Friday, April 22, 2011

Aware of What, Exactly?

Often when I tell someone that my son has autism, they tell me a story. They tell me the story of who they’ve met (or heard of) who has autism. I understand -- they are sharing their experience, and their experience may be limited.

That’s why the story they tell is always about a person with unusual skills or abilities who has triumphed. Sometimes, lately, they speak of Temple Grandin and the movie about her on HBO or James Durbin, the American idol contestant who sings like a house on fire.

These recountings remind me of rags-to-riches mythologies. Everyone knows tales of lucky people whose gifts and hard work took them out of the ghetto. But for the majority of people who are struggling with poverty, that is not going to happen. Careers like basketball stardom or making pop music are not real options.

When “Autism Awareness Month” became the talk of the town, I asked myself, "What do I want people to be aware of?" And my thinking returned again and again to these well-meant, supposedly inspirational stories. I want people who may never be personally touched by autism to understand: It isn’t about savant skills and prodigious talent. It is far less romantic.

My son will not play concert piano, and he will not be a math prodigy. He cannot paint great art and he cannot remember dates and train schedules to the amazement of all. And the truth is, after almost 10 years of autism awareness, running a parent group, and working as an advocate and an author, I've never met that kind of child with autism. The hundreds of children I meet have much more in common with my son than these media-friendly whiz kids. Gifts like that are terribly rare. 

I don't think about whether or not my son will go to college (although some children with autism may). I hope he will find kindness throughout his life. I hope we can find meaningful work for him, and I hope he will have a safe place to live. I hope my daughters won't feel burdened or unable to help him because they will be called upon to do that during their adulthood. And I hope that their children, my grandchildren, are not born with autism, even though 1 in every 110 children are, and the number is growing.

As a problem that exists on a spectrum, autism causes a variety of outcomes that all fly under the same flag. But the notion that children at any level of impairment will outgrow or overcome autism is one of the most persistent and problematic fairy tales going. The reality is that many, many of our kids have and will always have a serious form of autism. It will affect every single moment of their day, it will never quit. The impact is big and immovable. There is no known medicine, diet, therapy, or love that can change that.

That’s why awareness is important. So that people behave kindly when they encounter fellow citizens who are affected by autism or help financially where they can. 

I admire my son every day, because I know that if I had to carry his load I might be cranky, mean, or mad. But he is not. He is unfailingly sweet, full of fun, and ready to try anything because he loves adventure and trusts his parents to keep him safe.

God willing, I'll live to my own Grandmother's age of 103 to keep doing just that.
About the Author:

Susan Walton is the author of "Coloring Outside Autism's Lines," published by SourceBooks, Inc., which encourages families to embrace and enjoy life when a family member is affected by autism. She is the parent of an adventure-prone child with autism as well as a set of twins who are not far behind when it comes to searching for fun. She runs the Peninsula Parents of Special Needs Kids group in Northern California and is on the Board of the Best Day Foundation, an organization that provides outdoor adventures like surfing and snowplay to kids with special needs. 

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