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.

Labels: , ,

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.

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.

Labels: , , , , ,

Saturday, December 29, 2007

When My Autism Gets Too Big

[second post today]
I recently found a book my parents got me for Christmas a couple years ago which I really hated. It's called When My Autism Gets Too Big. I thought it could be very useful had they not described it as the child's 'autism' getting too big, but as it is I don't want any autistic child reading this book with the idea of using this to help them.
It reminded me a bit of the common practice among parents of autistic children of referring to a meltdown or something similar as an 'autistic moment'. I protested that once on a listserve for parents of autistic Down Syndrome kids, but was not able to describe the biggest problem with it.
I act more or less obviously autistic at different times. Sometimes I'm upset and self injure, speak repetitive phrases or can't talk. Sometimes I'm happy and I flap and trill. Sometimes I talk intelligently and pedantically about rare syndromes to a person I've just met. Sometimes I avoid looking people in the eye and don't react when they greet me. Sometimes I act fairly normal, sometimes I act autistic in one of the myriad ways that autistics tend to act.
All this time, the underlying autistic cognitive style I have is the same. I'm just in different situations, feeling different moods, making different choices. NTs are not judged more or less NT depending on whether they're chatting with their friends, studying a subject they're interested in, taking a break to listen to music they enjoy, crying or yelling at someone or both, or really excited looking forward to something fun. They're just acting the way that person acts in that circumstance.
And so many autistic children don't really understand what autism is. If you watch videos about 'recovered' autistic children in which they're asked what autism is, a common reply is to demonstrate some of the stims they used to do. 'Autism is flapping your hands like this.' Studies have shown that siblings of autistic children tend not to understand autism very well - for a variety of reasons, autistic children likely have an even poorer understanding of autism than that.
And I hate the idea of a child who doesn't really understand how they are different associating 'autism' with being overloaded. If they think that's all autism is, they will not understand why they have such different likes and dislikes than the other children, why the others don't make sense to them, and why they are so good at some things and not others. If so, what's the benefit of the diagnosis for them?
The biggest benefit of being diagnosed autistic for me, and many other older autistics, is increased self-understanding. But we can search out and understand the information out there about autism, and think critically about it, and keep looking for our answers. Autistic children often can't do this. Their only source for understanding autism is what the adults in their life choose to tell them. And if what these adults choose to tell them is just associating autism with overt behaviors or specific moods, then their diagnosis gives them no help in the difficult task of understanding themselves - a task already made difficult by the pervasiveness of the NT perspective and lack of discussion of the autistic experiences.
I wish they'd taught kids to think of it as, if not overload, then 'too much X', like the standard 'too much birthday'. NT kids, when they are overloaded, are not told that their 'allism' has gotten too big. Instead, people say they've had 'too much' of whatever they were doing. Don't tell autistic kids that autism means overload or stimming or something like that. Make it clear that autism goes deeper than that.

Labels: , ,

Friday, August 10, 2007

Why do Holidays Have to be the Same For Everyone?

The current disability blog carnival, #20, is themed On Holiday. This is my blog entry on this topic.
A sibling of a boy with lissencephaly, a brain anomaly causing very severe cognitive disability, cerebral palsy and seizures, said the following about his brother:

"Tomorrow is my brothers birthday. He will be 7-years-old. We bought a caramel cake, but he won't be able to eat it. He will have 7 blue candles on his cake, but he won't be able to blow them out or make a wish. He will have birthday presents wrapped up in wrapping paper, but he won't be able to unwrap them."

This is a common complaint by family members of developmentally disabled people, it seems. I've heard plenty of parents complaining that their child doesn't understand or enjoy a holiday or doesn't do it 'right'. This is viewed as a sad thing and a source of frustration. Very often they keep doing it the conventional way, hoping 'this time' their child wil react the 'right' way. In fact, higher functioning children may be expressely taught 'social skills' related to how to act on holidays, such as 'open all your presents and thank the gift-givers before playing with your new toys.'
But why should they do it that way? What are holidays for, anyway? Really, most of them are all for being with those you care about, getting a break from everyday stresses and having a good time. When the disabled child and/or their family is getting stressed out by the holiday, it defeats the purpose. If your child doesn't like standard birthday or Christmas presents, for example, don't buy them. Get something your kid likes, even if it is a string to twiddle with or a shiny ribbon to wave around. Why waste money getting something your kid probably won't want?
In general, if you go away from the idea of holidays and 'having to be' a certain way, you can find ways to fully include the disabled person. I was anxious about having an 18th birthday where the only guest was a 10 year old severely autistic kid because it 'didn't fit how birthdays are supposed to be' but I did it anyway. And I had great fun, even though my guest spent all his time watching fans and didn't eat any birthday cake. Even though I was focused more on his enjoyment than my own. I had fun doing interactive fan-stimming, playing tin whistle to him and chatting with his mother. If, instead, I'd tried to have a 'standard' 18th birthday, I'd have had to invite strangers or distant acquaintances, because I don't have any friends my own age. I'd have had my birthday invaded by NTs who'd expect me to fit in. I'd have ended up on the sidelines, watching everyone else have fun and waiting desperately for it all to be over. And that's a best-case scenario.
What about if I just didn't invite anyone, because I don't have any 'standard' friends? Well, I did that for several years, and I found that birthdays didn't feel very special - almost like just another day, except I got a nice treat and some new things. It was nice, but I wanted more. I wanted a memorable, special occasion for a birthday party. And I got one, but it was not a standard 18th birthday.
In general, this is just another application of a general thing - you should change how you do things to fully include your disabled child, rather than trying to force-fit them into the standard. The same principle applies to teaching, playing, discipline and numerous other things. Why must they do it the standard way? They aren't standard people, and that's just fine. Put them in the round hole, not one of the square ones.
[Edit: Unfortunately, I didn't notice that the Blog Carnival #20 is already over! Oops!]

