AAM Guest Post: Aware of What, Exactly?

I am pleased to have Susan Walton, author of Coloring Outside Autism's Lines and mom of two guest blogging here at Acting Balanced today.  I also had the pleasure of reviewing Ms. Walton's book and also offering it as a giveaway prize.  Thanks for being a part of our Autism Month here on AB!

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 own 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.

When “Autism Awareness Month” arrives, I ask myself: What do I want people to actually be aware of? And I return to these well-meant, 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 and it is not reversible.

It is something like extreme poverty. Everyone can point to a lucky few whose gifts and hard work took them out of the ghetto to a better place. But for the majority of people struggling, that is not going to happen. Careers like basketball stardom are not real options.

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 impaired children outgrow or overcome autism is one of the most persistent and problematic ideas going. The reality is that many, many of our kids will always have a serious form of autism and they do not play the piano or invent useful things. It will affect every single moment of their day, it will never quit. The overall 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 can behave kindly when they encounter those affected or help financially where they can. 

I admire my son every day, because I know that if I had to carry his load I'd be cranky, mean, and 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.