The Chicago Tribune has started a watchdog series on autism and the quackery deployed to “treat” the disease and bilk people of their savings to do so. The first article, a big one in last Sunday’s paper, is a solid example of good autism writing. The reporters spend time on the controversy, cover both sides of the debate, and use the science and their own brain to evaluate the claims being made about the medicine. Namely, that no studies show any connection between vaccines and autism, that personal experience is not a good indicator of the validity of a treatment, and that most alternative treatments are unproven and dangerous. There were three moments I thought were particularly awesome.
First, a refutation of the argument that kids with autism should be experimented on because the need is immediate:
Many parents who try alternative therapies cite an analogy popularized by a luminary of the movement, a physician who wrote a book on recovering children from autism. They say they feel as if their child has jumped off a pier. Science hasn’t proved that throwing a life preserver will save the child, but they have a duty to try, right?
Critics say that’s the wrong way to think about it.
“How do they know the life preserver is made of cork and not lead? That is the issue,” said Richard Mailman, a neuropharmacologist at Penn State University. “However desperate you are, you don’t want to throw your child a lead life preserver.”
A treatment that hasn’t been put through a study with controls is unproven and possibly dangerous.
Second, the essay has some quotes from a scientist who does want the community to put more focus on heavy metals as one possible source of autism. But she knows the nuts in the anti-vax community, and she’s very strongly opposed to being misrepresented. Check out this quote:
Harvard pediatric neurologist Dr. Martha Herbert, who has given speeches at Autism One conferences, is often cited by advocates in the recovery movement as proof that people with stellar credentials support them.
Herbert said she endorses the movement’s push to look at environmental toxins as a possible factor in autism and supports researching whether various treatments can improve the health of children with the disorder. Chelation, she wrote in an e-mail, “is a very special case” and should not be used “to praise or damn other approaches.”
In an earlier e-mail she wrote that she would sue the Tribune if she was portrayed as “an uncritical booster and fan of potentially dangerous unorthodox treatments.”
“I’m not defending chelation,” Herbert said in an interview. “I will sue you if you say that.”
That’s awesome. I especially love that they published this nearly desperate denial. The anti-vaxers are so rabid that all reasonable scientists must be vociferous and vocal in defending moderate or curious stances, lest they be mischaracterized.
Finally, This moment at the end reflects, for me, the heart of the matter. The story had an inset about a family with an autistic boy who has discontinued the alternative treatments he’d been receiving because they weren’t doing anything. In fact, they were bunk. Check out this bit of wisdom that helps explain both the parents who buy into the treatments and the reasons one must resist:
The last straw came on a family trip to Disneyland. Laidler’s youngest son was on a gluten-free diet, and doctors had told Laidler that if he had even a bite of wheat, he would suffer a “total regression,” Laidler said.
At a buffet, while the parents were distracted, their youngest son grabbed a waffle and bit in. And then — nothing happened.
“I really fooled myself,” Laidler said.
Laidler said he now regrets having misled parents. Pitches from doctors providing alternative treatments are difficult to resist, he said.
“They are people offering hope,” he said. “And it is very hard, almost impossible, to say I will pass on the hope and go with what we know is true.”