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.

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Blogger Maddy said...

I've been following both these issues myself, but unlike you I tend to duck and cover when things start to get 'nasty.'
I particularly liked the article about the girl with two autistic brothers [a bit close to home.] I just hope that my girls can do as well
Best wishes

5:55 PM  

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