Earlier this month, the New York Times published an article ("Trying Anything and Everything for Autism") by Jane E. Brody, which talked about a family's never-ending search to find the right autism treatments for their son—and the ups and downs they face as parents going through that process. It's a story I'm sure a lot of you can relate to as well. I know I did.
I actually had a fairly strong reaction to the article, so I decided to write a letter to the editor…and I'm happy to report that it was just published. You can check it out here.
I couldn't agree more with the notion of trying anything and everything within your means because it's about finding what treatments work best for your child. And what works for one child may have absolutely no impact on another child. As I said in my letter, I encourage all parents to trust that they are their child's best expert.
Part of becoming your child's best expert is by absorbing any and all information you can about autism treatments. We hope to make that process a bit easier with our treatments section, which provides treatment information and ratings by those who have tried them. We invite you to visit—and if you've tried something that did (or didn't!) work, we hope you'll share that experience and rate it so other parents can benefit from your insight!
Best,
Jenifer
Personally, I have some concerns with parents as the best experts, and with absorbing all there is to learn about autism.
Here's why.
First: While I know my son very well indeed, I ONLY know him in certain contexts - and I ONLY know what he's like with me. I have watched others (teachers, therapists, friends) work with or just talk with Tom - and they see a whole different child. Sometimes he reveals things to others that I've never seen. Sometimes others are right when I'm wrong. So far, those "others" haven't been MD's - but then again, he's only seen a very few MD's over the years.
Second: Learning "all you can" about autism is like living in a revolving door that never stops. I've been writing on the subject for three years, and the more I learn the less I'm sure of. There is no agreement among researchers, parents or therapists about... what autism is. What causes it. How to treat it. Whether there's really an epidemic of autism. Or anything else for that matter. By following the autism headlines and blogs around and around, you can quickly become overwhelmed and guilt ridden. In fact, you'd be willing to "try anything" - because, according to the research so far, it seems that anything, from vitamin D to special glasses, could make the difference.
What makes it even tougher is - when I do something, Tom progresses. When I do nothing, Tom progresses. In fact, Tom progresses with therapy and without. In school and at home. Which works better? It can be very tough to tell.
I've found that, after all this time, I'm really an agnostic on almost everything related to autism. If I rated a treatment, what I'd really be saying is "I feel comfortable with this approach, and my son improved while I used it." But that's all I'd be saying. Not that it's more effective - just that it worked for me, and Tom seemed to benefit.
I'm happy to share that information. But unless a parent is very much like me - and their child is very much like Tom - it would be kind of like saying "I really love apples." It's nice to know, but it's hard to make use of the info.
All the best,
Lisa Jo Rudy (www.autism.about.com)
Posted by: Lisa ( Email: | Visit ) at 1/27/2009 10:22 PM
|