Letters From the Issue of Thursday, December 28, 2006

Driven to Despair

The story behind the story: I wanted to thank Paul Rubin for this wonderful article I just read ("Jump Street," December 14). As I started to read, I remembered that Kevin Keogh had jumped to his death from his moving car in 2004. It was a real tragedy. The public all too often hears only bits and pieces of a story, and then never hears the rest. I cheer you for giving Kevin and his family the dignity they deserve. I, like many others I'm sure, remember a crazy man climbing on top of his Mercedes and jumping off while it was moving. We don't hear of the hows and whys. This man was obviously a very decent person who never got to tell the why. Thank you for telling it for him.
Sherry Seeberger, Chandler

Stylin': Once again Paul Rubin has written a piece that I could not put down. Totally captivating. I like Rubin's style. Always look forward to his next article.
Michael Hennesy, via Internet

Conditional Condition

The new A-word: I wasn't sure if I was going to read Amy Silverman's article "The Scarlet Letter" (December 7) when I just happened to see the New Times cover as I was walking out of the grocery store. As a kind of unofficial rule, I have generally avoided most stories about the new A-word since my 4-year-old daughter was diagnosed with the condition in 2003. Curiosity got the better of me, and I am glad that it did.

I didn't always have an aversion to autism stories. Actually, in the first six months after my daughter was diagnosed, I read every book about autism that I could get my hands on. I spent hours on the Internet reading articles and posting messages on autism message boards. I, like many parents with a fresh autism diagnosis, dragged my daughter across town to get blood work, urine tests and stool samples, in the hope that maybe there was something medical we could do to "fix" her. In short, for those six months, autism became my entire existence. And it wasn't fun.

And then one day, another mom in some therapist's waiting room made a casual comment about how impressed she was that my daughter could put together puzzles at such a young age. Back then, I longed to hear other people tell me something good about my daughter, so I smiled and thanked her. And then she said, "It's because of the autism that she can put them together so fast." For reasons I didn't immediately understand, that little innocent-enough comment pissed me off and crushed me all at the same time. Is that how it was going to be? Everything my daughter ever does in her life — good or bad — is always going to be "because of the autism"? If she's smart, it's because of the autism. If she's in a bad mood, it's because of the autism. If she's good at puzzles, it's because of the autism. Why can't she be good at puzzles simply because she is a smart girl?

At that point, I made a very conscious decision. I was not going to let this condition own my daughter or my family. I did not want to be one of those autism parents who seemed to only see a science experiment whenever they looked at or talked about their children. So we stopped with the doctor visits, lab tests and medications. We kicked all of the special diets to the curb and threw all of my autism books out with them. We stopped talking autism to death, and I made it a point to talk about other things in the therapy waiting rooms where I still spend several hours a week as my daughter receives speech, music and occupational therapy. I also stayed far away from autism message boards and support groups, because even though I know that they are a wonderful resource for some parents, I generally find them as depressing as the stomach flu. I also stopped telling people that my daughter was diagnosed with autism and told them instead that she simply has some delays.

I know some parents disapprove of my approach to my daughter's issues. A couple of them even went so far as to scold me for getting pregnant last year because, "what if the baby turns out to have autism?" I have also met parents, like the one mentioned in the article, who think I am operating under some delusion that my daughter is going to be "typical" just because I insist that she is educated in an integrated environment. That isn't denial, but decades' worth of solid research that consistently shows that including children with special needs in typical classrooms is good for them and good for the other students.

Anyhow, I just want to say thanks to Amy Silverman for showing that there are different approaches to autism. Reading this article reminded me why I have chosen to handle my daughter's condition the way that I have.
Kylie Mote, Tempe

Maybe it's not in the genes: I recently read your article and was most concerned about the information in it. The main problem with your reporting is that you state that "many experts agree that almost all autism is based in genetics, meaning it is inherited."

First, that is a dangerous statement without clearly stating how many experts you've interviewed for this article. Was it one, three, one group, one company, etc.? Also, there is an inherent "wrongness" in that statement just making any sense. How can almost all autism be genetic? Does that mean that some "autisms" are not genetic? It makes no sense. It's like saying that almost all blue eyes are genetic, except (of course) the ones that slipped up on us and "appeared" out of nowhere. Do you see the ridiculousness of that statement? I think it's great that we have a public that is now talking about this issue; discussion is necessary for answers. I do not think it's responsible for people (with just opinions) to report on such a serious, life-changing condition as if they have the final say. This debate is far from over, far from decided, far from a blanket statement that it's basically genetic. There may very well be a genetic component, but we must not act as if the case is closed. Have you ever wondered how this damage happened (to these genes) in the first place? Have you investigated the other side of this debate?

I have a child who was diagnosed with PDD when he was 3. He is now 5. And, because of very specific things I've done, he is almost out of the woods completely! It has taken research, behavioral therapy, major diet changes, and specific herbs that have changed his life. Before you come to a conclusion and misinform the public, please do a better job of researching the issue. I encourage you to read David Kirby's book Evidence of Harm, and then maybe you'll have a different perspective.

Have you been following California's autism rates? We will know in the next few years how this will shake out. Don't you find it a little curious that the "autism" rates skyrocketed when the (recommended) childhood vaccine schedule almost doubled? There are so many unanswered questions for the so-called experts. I am a concerned parent, one that would certainly not want a fly-by-night answer to my child's problem. I would hate to think that someone may have read your article and given up because "it's just genetic." That puts parents in a position of no control when there is so much that can be done to help these kids.
Heather Murr, Scottsdale

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