THE BLOG

Why I Can Never Die: Autism and Aging

04/26/2009 05:12 am ET | Updated Nov 17, 2011

You think wrinkles and gray hair are the scourges of aging? Try imagining your child with autism as an adult and at the mercy of a state run home, an institution or even prison while you're slumbering away in a pine box.

I'd be happy to look like a Shar Pei if I could stop worrying about what is going to happen to my girls when I die. I sit at Church on Sunday and listen to my priest tell me about the joy that awaits in heaven. "Are you crazy?" I think to myself. "What will happen to my kids?" I know won't be the only Mom up there (hey, a girl can hope for the best) who is wracked with worry. We'll wear holes in the clouds as we pace.

There are two stories in the media right now that address my "I can never die" fears. And they highlight why I think medically treating autism is imperative, as tens of thousands of cute youngsters with autism race toward adulthood.

First is the tragic story of Sky Walker, an eighteen year old with severe autism in Portage County, Ohio. Sky was in jail for months, charged in the beating death of his single mother, Kent State University Professor Dr. Trudy Steuernagel. (He was just released to a more appropriate facility in Ohio, I'm told.) Sky is profoundly affected by his autism. (You can read full details on the Sky Walker case from arrest through arraignment here.)

I think of Sky every night when I tuck my girls safely into their beds, knowing he's sleeping somewhere in Ohio, without a mother's kiss goodnight. He must be terrified, confused and angry. I can barely think of Dr. Steuernagel and her violent death without losing my breath. It's every autism parent's nightmare come true. You're dead and your kid is alone in the world. That she died (allegedly) at the hands of her son makes the case unbearable.

Second is the story of Dr. Andrew Wakefield, a British physician at the center of the increasing questions about vaccines and autism. He is facing a challenge to his career that rivals anything that happened in Salem, Massachusetts centuries ago. It would be impossible to summarize the gauntlet Dr. Wakefield has navigated in his effort to medically assist children with autism in a short post. You can read about it here. Dr. Wakefield, and a small cadre of doctors like him, is fighting to help children with autism function better.

I don't think people with autism are naturally violent. I also don't believe they are mentally ill, even though the diagnosis is classified as mental illness. I think they need far more medical care than the current system of shunting people with autism to psychiatrists and neurologists is able to offer. Addressing the real physical problems associated with autism can greatly ameliorate dreadful behaviors. Most traditional docs simply don't believe autism is treatable outside of therapy and powerful psych drugs (both of which have their place in treatment, but they aren't the only options.)

Oil of Olay and Lady Clairol will get me through the next couple of decades. By then I pray that we can treat/manage/cure (call it whatever makes you happy, this post isn't about choosing sides on that debate) autism so that that there will never be another Sky Walker facing murder charges because of his behavior. And that there will be thousands of doctors like Dr. Andrew Wakefield to make that happen.

Then maybe, just maybe, "rest in peace" will be an option for those of us with a child on the spectrum.