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[personal profile] rayjwinteraven
Something that people will need to decide is if it is a trait, or a disease.



When I started on this journey, learning more about Aspergers Syndrome, Autism was just the documentary I saw, a non-verbal child coiling up into a knot, focusing on cars and toys and the humans around were nothing at all. The child's parents were striving to bring their child out of his world and into theirs, but his world didn't include them, so it was hard. Autism, from that documentary, is people locked into an animalistic isolation, kind of like having a rhinoceros in your living room, and you get to try to teach it how to use a litter box.

It seems to me that that's what Autism Speaks sees, when they think about autism. They're striving for a cure, to prevent anyone else from ever being born on the spectrum. Their board of directors does not have a single autistic representative, at all. Jenny McCarthy, promoted on the Autism Speaks website, has said that when her son developed autism, she could tell because "the soul's gone from his eyes."



Consider this, from <http://www.cnn.com/2007/us/09/24/jenny.autism/index.html>

I looked at Evan and saw him flapping and once again had my heart shattered. I had always looked at it like an adorable Evan characteristic, so cute and unique that I even called him my little bird.

I almost felt betrayed, like I didn't know this child standing in front of me. Everything I thought was cute was a sign of autism and I felt tricked. I guess the doctor sensed this from me because he turned my head back toward him and said, "He is still the same boy you came in here with."

No, in my eyes he wasn't. This was not Evan. Evan was locked inside this label, and I didn't know if I would ever get to know who Evan really was. All the behaviors I had thought were personality traits were autism characteristics, and that's all I had. Where was my son, and how the hell do I get him back?


I think I agree more with the doctor. Evan has his own way of doing things, just like Temple Grandin, high functioning autistic whose distinctive way of looking at things can help society in some very real ways. Dr. Grandin doesn't want a cure for autism; "If I could snap my fingers and become nonautistic I would not do so. Autism is part of who I am." There are things that she feels are important; she "advocates early intervention to address autism, and supportive teachers who can direct fixations of the autistic child in fruitful directions." Both quotes are from <http://en.wikipedia.org/wiki/temple_grandin>, but they're affirmed in other web sites, including her own.

What's the saying, "Think outside the box"? What else is autism? Society has spent so much time and effort molding each of us into a lovely carbon copy clone through the education system. We have one language for communicating - one way to behave, one model of morality, one path of socially acceptable. I want to write "Shipping/Receiving" above the public school doors. Children are taught to instantly comply with authority and to use peer pressure against those who don't. They are gathered into a cohort which does not typically interact with other cohorts even at recess, according to Sparrow's kindergarten teacher who'd observed her students for twenty years. How are these children supposed to grow up into people who can truly, genuinely, 'think outside the box'? They've never seen anything except the box walls!

Autism Speaks would place each person born on the spectrum firmly within these little boxes, so they were completely identical. In some ways, it is a blessing, because you don't have to try anymore, just copy everyone else. I believe that's what's happening for some; I don't have statistics, but I've been told by a man who works with young people on the spectrum that a high percentage of his clients are unemployed or under-employed, when they were so brilliant at a younger age.

We don't make the time for kids who are not readily converted into carbon-copy cohort elements, but they are the future. We have made some good strides in science and military and the like, but we're still completely failing to create a society that prides itself on something other than buying and consuming and producing so others can buy and consume. That's the model established by the schools, and that's the culture being produced.

I reject this model. I have to teach my kids how to move within it, knowing we are aliens in a strange land, but I don't think we'll ever properly belong to that system. I can only hope that society will grow, to allow uniqueness, and that I can learn on my own how to nurture and develop the independence of thought in my kids.

Date: 2009-04-14 11:28 pm (UTC)
From: [identity profile] binsk.livejournal.com
I can only hope that society will grow, to allow uniqueness

I don't think society will, or that it can. It's extremely difficult to get a whole group of people to be able to coexist peacefully under the best of circumstances. It's stressful for us to be around people we don't understand or relate to, and we tend to gravitate toward people like ourselves for relief and community. People who stick out tend to attract attention, some of it undesirable. I think that's hardwired in our brains, and it's very hard to override that instinct to become tolerant.

Date: 2009-04-15 05:49 pm (UTC)
From: [identity profile] sylrayj.livejournal.com
I have to hope that you're wrong - that society will understand that it can remain clones, with individuals to fill the nooks. There *are* gaps, there *are* places where the norm doesn't manage to complete the picture. I think we need to help the unique people find their place, and we need to acknowledge that the same way we've been shaped to suit society, they will need to be shaped to work beside the rest.

We're learning to disregard skin colour, gender preference, and gender; it'll take some work but I think we can learn to cope with uniqueness too. :)

Date: 2009-04-15 05:52 pm (UTC)
From: [identity profile] binsk.livejournal.com
Don't get me wrong, I hope I'm wrong too. I expect little from people's generosity and good nature, but I hope for the best.

Date: 2009-04-15 07:46 pm (UTC)
From: [identity profile] sylrayj.livejournal.com
I can appreciate that. You've had to make yourself fit in, too, haven't you? We need to make it better for all of us.

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