disobeying their own beliefs is a good person.
And those people who avoid doing something they want to do only because they think they'll get punished - they often don't really avoid doing it. They do it in secret, or they do borderline things which they excuse by emphasizing the differences (or simply deny). The first is not feasible if you really believe you've been told what to do by an omniscient being, but the second option is very likely to be done by devout believers who obey only because of heaven and hell.
So maybe that ADHD boy was being abused after all. Not by being hit or made to do sexual acts, but by his mother's looks, her comments, her rules, her body language. If a child has been taught, by their parents' behavior, that they are bad and don't really belong in their family, then they have been abused - even if such teaching is not deliberate. And you can't avoid that abuse just by thinking you'll be punished for it. You avoid it by cherishing your child, by working with yourself to avoid feeling so angry with them, by learning to enjoy being with your child.
Sadly, it's considered normal for parents to dislike spending time with their children. My father is excited when he has time off work to look after us. My mother misses us if she goes away to a conference without us. But recently I saw a joke in which a 6 year old boy who had two older brothers was asked what his mother did all day since he entered school, and said 'cartwheels' (turning cartwheels out of joy, because she doesn't have to look after him all day anymore). Children are considered a burden, worthwhile mainly because we grow up into 'real' people and can look after our parents in their old age. Parents say 'I wish you have a child just like you someday, so you know what it's like' and mean it as a curse instead of a blessing.

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