THE BLOG

Change.org v Change.gov and Autism Recovery

02/03/2009 05:12 am 05:12:01 | Updated May 25, 2011

Yesterday, I received several emails from parents of children with autism who were concerned about an autism blog that they thought was posted at the official website of the Barack Obama Transition Team, www.change.gov. On the blog, it says that, "Recovery from autism is neither possible, nor desirable"

Shortly after posting it, someone alerted me that this website was at www.change.org, and was not affiliated with the President Elect. Though I take small comfort in knowing I am not the first person to make that error, I take responsibility for the mistake.

However, I am not sorry for what I wrote about autism recovery. The basic message remains the same. I repeat some of my original post again here, which I will also send to change.org:

"Recovery from autism is neither possible nor desirable,"

Those words were written by the two women hired to head up the new autism blog at www.change.org -- Kristina Chew, who has a son with autism, and Dora Raymaker, an adult on the autism spectrum.

These women believe that autism is a genetic disorder that children are born with, and is simply part of natural human diversity. They are generally opposed to those who would seek to "treat" autism, or try to recover a child from the spectrum.

I am sure that Dr. Chew loves her son very much - and she loves him just the way he is. That is fine and admirable. But Dr. Chew does not speak for the countless thousands of parents that I have met who love their children just as much, but don't think of their children's condition as inevitable, nor as something to celebrate.

For these thousands of parents, autism is not a quirky nod to human diversity. It is a nightmare without end.

I have seen their wonderful children. I have heard them wail in pain the whole night through, bang their heads into dented closet doors, hang their inflamed and pain-wracked bellies over the sofa back in vain attempts for deliverance from the agony they cannot describe, because they can no longer speak.

I have seen children with autism run out of the house naked and into the cold, black night, only to be found hours later wandering down a lonely back road.

All of these children were perfectly normal before they "got" autism, at around age two, or so. Like their parents, I cannot look at them without thinking that recovery from autism, for them at least, is most desirable, indeed.

But is it possible?

Based on my personal experience over the past five years, it is. I have met dozens of children who are now completely, or almost completely "recovered" from the disorder. They have had their diagnoses taken away. Their state-sponsored services have been happily jettisoned.

These kids are virtually indistinguishable from their peers - some have girlfriends and boyfriends, teammates and college plans.

But they did not just spontaneously recover - they were recovered, through behavioral therapies, dietary changes, vitamins, biomedical interventions, or various combinations thereof.

So, the people who were chosen to run this autism blog don't want to find treatments for autism. They don't believe that autism is epidemic, and don't think there are environmental factors involved in its cause.

In fact, they are not particularly interested in even finding out why children have autism in the first place.

"Focusing on what causes autism diverts attention away from considering issues of pressing concern to actual autistic persons and their families today," they wrote, which seems like an odd representation of a man who ran for President on a pro-science agenda.

Everyone is entitled to their opinion, and to the right to express their opinion. Parents such as Dr. Chew have the right to withhold autism treatments from their son. And they have every right to question - and even criticize - those parents who do want to treat and recover their children.

Like many Americans, even President Elect Barack Obama has an old, dear friend with an autistic child. It is hard to imagine the President - or anyone for that matter, saying to this parent: "I do not think we should devote resources to finding out what happened to your son. I do not believe there is anything we can do to make him better, and it is not desirable to even try."

Recovery from autism may not be desirable for everyone. But it is possible for many. And for the thousands of loving parents that I have met all over America, it is the most joyous, desirable thing in the universe.