I worked at the American Academy of Pediatrics on the weekend in 1998 when thimerosal in vaccines was first and falsely associated with autism in children. I remember the leadership working diligently over that weekend and into the months and years ahead to see if the claims had any credence, formulate plans to ensure the evidence was properly vetted, and deal with a flood of media inquiries.
The triggering events for all this work were reports by British physician Andrew Wakefield, which were amplified in the popular media by centerfold model and actress Jenny McCarthy, who claimed vaccines had given her young son autism.
Evidence from large studies consistently failed to show any linkage between vaccines and autism, but you can’t kill an idea, especially one amplified by a celebrity with a heart-wrenching personal connection to the controversy.
It took years of investigation to conclude that Wakefield’s reports were “an elaborate hoax.” His papers were retracted, his medical license revoked, and his reputation ruined.
You would think the debate would recede with these revelations combined with the consistent and overwhelming evidence that there is no link between vaccines and autism. Sadly, this is not the case, and largely because McCarthy, like too many people these days, believes that consistency and stubborness are the same as integrity.
Radar Online brought this all up again (in an article I can’t link to because it has been pulled from their site and gives a 404 page), when the site revived speculation first made in a 2010 TIME magazine interview with McCarthy and presented it as new. The speculation? That Jenny McCarthy’s son never had autism. In this 2010 article, the author speculated that her son was misdiagnosed, and actually had been suffering from a rare neurological disorder, Landau-Kleffner syndromeis often misdiagnosed as autism, but is treatable with variable success. Why did the reporter speculate about this? Because this is what McCarthy told her:
Evan couldn’t talk — now he talks. Evan couldn’t make eye contact — now he makes eye contact. Evan was antisocial — now he makes friends. It was amazing to watch, over the course of doing this, how certain therapies work for certain kids and they completely don’t work for others … When something didn’t work for Evan, I didn’t stop. I stopped that treatment, but I didn’t stop.
Because McCarthy’s son has responded to treatment, to a degree that McCarthy has described him publicly as “healed,” the potential for a misdiagnosis seems reasonable.
The actual section of the TIME article dealing with this reads as follows, after McCarthy’s claim that her son had autism is recounted:
Or is this the truth? There are dark murmurings from scientists and doctors asking, Was her son ever really autistic? Evan’s symptoms–heavy seizures, followed by marked improvement once the seizures were brought under control–are similar to those of Landau-Kleffner syndrome, a rare childhood neurological disorder that can also result in speech impairment and possible long-term neurological damage. Or, as other pediatricians have suggested, perhaps the miracle I have beheld is the quotidian miracle of childhood development: a delayed 2-year-old catching up by the time he is 7, a commonplace, routine occurrence, nothing more surprising than a short boy growing tall.
This is not an unusual feeling among medical professionals when they review the McCarthy case, whether in 2010 or today. Many medical experts feel that the child’s initial diagnosis was probably reasonable, but his subsequent clinical course suggests it was wrong. McCarthy seems to be sticking to the initial diagnosis, and ignoring that years have passed and notable improvements in her son’s condition have occurred. So, when the Radar Online article began to gain traction, McCarthy responded with adamant statements that no such misdiagnosis had occurred, that authoritative centers were involved in her son’s initial diagnosis, that she still believed in the discredited link between vaccines and autism, and that the old interview’s mishandling by Radar Online only showed how some people wanted to discredit her.
Wags on Twitter were quick to pounce, noting that McCarthy’s arguments that non-experts shouldn’t dabble in complex medical issues were the height of hypocrisy. Her beliefs are not to be shaken. In 2007, when faced with questions from Oprah about the overwhelming scientific evidence showing no link between vaccines and autism, McCarthy responded with:
My science is Evan. He’s at home. That’s my science.
Evan is now older and doing better. Yet, new evidence is not something McCarthy and her allies will apparently consider.
McCarthy also runs a non-profit called Generation Rescue. In 2011, the organization raised $1.15 million, but spent all but $45,000 on itself. This gives it a charitable rate of 3.9%, meaning only $4 out of every $100 raised goes to programs. McCarthy took no salary, but between salaries for her executive director and staff, accounting fees, office space fees, meetings, travel, and miscellaneous expenses, 96.1% of the funds raised were spent on the organization maintaining itself. Generation Rescue has not been included in the listings on Charity Navigator, but to compare, Michael J. Fox’s Foundation for Parkinson Research has a charitable rate of 91%, with $91 out of $100 it generates going to programs that support its mission.
The damage from this strange situation is hard to assess. Vaccinations are still avoided because of the misinformation Wakefield peddled and McCarthy amplified. McCarthy’s son’s autism may or may not be actual, but whatever label we put on his condition, it clearly was not caused by vaccination.
As Salon writer Mary Elizabeth Williams wrote in 2011, shortly after the 2010 TIME interview was published:
It’s high time the woman who once said that “I do believe sadly it’s going to take some diseases coming back to realize that we need to change and develop vaccines that are safe” took a step back and reconsidered the merits of that increasingly crackpot stance. And it’s time she acknowledged that clinging to research that’s been deemed patently fraudulent does not make one a “mother warrior.” It makes her a menace.
I will leave Penn & Teller to help, once again, take us out of this era of baseless concerns amplified by misguided celebrity stubbornness with their heartfelt (and appropriately curse-embroidered) assessment of the vaccine-autism debate:
They show that celebrities can get it right — that being correct and integrating evidence into your world view is not magic.