Thursday, September 24, 2009

I've got a problem with it...

I try to stay out of most of the political stuff related to autism if at all possible. It's not that I don't have an opinion, it's just that it seems like a distraction from the tasks at hand: 3 kids, 3 schools, IEP meetings, autism waiver, special hockey, homework, girl scout cookies... you get the picture.

Sometimes, though, it's just so over the top that I can't look away and move on. The Autism Speaks video above falls in that class. I could go through and refute the claims made about autism (I think my marriage is holding up well, I pretty much always get a good night's sleep...), but that's not what really bugs me. The real point isn't the generalizations given at the beginning of the video, it's the attitude that as long as someone is autistic, their lives, and the lives of those that interact with them, are a disaster.

As I said in previous posts, msk is definitely not "mildly autistic". He's not able to pass for normal and he has a lot of difficult behavioral issues. My family's life is significantly affected by his disability. Nobody who has met us would say that his is not "really autistic". Does this mean that I think of our lives as a disaster? Not at all. I love msk to his core, and as far as I can tell, that core is autistic. I love his impossibly intricate pictures that he can draw only because he looks at the world in a different way. I love his unwavering focus that is beyond anything a neurotypical could manage. I love his totally honest emotions - I'm never unsure about how he feels. There's much more in that vein, but I think you get my drift.

The first half of this video is permeated with negativity towards our current life. The goal espoused is to be different. The way I see it, is life is the journey, not the destination. With a focus on being "cured", everything msk does is now (when he's clearly not "cured") is wrong and depressing. That attitude requires constant corrections, without joy about his specialness, which is hard on him, and I think, just as hard on those working with him. One behavioral tech, working with my son for over a year, has never once talked about any positive aspects of msk beyond behaviors that she has changed. I really don't see how to keep productive work going with this attitude.

I feel bad about slamming this video because it shows the worst side of Autism Speaks, and not everything they do is negative. On the positive side they have a lot of great resources on their website. They provide support for parents, and a unified purpose and that purpose reduces isolation. But as the wave of autistics grow up, the autistics' perspectives must be considered. Even though msk doesn't talk a lot he knows and listens when people are talking about him. When this discussion is negative it hurts him. This video is hurtful, and just as I want to protect him from hurtful statements at school, I want to protect him from this video.

I guess when you come down to it, that's the problem that I have with it.

1 comment:

  1. Autism speaks have taken the video off their website (but not You tube) so at least they have listened as there are so many people with a problem with it!


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