Originally Posted March 8, 2011 by Steve Silberman in NeuroTribes blog.
Two things that the anti-vaccine movement offers to parents of kids with Autism Spectrum Disorder that the pro-vaccine forces generally don’t, Seth Mnookin says, are answers and a supportive community.
As the author of The Panic Virus, a compelling history of the misguided rebellion against one of the most significant medical breakthroughs of the 20th century, Mnookin is acutely aware that no reputable study has linked vaccines — or mercury-based preservatives like thimerosal — to autism in children. On the contrary, the many researchers who have looked for such a link have failed to find one. The alleged “answers” offered by the anti-vaccine community are often illusory, he points out.
But for parents struggling with their child’s diagnosis and disability, a network of people eager to listen to fears and practical concerns about raising a kid on the spectrum can help relieve profound feelings of isolation.
The Panic Virus is a must-read for anyone interested in how rumors, conspiracy theories, and misinformation can drown out the cautious voices of evidence-based medicine in the age of he said/she said media, when “safe vaccine” advocate Jenny McCarthy touts medical expertise earned at “the University of Google.”
Chronicling the events following gastroenterologist Andrew Wakefield’s now-infamous 1998 press conference in London implicating the MMR vaccine — based on a 12-case series that has been retracted by the editors of The Lancet and branded “an elaborate fraud” by the British Medical Journal — Mnookin brings to light the fabrications that ignited a global firestorm of fear about vaccines.
Aided by a scandal-hungry press and credulous talk-show hosts eager to ladle on the kerosene, the blaze of paranoia sparked by Wakefield’s lies resulted in plummeting immunization rates in the UK and the resurgence of childhood afflictions like the measles, previously kept at bay.
Mnookin’s book is scathing in its condemnation of the media’s failure to promptly scrutinize Wakefield’s unethical research methods and blatant conflicts of interest, including a patent filing for an alternate measles vaccine formulation months before announcing the results of his study. For a long time, Wakefield successfully deflected criticism from his peers by presenting himself as an embattled visionary — a hero putting himself on the line for parents of autistic kids when heroes were desperately needed.
One of the reasons that Wakefield was able to pull this off is that the history of vaccine development is more troubled than some anti-“anti-vaxxers” are eager to admit. To Mnookin’s credit, he doesn’t whitewash this complex and occasionally shameful history. The Panic Virus includes vivid accounts of the Cutter incident, in which several thousand babies were injected with live polio virus by accident, and the 1976 swine-flu debacle, in which hundreds of recipients of a vaccine for an epidemic that never materialized became ill with Guillain-Barré virus, resulting in 25 deaths.
But Mnookin is also very clear on the fact that passing laws to make the decision to vaccinate a matter of individual conscience — as some parents’ groups are demanding — could fatally weaken herd immunityand reopen the door to the kind of mass epidemics that regularly swept the globe until the mid-20th century, killing and maiming millions. To a freshly mutated H1N1 virus in the wild, all unvaccinated kids are in the same community: lunch.
Thankfully, Mnookin writes with compassion of the predicament of parents frustrated by the lack of definitive knowledge about what has caused their son’s or daughter’s disability. Though the genetic basis of most cases of ASD is well established (the author of a major study published last week, Peter White, estimates that there may be “hundreds of genetic pathways” to autism) science has yet been unable to pinpoint the environmental trigger that tips the balance in susceptible children — if, indeed, one exists at all. The fact that identical twins who share the same genes are usually, but not always, “concordant” for ASD leaves open the possibility that some precipitating factor in the environment has eluded detection.
As the father of a 15-month-old boy, Mnookin says he can relate to the feelings of parents who are frightened for their children’s safety — particularly when they’re encouraged by a flood of fear-mongering books like David Kirby’s Evidence of Harm and a steady trickle of lazily unreported news stories that keep Wakefield’s hoax alive.
“It’s tempting to place the blame for the state of affairs squarely on the shoulders of people like Andrew Wakefield,” Mnookin writes. “But that’s the easy way out: Wakefield may have provided the spark, and any number of other charlatans and hucksters might have fanned the flames, but it’s the media that provided — and continues to provide — the fuel for this particular fire.”
I spoke with Mnookin about ways that the media could have been smarter in handling the Wakefield story, why recent attacks on the integrity of science and scientists pose a major threat to public health, and how the “autism community” — often portrayed in the press as a monolithic group of enraged Jenny McCarthyites — is a more diverse and open-minded group than stereotypes suggest.
Steve Silberman: Was there a moment in your reporting when you could relate to the fear that some parents feel about vaccines, despite multiple studies showing that vaccines and the mercury-based preservative thimerosal do not cause autism?
Seth Mnookin: I felt it viscerally when my son got sick with croup, which makes infants gasp for breath and sound like they’re suffocating. We were up all night in the bathroom with our son, running the shower with the window open. The next morning, we called the doctor’s office. They said they’d get back to us in a half an hour, but they didn’t. We finally got an appointment and a prescription, but they wrote it wrong — which we only figured out after we filled it. By then, the doctor’s office was closed again.
