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An autism parent’s thank you to the Chicago Tribune

Posted Dec 03 2009 9:00pm

The Chicago Tribune has taken on a very difficult task lately. They looked closely at alternative medicine and autism. Much more, they reported a number of stories highly critical of the alternative medical doctors and practices.

Below are a number of the stories. If you haven’t read these stories, it is worth taking the time to do so.

Autism treatment: Science hijacked to support alternative therapies
By Trine Tsouderos and Patricia Callahan, Chicago Tribune

Researchers warn against misusing report

Autism treatments: Risky alternative therapies have little basis in science
By Trine Tsouderos and Patricia Callahan ,Tribune reporters

Experimental treatments

Autism treatment: Success stories more persuasive to some than hard data
By Trine Tsouderos and Patricia Callahan ,Tribune reporters

Questionable treatments for children with autism

Autism doctor: Troubling record trails doctor treating autism
Second of two parts By Patricia Callahan and Trine Tsouderos ,Tribune reporters

Miracle drug’ called junk science
By Trine Tsouderos ,Tribune reporter

These sorts of articles take a lot of work. Seriously.

Consider the usual story type: “there is controversy”. Interview both sides for “balance” and submit the story. Yes, that takes work. But, it takes a lot more work to do enough research to be confident that there is no medical controversy.

For example, is there controversy that the Geier’s “Lupron Protocol” is based on a poor understanding of autism science? Only amongst the Geiers themselves and the few parents using the “protocol”. But read what happened when the Trib interviewed Simon Baron-Cohen, the originator of the testosterone/”extreme male brain” concept of autism:

Simon Baron-Cohen, a professor of developmental psychopathology at the University of Cambridge in England and director of the Autism Research Center in Cambridge, said it is irresponsible to treat autistic children with Lupron.

“The idea of using it with vulnerable children with autism, who do not have a life-threatening disease and pose no danger to anyone, without a careful trial to determine the unwanted side effects or indeed any benefits, fills me with horror,” he said.

Scientists don’t use “fills me with horror” very often when discussing other people’s work. It would be very irresponsible for the Trib to take the “balanced story” route and presented counter arguments with anecdotal reports of amazing results from Lupron.

The same goes for when the Trib interviewed members of the Johns Hopkins team that found neuroinflammation in autopsied autistic brains, and found that they strongly felt that many alternative medical practitioners were misusing their findings:

“THERE IS NO indication for using anti-inflammatory medications in patients with autism,” the team wrote.

Meddling with neuroinflammation could actually be a terrible mistake, said co-author Dr. Andrew Zimmerman, director of medical research at the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore.

“It may actually be an attempt of the brain to repair itself,” said Zimmerman, a pediatric neurologist. Suppressing the immune response “could be doing harm.”

Again, presenting this as any sort of medical “controversy” would have been irresponsible, leading some parents to apply these therapies on their children.

To put is simply, giving some anecdotal reports claiming these alternative therapies were working would be like a story on Bernie Madoff including quotes from people who made money from his schemes. Actually, the “balanced” Bernie Madoff story would be better in that there are people who demonstrably got out early and made money from his schemes. While I don’t doubt that there were autistic kids who saw gains while under the care of these alternative-medical practitioners, there is no evidence that it was linked to the ill-conceived therapies. What’s worse, it’s easy to find the people harmed by Mr. Madoff. Few parents would be likely to step forward with complaints that the therapies were harmful.

The responses to the Tribune’s stories are simple, and to some extent effective. We all could predict them: “Tribune is against helping autistic children”; “Tribune doesn’t believe that recovery is possible”; “Tribune gives one sided, cherry picked story”.

The defense against such attacks? Being right. To do that takes work. Hard work. The Tribune writers put in the work. This autism parent thanks them for it. I wish there were more stories like this published when I was new to my child’s diagnosis.

Has the Tribune slowed the misuse of science to create ill-conceived “therapies”? Maybe. But not quite yet. Take a look at the AutismOne website, where just a couple of days ago this was posted. Here are two excerpts.

First, they (Defeat Autism Now and Autism One) still heavily rely on the Hopkins team’s results (click to enlarge):

mumper_dec_2_1

Second, they (Defeat Autism Now and AutismOne) still consider treating neuroinflammation to be a treatment for autism (click to enlarge):

mumper_dec_2_2

It must be frustrating for the Trib reporters to see that. Then again, in my view, reporters shouldn’t be writing in order to effect a change. They certainly shouldn’t be trying to embed themselves in the community they report on (for example, Dan Olmsted and David Kirby).

No, they should be reporting important facts. The important fact here is simple: there is no medical controversy about many of these so-called therapies. They are based on junk science, pure and simple. I thank the Tribune for having the guts to make that clear.

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