THE BLOG
03/28/2007 02:13 am ET | Updated May 25, 2011

Autism Speaks: Will Anyone Listen?

Two years ago, Bob Wright, then president of NBC Universal, and his wife Suzanne founded the blockbuster charity Autism Speaks, (www.autismspeaks.com) after their perfectly normal grandson, Christian, developed the disorder and stopped speaking.

The Wrights could easily have kept quiet about it, like so many prominent families do, and hid behind well-funded walls of secrecy and privacy. But instead, they bravely chose to speak out about a devastating illness that now claims one in 150 American kids -- 80 percent of them boys.

Since then, the Wrights have raised tens of millions of dollars for research, much of it earmarked to find the gene or genes that "cause" autism spectrum disorders.

While no one disputes that autism has a genetic underpinning, there is still a fierce debate over the potential role of environmental influences, particularly mercury, and very particularly, mercury in vaccines.

Many in the upper echelons of Autism Speaks have rejected any environmental hypothesis and insisted that autism is purely a genetic disorder -- though Bob and Suzanne Wright (and the organization itself) remain officially neutral on this crucial question.

But now, Christian is getting better, and that wonderful news could change everything.

Why? Because "genetic" disorders don't typically improve on their own. And little Christian, the child who inspired Autism Speaks, has started to speak again. Will Autism Speaks listen?

On Tuesday Christian's mom, Katie, posted an entry on Yahoo's EOH List (named after my book, "Evidence of Harm" at www.groups.yahoo.com/group/EOHarm) that minced not a word:

"I believe that Christian's regression and subsequent autism was the result of receiving 6 vaccines during 1 office visit at 2 months of age," she wrote. "He screamed for 12 hours and had a 104 degree fever nearly the entire time. His vaccines contained thimerosal," the mercury-based preservative.

"It is devastating," she added, "because so much of this is preventable."

Since then, Katie said, she and her husband took Christian to doctors belonging to a group called Defeat Autism Now, or DAN. "DAN Doctors" believe that mercury and other environmental factors are what triggered most cases of autism, and have developed a controversial protocol of "biomedical interventions" aimed at removing heavy metals from autistic children and trying to repair some of the metabolic damage they may have caused.

"He's definitely getting better," Katie told me by phone. "He was a very sick kid, with an extended gut and inflamed intestines. We couldn't do anything until we got that under control." But once Christian started to improve physically, she said, he also began to get better emotionally, mentally and cognitively.

When Christian's gut improved, his parents began trying other, still-unproven treatments like dietary changes (no wheat or dairy) chelation therapy (removal of heavy metals from the body) and methyl B-12, which could help restore a critical process called methylation - a needed tool for detoxification and proper nerve function that is apparently deficient in some autistic children.

"Christian is speaking now, though only when prompted," Katie told me. "His eye contact is returning, and his crying and tantrums have subsided." And she said, "His ability to attend has returned. Now he can sit and do his lessons and learn, whereas before he would just lie down and scream in pain, because his abdomen hurt so much. But he still has a long way to go."

Perhaps most heartening to Katie is that Christian can now tolerate being in close contact with his brother, something that used to send the boy into screaming fits of anxiety.

So how will some Autism Speaks officials react to Katie's statements? They could fall back on two recent, but highly inconclusive studies that support the autism-is-genetic paradigm, and continue to reject the environmental hypothesis. But I wouldn't bet on it.

To begin with, Autism Speaks is already funding research into environmental causes of autism, including studies like: "Genetic Susceptibility to Mercury-induced Immune Dysfunction in Autism" ($120,000); "Do Environmental Factors Play a Role in Autism? A Test Using Natural Experiments" ($80,000); and "Double Hit Hypothesis of Autism: Genetic Susceptibility and Environmental Exposure to Metals," ($120,000).

Secondly, an excellent article in the current issue of Discover Magazine (www.discovermagazine.com) provides a clear and detailed account of the hitherto derided "biomedical interventions" (based on the premise that environmental toxins like mercury sparked the illness) that seem to be helping Christian and so many other kids. Author Jill Neimark "really nailed the environmental factors argument regarding how autism is triggered," Katie wrote on the EOH list. "I hope more journalists follow (her) example."

And finally, some might ask (even in a Katie Couric kind of way): If autism is purely genetic, then why is the prestigious Institute of Medicine holding a two-day workshop in April called "Autism and the Environment: Challenges and Opportunities for Research?" And why, for that matter, is the National Institute of Mental Health funding a clinical trial of chelation therapy as a treatment for autism?

The Wrights' grandson is now, perhaps, the most famous toddler with autism in the world. And the whole world, including the world's largest autism charity founded upon his very diagnosis, should listen to his mom: "There is no question that I believe my son regressed into autism due to environmental factors," Katie wrote. "No question."