Thursday, May 21, 2009

Autism's snake-oil salesmen make me mad

I do not have a child with autism, but I know a number of families (mostly virtually) who have children "on the spectrum."

While some of these parents embrace their children's differences, raising a child who regularly acts out and doesn't connect with you emotionally can be heartbreaking, and a lot of people are desperate for a cure--something that will bring their kid back and allow them to move into the mainstream.

Unfortunately, where there is desperation, there are shamans and snake-oil salesmen ready to take advantage and profit from someone else's misery.

This weekend, the Autism One conference comes to Chicago. The keynote address will be delivered by Jenny McCarthy, a celebrity-turned-author who has made it her mission to cast doubt upon vaccine safety and promote autism "cures" backed largely by her own anecdotal evidence. Also on the schedule are Dr. Mayer Eisenstein and Dr. Mark Geier, promoting their "Lupron protocol," an unproven regimen of dosing autistic kids with a castration drug. The therapy is based on a theory, unsupported by mainstream medicine, that autism is caused by a harmful link between mercury and testosterone. Children with autism have too much of the hormone, according to the theory, and a drug called Lupron can fix that.

Now I understand that stressed-out parents are ready to hear--and try--anything. But the Lupron protocol is baseless; "more than two dozen prominent endocrinologists dismissed the treatment earlier this year in a paper published online by the journal Pediatrics." But what's the harm? Well, experts in childhood hormones warn that Lupron can disrupt normal development, interfering with natural puberty and potentially putting children's heart and bones at risk. The treatment also means subjecting children to daily injections, including painful shots deep into muscle every other week.

What will it take for the autism community to partner with scientists and work to find a cause (a genetic link has already been discovered) and a real cure--the kind backed by rigorous, double-blind studies? All the chatter over vaccines, diet, chelation and other quack theories and cures is drowning out the real information, guidance and support these families surely need.