08/26/2005 08:47 pm ET | Updated May 25, 2011

Autism and Chelation: Where is the Science?

Nearly four years ago, the Institute of Medicine recommended research into chelation therapy and autism. But that never happened, and now a little boy in Pennsylvania is dead.

The heartrending tragedy of Abubakar Tariq Nadama, an autistic five-year-old who died while undergoing chelation this week, is one of the saddest chapters in the very sad saga of autism in America.

But even as the grieving immigrant mother makes funeral arrangements for her beloved boy, opponents of the theory that drew the family to America (the theory that mercury triggers autism, and removing it through chelation may improve symptoms) are holding his death up as proof that the idea is bogus. They claim that the use of chelation to treat autism is foolishly dangerous, and should be shut down at once.

Some people have come perilously close to exploiting this tragedy to further their own political or personal agendas. Some blame the boy’s death on his mother, who has been labeled as reckless and “desperate.” Others blame the Pennsylvania doctor -- and any autism doctor willing to try chelation (the use of certain chemicals to remove heavy metals from the body) – for the tragedy. Some fault me, for writing a book that dared to include the topic of chelation and autism within its pages.

It’s time to take a deep breath and look at the facts.

First of all, only an autopsy will reveal the actual cause of death, and I think it is prudent to wait before jumping to any conclusions about the general safety of chelation and autism. That said, the boy did die while undergoing the procedure, and it’s possible the controversial treatment is what killed him.

But here is where things get more complicated. Abubakar was given a substance known as EDTA, and he was receiving it intravenously. EDTA is used mostly (and legally, I might add) for the treatment of lead poisoning. EDTA is not typically used in mercury cases, and it is not clear why it was used to treat autism here.

In fact, I am unaware of any autistic child who’s been chelated with EDTA, nor am I familiar with any autism cases where IV chelation was employed. The chelation methods I have written about (I do not, and cannot recommend treatments, for the record, I only report on them) were either oral or trans-dermal, and they used substances that are significantly different than EDTA.

Furthermore, I cannot find any reference in the medical literature about any patient dying from chelation. (Please post them if you have them).

Does chelation therapy work? We just don’t know. Could it be dangerous, even deadly, for children with autism? Perhaps, but there’s no hard science available one way or the other. And if chelation does improve symptoms, what are the best agents, at what doses and timing, and through which route of administration? No one can say, of course, because no one has bothered to study these questions in double-blinded trials.

Which brings us back to the IOM recommendation of 2001. The committee assigned to look into thimerosal (the mercury containing vaccine preservative) noted that some autism practitioners report “clinical improvements following chelation.” And though the committee said that chelation “is not a benign treatment,” it nonetheless recommended “careful, rigorous, and scientific investigations of chelation when used in children with neurodevelopmental disorders, especially autism.”

That report was issued on October 1, 2001, nearly four years ago. But few paid attention to the recommendation, and no one did the hard science on chelation. This left parents and doctors flying half-blind in pursuit of chelation -- not out of “desperation,” but out of strong evidence their children had suffered from mercury exposure.

Just think, if the government had listened to the very IOM report it commissioned back in 2001, we might know a lot more about chelation and autism than we know today. If clinical trials had gotten underway then, we would know with certainty whether chelation could heal, or kill.

If hard scientific proof had been uncovered that chelation was 100-percent worthless in the treatment of autism, no parent or doctor would still be pursuing the therapy today. If evidence had surfaced in clinical trials that children could be harmed or even killed by chelation, no one would be using it today. The doctor in Pennsylvania would have halted chelation therapy long ago, and this poor grieving family would never have crossed the ocean from the UK in pursuit of its false promise.

But what if the opposite were true? What if the “rigorous science” recommended by the IOM had yielded proof that chelation can indeed help some kids -- provided that it’s done with the safest agents, at the safest doses, and through the safest routes of administration (not to mention in combination with other therapies)?

Either way, if America had done its scientific homework, as recommended by its top science professors, Abubakar might still be alive today.

If chelation is quackery that kills, let’s outlaw it today. But if it can be done safely, with demonstrated clinical benefit to some autistic patients at a minimum of risk, then it should be approved by the FDA for the treatment of autism.

Does chelation in autism kill or cure? Only hard science will answer that question. What a shame we have wasted four long years not finding out.