The “Jenny McCarthy effect”: More credulity towards autism quackery

I was thinking of calling this post Jenny McCarthy and Julie Deardorff: Two crappy tastes that taste crappy together, but I’ve already used that joke with Jenny McCarthy and Oprah Winfrey. Besides, Julie Deardorff isn’t nearly as famous as Oprah, although, as I’ve discussed before, she’s probably even more credulous than Oprah towards the lastest dubious feel-good story about autism. Of course, this means that Deardorff and McCarthy are custom-made for each other, and, unfortunately, the antivaccination columnist for the Chicago Tribune has finally hooked up with the former Playmate of the Year who thinks that her “mommy instinct” trumps science about autism.

The result is predictable, and grating to anyone with an evidence-based approach to medicine, an article in The Chicago Tribune entitled Jenny McCarthy touts autism hope against tall odds.:

Actress and comedian Jenny McCarthy was working on her latest book one Sunday when her 4-year-old son wanted to talk. He was so chatty — and distracting — that McCarthy finally said, “Evan, can you please just stop talking for a whole five minutes today?”

Then she covered her mouth with her hand. “Wow. Flash back in time and think about how I had wished and prayed to say that to my kid,” she wrote in her best-selling memoir, “Louder Than Words: A Mother’s Journey in Healing Autism” (Dutton $23.95). “I got down on my knees and said, ‘No, Evan, Mamma made a mistake. You can talk and talk and talk and talk as much as you want, OK?'”

It’s a moment most parents of children with autism only dream about. But McCarthy’s current mission in life — and the impetus behind her fourth book — is to use the Chicago native’s famously big mouth to spread an unusual message: There is hope. Autistic children can recover.

Of course, autistic children can “recover” to varying degrees. It’s long been known that some autistic children, even severely autistic children, can show remarkable spurts of development and even develop to the point where they can grow up and lead independent and productive adult lives. The question was never whether autistic children can “recover.” Rather, the question is whether any of the dubious “biomedical interventions” (interventions ranging from chelation therapy, to gluten-free diets, to hyperbaric oxygen therapy (HBOT), to all manner of supplements) can improve the chances of development to the point where autistic children can grow up to live independently, with the the corollary to these therapies being the claim that mercury in vaccines, vaccines themselves, or some undefined “environmental toxin” that can be eliminated or reversed by these therapies is the root cause of autism.

That McCarthy keeps spouting that same “message” indicates, more than anything, just how little she knows. Clearly, she doesn’t realize that autism is a condition of developmental delay, not stasis. Apparently, after getting the news that her son was autistic, she thought that without any intervention he would remain as he was when diagnosed. As has been extensively described by Prometheus, a significant percentage of children diagnosed as autistic will improve to the point where they “fall off the spectrum.” It is this observation that makes individual anecdotes about autism, testimonials like McCarthy’s, almost completely worthless in evaluating whether the interventions to which she has subjected her son are of any value whatsoever or had anything whatsoever to do with his apparent “recovery.” Deardorff, of course, is, like McCarthy, utterly incapable of understanding this:

Though he’s not completely “cured,” McCarthy credits much of his turnaround to alternative “biomedical” interventions that include nutritional changes, detoxification therapies, gastrointestinal treatments and dietary supplements on top of intense behavioral and speech therapy.

When McCarthy removed wheat gluten and casein (found in dairy) from Evan’s diet, she said he doubled his language and regained eye contact within two weeks. After treating his yeast overgrowth using antifungal medication, “his social development was back on,” she said.

Although these treatments don’t produce changes in every child, they’re considered normal protocol by the Defeat Autism Now! (DAN!) project, which brings together researchers and parents for biannual conferences. DAN! (autism.com) also provides contacts for the approximately 600 doctors in the U.S. who use complementary and alternative therapies to treat autism.

While I’m glad to hear that McCarthy’s son is doing so well, once again, there’s no evidence that the treatments to which she subjected him had anything to do with how well he’s doing. To determine if these therapies do anything would require randomized, double-blinded trials. The reason is simple. Children with autism do develop, and a certain percentage of them will improve so much that it appears that they have “recovered.” Without comparing two well-matched groups in a clinical trial, it is simply not possible to tease out whether or not any of these biomedical interventions actually improve the odds that an autistic child will improve.

But, advocates will say, these biomedical interventions work. We’ve seen them work. Once again, Prometheus explains, using a rather clever analogy called The Tale of the Lucky Stockbroker, just how such interventions can become so widely viewed as effective even if they are not. And, no, it’s not because these parents are lying or idiots (although some of them, such as Jenny McCarthy, clearly are idiots), but rather because it appears “on the ground” that they do work:

Evidence-based medicine is based on data. “Alternative” medicine has “alternative” data: testimonials.

So, what’s the matter with testimonials? They’re just people’s stories, right?

Absolutely! So are reports of alien abduction, Bigfoot sightings and pixies in the garden.

Are all of these people lying? No.

They’re just telling the truth as they see it.

Emphasis mine.

Moreover, when these parents band together in groups, the Internet making it easy for them find each other, they all reinforce each other’s belief that biomedical interventions work. Once again, Prometheus puts it well:

What happens to parents whose kids don’t get better? For the most part, they are encouraged – by other parents and by the practitioners themselves – to “keep trying”. They are also encouraged to pay close attention and to “think positively” – but they are never encouraged to doubt.

In most cases, parents who give up on “alternative” therapies simply fade away. They have enough going on in their lives that they don’t feel the need to “tell their story”. Especially when it’s not wanted.

It’s the same sort of thing I discussed many moons ago, not long after this blog first came into being, about breast cancer testimonials. In fact, the two phenomena are a lot alike. Long ago, I pointed out that many breast cancer patients are cured by surgery alone and that chemotherapy and radiation merely decrease the chances of the tumor coming back. For tumors that can be removed by “lumpectomy,” as long as no tumor is left behind lumpectomy alone can be curative, even in the absence of lymph node removal. Not surprisingly, when a woman decides after an excisional biopsy that diagnoses cancer not to undergo any further surgery, chemotherapy, or radiation in favor of “alternative” medicine and then does well, as a significant number of them will do, she will tend to attribute her cure not to the surgery but to whatever woo she chose instead of radiation and chemotherapy. (Women whose cancers recur and kill them don’t provide testimonials.) Similarly, Jenny McCarthy’s son very likely would have done just as well if she had done nothing other than the “conventional” therapies of intensive behavioral and speech therapy, but because she chose to subject him to non-evidence-based “biomedical interventions,” she attributes his improvement to them, rather than to just a normal spurt of development or to behavioral and speech therapy. This sort of error in reasoning, alas, is common not just in autism or cancer but in many other conditions that are treated with CAM modalities. Worse, not all of these biomedical therapies are benign, as the case of Dr. Roy Kerry, who killed an autistic child with chelation therapy two years ago and whose hearing is scheduled for this afternoon reminds us.

What’s even more disturbing is what McCarthy apparently thinks of autism. Indeed, her attitude is one reason that I brought up the breast cancer example:

“I want to be these women’s voices,” she [Jenny McCarthy] said. “When I was 20, I had a feeling I’d be an activist, but I always thought, ‘Please, God, don’t let it be breast cancer.’ Now I can’t tell you how much I wish it was breast cancer.”

That’s right. Apparently to Jenny McCarthy, having an autistic child is worse than having breast cancer. Why is it that the British get cool celebrity moms of autistic children like Emma Noble and we get twits like Jenny McCarthy?