For more than a decade, parents who believed Wakefield’s claims have accused doubters of playing roulette with the health of their children. But those who questioned his views have charged that his results are not replicable, that he has financial conflicts of interest and that he is spreading fear for his own gain.
Liane Carter has read all the news reports out of Britain with their mix of predictions that this is the end of Wakefield’s career as a researcher (he now runs an autism clinic in Austin). But some parents promise to follow him anywhere. To Carter, it all sounds numbingly familiar. In a guest blog today, she describes her frustration with those who prey on the desperation of parents with unfounded promises of an answer. Time spent on false hope, she writes, is time wasted on finding an actual cure.
CURE DU JOUR
By LIANE KUPFERBERG CARTER
Two years ago, Jenny McCarthy, the actress turned activist, said she found the cure for her son’s autism. Since then, I’ve watched McCarthy and her autism advocacy group, Generation Rescue, lead an ideological, unscientific crusade against childhood vaccines.
Oprah has signed a deal to sponsor McCarthy in her very own talk show. I’ve listened to McCarthy’s announcements that her son Evan “is no longer in the world of autism.” He is, she says, “recovered.” It makes me cringe.
I don’t know what “recovered” looks like. I’ve heard people throw this term around, but I’ve yet to meet a child who is “cured” of autism. You could say that any child receiving therapy is “in recovery.” I’ve seen many kids who have made good progress in a therapeutic setting, my own 17-year-old son included. But most of these children still are and will always be autistic.
I’ve watched in anger as McCarthy plugs her books to Diane Sawyer, Larry King and People magazine, telling the world that the gluten/casein-free diet or biomedical treatments for yeast and metal toxicity have fixed her child. She draws the analogy that alternative biomedical treatments for autism are like chemotherapy for cancer: some patients benefit, many don’t.
True enough. But there are far more of us in the “don’t” category. Behavioral therapy still remains the gold standard in treating autism. When our son was not yet 2, we immersed him in all the mainstream treatments: applied behavioral analysis, speech therapy, occupational and physical therapy.
But for good measure, we also dipped our toes in the biomedical pool. Our only rule: whatever we tried must be safe, pain-free and noninvasive. We tried the gluten/casein-free diet and probiotics and spent our savings on cranial sacral therapy, auditory integration therapy, homeopathy and food-sensitivity testing.
Those were the years that the Autism Research Institute first launched DAN (Defeat Autism Now), a protocol of biomedical interventions, so we consulted the local DAN doctor too. He charged thousands of dollars, most of it not covered by insurance, yet his waiting room was packed. Over the course of a year, he offered one cure du jour after another, quick to take advantage of our desperation. Finally, he insisted our 4-year-old had stealth birus. He urged us to give him a cytotoxic drug called ganciclovir then being used for AIDS patients and other severely immuno-compromised people.
“How many children have you treated with this?” I asked.
“I’m treating one patient right now,” he said.
That’s when we fled. In the years since, we’ve watched so-called miracle cures come and go: secretin, a pancreatic enzyme; intravenous gamma globulin; the “metabolic enhancer” DMG; hyperbaric chamber therapy; mercury chelation; stem cells from China; the Lupron protocol, a form of chemical castration. All junk science.
There’s nothing wrong with reasonable hope. Parents need to cling to something. I still fervently believe that early intervention is critical. With therapy, 40 to 50 percent of the children who are diagnosed at age 3 gain enough skills to be mainstreamed by 6, though many continue to need special educational and social supports. A small but provocative study released at IMFAR (International Meeting for Autism Research) suggests that 10 percent of children with autism improve sufficiently by age 9 so that they no longer meet diagnostic criteria for the disorder. Significantly, most of these formerly autistic kids got intensive, long-term behavioral treatment soon after diagnosis.
It’s distressing and hurtful to hear McCarthy say her son is cured because she “was willing to do what it took.” McCarthy, who describes herself as one of a tribe of “warrior moms,” seems to imply that if our kids are unrecovered, it’s because we didn’t do the diet right, weren’t willing to let doctors inject our children with unproven drugs or somehow just didn’t love our children enough.
I’ve heard McCarthy say on national TV, “Evan is my science.” I’m sorry, one little boy is not “science.” Warm and fuzzy anecdotes don’t do it for me. Give me hard science any day, with its double blind studies and rigorous peer review.
I don’t doubt that McCarthy loves her son. But the vast majority of our kids are not going to be cured. It’s time for the media to stop giving airtime to celebrities with no medical credentials who peddle unrealistic hopes to families dealing with a devastating diagnosis.