Labels: , , , , ,

Monday, February 19, 2007

Sirens and Autistic Siblings

I read an article called Sweet Surrender by a parent of an autistic boy who compared neurodiversity activists to 'sirens' urging people to give up fighting for their children. I tried to reply, but something was going wrong with my account so I couldn't.

I personally know several autistic people who have serious difficulties with communication and self care. One boy I know communicates mostly by pointing and grunting, sometimes using a picture communication device and sometimes signing a few words and very occasionally saying words like his name. A girl I know runs around saying words and phrases which are only loosely meaningful and she runs into trees and people because of motor planning problems. I take this girl swimming and she can lift her arm and leg and sometimes pull her pants down but otherwise can't dress or undress herself. I also worked with another girl who in reaction to a change in routine, started screaming and banging her head and when I tried to stop her from hurting herself she bit me very hard. All three of these people are on the autistic spectrum.And all three are wonderful, unique people. If I could cure them of their disabilities with no side effects, I wouldn't, because they wouldn't be the same people.I'd like people to stop equating the kinds of needs and problems people like my friends have with being defective people who need to be fixed. And it's not that they have some special talents. If they have such talents, they are not very easy to observe. But all of them are special people with their own kind of beauty.I am in favor of helping these people. The girl who bit me lives in a foster home with at least three other disabled kids who need a lot of attention themselves, and her foster mother is very overworked and stressed. She doesn't seem to have enough support to care for the children in her home. Also, I would love for them to be able to communicate more. If that girl could've said 'we need to use the other dressing room, I'm not used to this one' she'd have been less likely to hurt herself or me. The other two aren't aggressive or self-injurious, but they understand a lot more than they can express and it must be frustrating to be unable to tell us what they're thinking, especially when they need something.Also, I don't see how it's any easier to accept your child than try to cure them. I used to think there was a big difference between mildly autistic people and severely disabled people, and that of course we don't want severely disabled people. When I challenged that and became more accepting of severely disabled people, it became painful to read discriminatory things that I used to be fine with. A parent who decides their child needs to be accepted for who they are will find it harder to deal with the well-meaning people who want to change their child. Also, what supports there are for disabled people often come in packages that require people to deal with a lot of discrimination. Besides, it is hard to accept that you have been discriminatory, especially if it has hurt someone you care about. If you are disabled, accepting yourself makes it easier, but if you can blind yourself to discrimination and have it not hurt you, that is easier than fighting it.

Also, my Mom found a New York Times article called Her Autistic Brothers, about a 14 year old with autistic twin 16 year old brothers. A lot of the article is pretty good, but there's some parts I don't like:

"Because of the particular challenges of autism, siblings of children with the disorder tend to have a harder time than siblings of children with other sorts of special needs: they enjoy fewer positive exchanges with their brothers or sisters and show more behavior problems themselves. Fewer positive interactions might simply follow from the fact that the disorders on the autism spectrum are characterized by social deficits — from difficulty with eye contact and absence of reciprocity on the milder end to total lack of speech in severe cases. But it has also been shown that typically developing children have trouble forming a concept of autism, which may itself have an impact on the way they relate to their siblings."

Firstly, it's far worse to be a sibling of a kid with rages. I've been a foster sibling to two kids with psychological issues who both had rages, and the effect is similar to being a child living with spousal abuse. Even if they don't mean it and you know they don't, it's hard to deal with someone who is screaming insults and maybe even physically attacking someone.
Secondly, autism doesn't cause social deficits, but rather social differences. Autistics tend to need more alone time and have an odd pattern of interacting. If those are dealt with well, an NT sibling can have plenty of good interactions with an autistic child.
In general, I think this article doesn't address the issue of how the family deals with the disability. I can certainly see how it would be hard to be the NT daughter of Alison Tepper-Singer (in the Autism Every Day video) and her kind are far more common in the autism community than other disability communities. I bet it's much easier to deal with a disabled sibling if you are told they have 'different genes, same value' (a slogan I saw on many advertisements by the Canadian Down Syndrome Society) than if you are told it's a living hell to have to deal with someone like your brother or sister. And it's not just the (very real) differences between autistic kids and Down Syndrome kids. I've seen it in families with children with rare chromosome anomalies. If the condition is associated with autism but the behaviors aren't recognized as autistic, they seem to be more accepting than if they know the condition is associated with autism. I think it's that the culture of the mainstream autism community is so vicious that if you buy into what they say, it makes it much harder to cope.
In terms of forming a concept of autism, I saw an excellent book called All Cats Have Asperger Syndrome. It describes Asperger Syndrome with pictures of cats on each page. For kids who are familiar with cats, that kind of book seems like it would be a great help. But it seems to me that if you simply explain to the kid why their sibling is acting oddly in numerous 'teachable moments', they could easily get a pretty good understanding of autism.

"In the car, they demanded that their mother make only right turns — left turns or driving in reverse would provoke screaming fits. “We were complete prisoners,” Jennifer says. “We couldn’t go anywhere.” She remembers one time, after the boys tore up the house yet again, that she just sat down on the living room floor and sobbed, with Tarah by her side."

This is an example of the problem. I can't think of anyone among the people I've known whose kids have chromosome anomalies with an unrecognized association with autism who described themselves as prisoners of their children. This seems to be something about the autism community. It almost makes me feel like I should avoid telling these parents what their child has in common with autistic kids, but I hope if I tell them the right way they'll find the better part of the autism community - the part that is dominated by autistics themselves, and some parents, especially autistics with autistic kids.

Labels: , , , , , , , ,