I’d like to thank reader Sara for sending me some links about the ongoing political hell that is the autism controversy. It remains, to this day, something of a mystery as to why this disease, before all others really, brings in the woo-peddlers and causes so much political strife, but we don’t need to know the causes to know the effects—families suffer from an overload of bullshit that’s ultimately not helpful, and could be harmful. Anyway, the first link frustrated me to the point where I felt kind of helpless. The article, at first read, makes it seem like using chelation to treat autism is, if not effective, at least a bit of harmless alternative medicine that may be helping. It gives aid and comfort to that most innocuous-seeming but deadly argument, “They’re not hurting anyone, so why not?” Only 7 paragraphs in do you find out that chelation is possibly dangerous.
One of the drugs used for chelation, DMSA, can cause side effects including rashes and low white blood cell count. And there is evidence chelation may redistribute metals in the body, perhaps even into the central nervous system.
Chelation, for what it’s worth, is a real procedure used to detoxify people with heavy metals in their system. The unproven-close-to-disproven theory is that autism is caused by mercury poisoning,* and from that, people extrapolate that chelation could be used to undo the effects of this supposed poisoning, which requires several steps of really unscientific thinking to get there. It’s kind of a stunning example of how a little bullshit starts to grow and mature and turn into mega-level bullshit. It has a weird internal logic to it, but there are just giant reasoning holes. It would be funny, except that real life children are being subjected to these treatments, and real life parents are convincing themselves it’s working when it’s probably not.
This was beyond my reach, so I sent the link to Steven Novella, who wrote a piece on Science-Based Medicine explaining why researching chelation as an autism treatment was unethical in light of the improbability of its effectiveness. Quoth Steven:
Medical research has always been ethically tricky – it requires giving humans experimental treatments with unknown benefits and risks. But over the last few decades (originally triggered by Nazi abuses) there has been evolving ethical standards for medical research. They include many principals, among them that any experimental treatment must be more likely to help the subjects of the study than to hurt them, prior research must show that the treatment is probably safe – or at least is not highly toxic or dangerous, and there must be a plausible belief that the treatment is likely to work. Further, study subjects must be given full informed consent, and regardless of the treatment being studied they must receive at least the minimal current standard of care. In other words, you cannot withhold proven therapies in order to study unproven ones.
For this reason many consider using chelation therapy for autism to be unethical. There is insufficient scientific justification to believe that it might work, at least not enough to justify the safety concerns. Subjecting children to a risky treatment that probably doesn’t work is certainly ethically dubious.
The post explains in further detail why the improbability of the treatment puts it in the “more likely to be dangerous than helpful” column. Read the whole thing; he knows a lot more about the issues than me.
There is no cure for autism. However, early diagnosis and intensive treatment starting early can do a lot to improve outcomes. Sara also sent this interesting article from the LA Times about how genuinely effective treatments for autism are out of parents’ reach, because they don’t have insurance or because their insurance refuses to pay for it. Yes, you read that right—refuses to pay for effective treatments, which of course are time-consuming and expensive. Be prepared to want to throw stuff around in fury.
Treatment is mainly behavioral training, teaching such skills as dressing. There is wide agreement that the sooner treatment begins, the more effective it is, and that early intervention pays off in the long run by developing self-reliance.
But it costs money — as much as $70,000 a year per child. The state spent $320 million last year, up from $50 million a decade earlier. Nationwide, the tab is $90 billion annually, a figure expected to double in a decade…..
Health plans say they cover medically necessary care. The problem, they say, is that parents ask for treatment that insurers deem experimental, or for basic skills training that has long been provided by state-funded regional centers and schools.
“What we’re concerned about is we’re seeing a shift of the state’s responsibilities over to the health plans,” said Chris Ohman, president of the California Assn. of Health Plans. “To just say ‘We need to have health plans cover all treatments’ could have unintended consequences.”
I highlighted that part to show how evil the insurance companies really are being in this case, because they know that even if you luck into a school district that has state-of-the-art educational facilities and superb staff for this kind of treatment, the schools don’t get them until they’re 4 or 5 years old, which means years of therapy is missed out on during the years that it matters the most. I’m pretty much obliged to point out that if health care was covered by the state to begin with, then this battle wouldn’t be going on and many of these kids wouldn’t be slipping through the cracks.
All this really shines a light, I think, onto why so many woo-based “causes” and worse, “cures” draw parents’ attention. If people are denied access to real care because it’s so expensive, they’ll be a lot more prone to grab onto anything that promises to be helpful and is within their price range, no matter how wrong it is. I honestly think this is one reason psychics can stay in business, because they’re scooping up people who need help but can’t afford real therapy. Not to say that universal coverage would erase woo completely—homeopathy seems to flourish in European countries that have national health services—but I can’t help but think that some people who are substituting fake care for real care would choose differently if they could even have real care.