3.26.2009

Not About Bunnies and Fairies

Ann Bauer's most recent Salon article is about the recurring waking nightmare that is her adult autistic son's downward spiral into unthinkable violence. Please don't click through if you're in a tender or vulnerable emotional state:

http://www.salon.com/mwt/feature/2009/03/26/bauer_autism/index.html

This story affected me so deeply that I wrote my first-ever letter to a Salon article author:
Thank you for sharing this.

Like your past self, I put a lot of energy into emphasizing my autistic son's many, many positives. But he is only eight, and I have always been aware that his challenges may multiply. So, while your son's story initially had me vomiting with stress and fear about the future, I agree that it had to be told.

If parents of younger autistic children only hear success stories, and our children's paths follow your son's, then none of us will be prepared. We might even feel cheated -- or, cheated again, if we'd also bought into post-diagnosis cure and recovery hoodwinkery.
You have my empathy, and thanks.

Leelo is already a violent boy, though less so than he was this past winter. But he is also a young boy, with an unwritten future. I will continue to search for and celebrate the positives in his and our lives, while remaining aware that no one can guarantee an ideal outcome, not for any child.

More opinions:

Kevin Leitch at Left Brain|Right Brain
Kristina Chew at Autism.Change.Org
Emily Willingham

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6 comments:

  1. Hopefully as time progresses, understanding of what makes some people on the spectrum turn violent will be better understood and managed. I can't think of anything else to say other than my thoughts are with you.

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  2. The way she told her story is very powerful. I also agree with you in that this side of the story needs to be told as well as the positives so people HAVE the information. I hope for the best for Leelo.

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  3. Anonymous8:14 PM

    Thanks. I have a seven year old who is similar and had a similar reaction to the Bauer article. It is my worst nightmare, and the fact that we can't find adequate help (trained therapists, etc.) for love or money today remind me of that circling ambulance, waiting for an inpatient bed. I pray that what we're doing now might make a different future for him (along with simple chemical/genetic luck), but her story is my terror. I'm sorry I'm not alone in this, because it's hard, but I'm glad, in a way, to read your reaction too.

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  4. Very scary, very hard to read... But I agree, we need to see that side of things at least now and again.

    I find myself having to pry Jaymes hands off my neck (he does it playfully, jokingly) and tell him NO, because I'm afraid behaviors like that and hitting his sister could evolve into much worse things as he ages.

    I'm not glad I read the article, but I appreciate the importance of having read it.

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  5. It has taken me these last few days to gather the courage to read Ann's story. I was scared because Little Man is already so aggressive and difficult, that the future holds little hope for us. It isn't that I am not still scared, I am, but somehow I feel a little less alone.

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  6. I forced myself to read not only Ann Bauer's piece (as I've read all her previous pieces on Salon), but the 20+ pages of comments. Only a handful, I'm sorry to say, were thoughtful, or compassionate, or from fellow travelers. Even taking into account that Salon commenters are in general a pack of hyenas, I'm glad I waded through all of that ignorance and vitriol (including a surprising, to me, amount of mother-hate, some of it coming from self-identified auties and Aspies), because it just reinforced how much this particular wound needs exposure to air and sunlight.

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Respectful disagreement encouraged.