Nov 23 2009

Some Good Autism Reporting

I and other science bloggers spend a lot of time and virtual ink doing damage control on bad science reporting in the media. It’s hard not to get a little jaded after wading through one terrible science article after another.  I discuss this problem and one stunning example of promoting pseudoscience passing for journalism today on SkepticBlog.

But occasionally I do make a point of celebrating good science journalism when I see it – and not just a solid piece discussing a new science news item, but a reporter tackling a controversial topic and getting it right. Most of the time mainstream journalism of fake scientific controversies or fringe ideas falls for the “false balance” fallacy – presenting fake science and real science side by side, as if they were equivalent, or just a matter of opinion. Or, even worse, we get token skepticism, or no skepticism at all.

Last week the Chicago Tribune printed a long piece on biological treatments for autism by Trine Tsouderos and Patricia Callahan, and an excellent piece it was. They clearly understand what the real story is – a subculture of fringe doctors and others who are essentially doing unethical experiments and children with autism. They are exploiting desperate parents (who then sometimes contribute to the exploitation of the next desperate parents) who are seeking any possible help for their children.

Of course the desire of parents of autistic children to do everything they can to help them is perfectly understandable. But there is a quagmire out there – an insidious trap waiting to ensnare the vulnerable, in the guise of professionals offering help. So-called DAN (for Defeat Autism Now) doctors and others are offering a slew of experimental and often highly implausible treatments for autism.

These include chelation therapy, which is based upon the notion that autism is caused by heavy metal toxicity, including mercury. This idea has essentially been disproved, and there is no evidence to support the efficacy of chelation therapy – which is a risky treatment that can potentially be fatal. Tsouderos and Callahan point out that using an unproven therapy is akin to experimentation, but that these experiments on vulnerable children are not being conducted with proper protocols – so they are experiments that can never provide useful evidence. They will never prove that the treatments work or don’t work.

Further, parents are not being provided with the kind of informed consent that proper human research demands. These treatments are therefore unethical on multiple levels: the providers are not giving formal informed consent, they are not conducting proper trials that are gathering useful information, they are overselling their therapies, and they are charging for experimental treatments.

Further, they are wrapping their entire philosophy is a grand conspiracy theory – turning parents against the medical establishment, the government, regulatory agencies, and professional organizations. The result is a culture of hostility toward science and the institutions of science, while relying on fanciful and implausible experimental treatments.

They discuss the result of the Autism Omnibus hearing:

The scientists who testified sharply criticized the research behind alternative treatments, using words like “careless” and “misleading.”

“So much of what’s said doesn’t make scientific sense,” testified Dr. Robert Rust, a chaired professor of neurology at University of Virginia. “There is what I regard as cherry-picking, picking little pieces from the paper and ignoring the rest of it, and in some instances I think misrepresenting what the paper says.”

This hits upon the fact that alternative autism treatments are pseudoscience – they wrap themselves in the trappings of science, but this is simply a cover – they use evidence to support what they want to believe, not to discover where the truth lies. Then, of course, they turn around and accuse mainstream scientists of doing just that – a preemptive strike against their critics.

Another example of this pseudoscience is the use of provoked heavy metal urine testing. One test for heavy metal poisoning is to collect a 24 hour urine sample and see how much is being excreted in the urine. There are validated normal and abnormal levels, like all useful medical tests. But dubious testing companies, supporting the dubious treating doctors, perform a provoked urine test. They first give a drug that binds to heavy metals and excretes them in the urine. This dramatically increases, temporarily, the amount of heavy metals in the urine (we all have trace amounts of heavy metals in our system that we absorb from the environment). So of course these levels are much higher than the background level in the urine – but they use the normal values for unprovoked urine testing to claim that the high provoked levels means there is heavy metal toxicity. This is simply fraudulent behavior. It is malpractice.

This malpractice, however, exists in an “alternative” world, where practitioners have done everything they can to shield themselves from the mechanisms that enforce a standard of care.

It surprises me that more reporters have not caught onto the story behind this scandal. There is an obvious consumer-protection angle that usually works. But perhaps the tide is turning a bit – and thanks to Tsouderos and Callahan for a job well done.

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