January 8, 2014
When Radar Online published its “exclusive” report last week alleging that Jenny McCarthy’s son might not be autistic but instead may suffer from Landau-Kleffner syndrome, my stomach lurched. The gossip rag’s post—which as it turns out was neither exclusive nor new, but a poorly aggregated report of a 2010 Time magazine profile of McCarthy—claimed that the onetime 1990s footnote who is now a co-host of The View had changed her story. She hasn’t, and for all we know, she might be right. And if so, the slander is inexcusable. But what isn’t excusable is the tremendous amount of damage she’s caused, a scourge on national health that has set us back decades. For McCarthy has become the anti-vaccine movement’s loudest mouthpiece since her son, Evan, was diagnosed with autism in 2005. Public health officials and pediatricians consider her irresponsible and dangerous. And for parents like me, struggling to raise kids on the spectrum and get them the services they so desperately need, McCarthy inspires particular rage. Why does this woman still hold tight to these myths? And more critically, why is she still getting airtime at all?
In 1998, a British gastroenterologist named Andrew Wakefield published a paper alleging that the measles-mumps-rubella vaccine might cause autism. In the years since Wakefield has been revealed as a fraud and profiteer. In 2010 he lost his medical license and the British General Medical Council conducted an inquiry finding that he acted "dishonestly and irresponsibly.” One study after another has failed to find any link between childhood vaccines and autism. Yet the myth that vaccines cause developmental disorders endures because of celebrity campaigners like Jenny McCarthy.
McCarthy plays on the fears of parents—parents who are scared of their kids “getting” the disorder and the fears of parents who want to understand their child’s condition. Autism is unique among disabilities in that the presentation of the disorder is so incredibly varied. While some kids show delays very early, others seem to develop normally and then suddenly regress after age two. A researcher my husband and I met said, “If you’ve met one person with autism, you’ve met one person with autism.”
The diversity in the autism community makes it hard for parents who want to understand the cause of their child’s delays and find a treatment. While some children quickly respond to some autism therapies, others don’t. Many parents feel a moral obligation to try everything; even methods that are unproven or prohibitively expensive, and are still left feeling they could be doing more. And despite what some call the “autism epidemic,” 1 in 88 children now being diagnosed as on the spectrum, little is known about what causes the disorder. Recent studies point to advanced paternal age and gene mutations.
Because of the work of Jenny McCarthy, the vaccine debate has dominated the autism conversation for years. Scarce research dollars have been diverted from potential breakthroughs in autism research. Families have spent their savings on “miracle cures.” And declining vaccination rates have led to outbreaks of deadly illnesses like Hib, measles, and whooping cough, not seen in decades.
I never considered vaccines to be a factor in my son’s diagnosis. He had delays as early as four months, long before his measles-mumps-rubella vaccine. Finn was late to smile, late to sit up and was dramatically underweight. He’d had two MRIs and had been seen by three neurologists at three hospitals before he was finally diagnosed with autism at 15 months. In the aftermath of diagnosis, my mind desperately searched to understand what had “gone wrong.” Was it that fruity cocktail I had when I was seven months pregnant? The fact I didn’t take prenatal vitamins? Or was it Finn’s complicated birth? The umbilical cord was wrapped around his neck and I almost had a C-section before he was delivered by forceps. But Finn’s APGAR scores were normal. No time spent in NICU, we were home the morning after his birth. But I thought if I could blame the diagnosis on a mistake then maybe I could undo that mistake. I could make Finn “better” and our family could go back to life as it was.
Five years after his diagnosis, I realize that I was focusing on the cause of Finn’s autism, because I couldn’t accept that he had autism. I didn’t want to be a “special needs mother” in a “special needs family.” I didn’t want to lose my old life to this disorder. But the only way to treat autism was to face it head on and not be afraid of the unknowns. To get Finn the kind of therapies that are finally helping him learn to communicate, use the bathroom and wash his hands required serious dealing.
The only proven technique to address autism is early behavioral intervention, like ABA (Applied Behavior Analysis). I’m lucky to live in Massachusetts, a state where the recent Arica law requires insurance to pay for this therapy. In most states parents must pay out of pocket for ABA and many kids aren’t able to get it at all. Seth Mnookin, author of The Panic Virus, says that for families living in rural parts of the country, hours away from the nearest developmental pediatrician, there are often six-month waiting lists for such appointments. He argues, “If that community was better served, you would not have an anti-vaccine autism movement. It’s a huge factor.”
Instead of focusing on the tired vaccine debate, let us focus on helping the kids that are currently diagnosed. How can we get them affordable therapy? How can we support their families without bankrupting their communities?
The fact that McCarthy is continuing to get the work that she does, appearing in Times Square on New Year’s Eve, co-hosting The View, is to overlook the damage she has caused and continues to cause in the autism community by not reassessing her stance or using her fame to do actual good.