They told us the prescription was for three doses, but the total amount was for less than one. So we didn’t know which figure they’d gotten wrong. We were trying to get in touch with the doctor after hours, while trying to look up the proper dose for my son’s weight. I did everything I was supposed to do, but I just had this moment like, “Doctors just go about their business — they don’t give a shit about what we’re going through! My kid sounds like he’s choking to death!”
Obviously, croup is not chronic. It doesn’t even last a week. I’m certainly not comparing it to autism. But I did feel like, “How can I trust that the doctor is going to do the right thing tomorrow?” I knew I was being irrational. Even doctors are human and make mistakes. But that was the moment that I felt the anger some parents are going through, particularly those who have kids on the severe end of the spectrum. Doctors basically tell them, “We have no idea what we can do to help your child.”
I think that’s what makes the anti-vaccine movement appealing to a lot of people. Tying autism to vaccines is almost secondary to “Here’s this community that holds out the possibility of answers to all the questions I’ve been wanting answers for.”
Silberman: For many parents, having an autistic kid can feel like a lonely journey. They have to fight for access to any support system they can get for their family, and it’s getting even harder in an age when social services and special-ed programs are coming under fire in the name of fiscal responsibility.
Mnookin: A huge thing for parents in the anti-vaccine movement is the emotional support. The talk of cures and biomedical interventions is almost secondary to the feeling of connectedness with other parents. A lot of the appeal of the community is just being able to talk to people who can relate to what you’ve been through.
Silberman: Yes, particularly after the psychiatric establishment spent decades blaming “refrigerator mothers” for autism based on the bogus theories of Bruno Bettelheim. Is there something about the way that autism presents — in some cases, emerging as a dramatic regression at the age of two or three — that makes vaccines look like the culprit?
Mnookin: Well, that’s the age when kids get a lot of their shots. But it’s more than that. Let’s say you’re a parent — one of those parents who wants your kid to become president or an astronaut someday. When your kid is very young and still a blank slate, you can indulge that fantasy to the hilt. But by the time they’re a teenager, you probably have a good idea that they’re not going to be an astronaut. They have their own personality by then. In our culture, there’s so much grafting of parental hopes, ambitions, and aspirations onto children. Because autism is diagnosed at a time when kids are still blank slates, it can be especially heartbreaking for parents, and it’s very unsatisfying for them not to be able to say that it’s caused by A, B, or C.
Silberman: Do you think that if Wakefield published his Lancet paper today, it would have the same effect? Sometimes I think that if he was making his claims about the MMR vaccine now, someone with a science or medical blog [like Ed Yong, Ivan Oransky, PalMD, or Marya Zilberberg — S.S.] would quickly notice that the study doesn’t provide adequate support for his sweeping claims, and the rest of the story would not unfold in the ways that it did. Other times I’m not sure, because the world of information consumers is much more polarized now than it was in 1998, thanks to partisan propaganda operations like Fox posing as news organizations. As journalists, what kind of resources could we build now to ensure that blockbuster medical claims based on junk science don’t snowball into huge problems for society?
Mnookin: I’ve talked to some of the reporters who covered the Wakefield study for the daily papers at the time, and they justified their actions by saying “Well, we didn’t know all the things we know today about his conflict of interest and his patent…”
That’s bullshit. What the story should have been was that this researcher was making a recommendation based on a 12-person study that relied on parents’ post facto recollections. That seems completely outrageous to me. It’s not only Science Online bloggers or journalists with science backgrounds who should be able to recognize that for what it is.
Why didn’t anyone just stand up and say, “This is absolutely preposterous!” All those newsroom excuses — you’ve got to “cover the controversy,” “if it bleeds it leads” — whatever! It seems to me like it was controversial enough to have some doctor go completely off the reservation and make these outrageous claims with huge implications for public health. That’s a good story.
Silberman: Reporters could have mined a different vein of controversy.
Mnookin: Exactly, from the get-go. And it’s not like they would have had to go back to their desks and start reading through a decade of virology papers. Someone at the press conference could have simply said, “What are you talking about? This study is like 12 kids. You’re basing your conclusions on what the parents said happened years earlier? That’s crazy.” There might have been a huge amount of blowback that there just wasn’t at the time. I go back and forth about being optimistic or pessimistic about the power of online corrective mechanisms in place when you have a scare story really take off…
Silberman: Bloggers and other media watchdogs don’t seem to be very effective in limiting the impact on public opinion of the anti-scientific nonsense of climate-change deniers.
Mnookin: Yeah, exactly. And climate change is something for which we have a lot of tangible evidence. By 1998, most people had no memories of kids dying of whooping cough or of a measles epidemic quarantining an entire neighborhood. Everyone knows now that Wakefield study was full of crap, and still so many parents — including my liberal neighbors in Park Slope — are like, “I don’t know. Vaccines just make me nervous.”
Silberman: What was it about the culture of the historical era that we grew up in that has made it so easy for parents to believe that pharmaceutical companies, government agencies, doctors, and the press are all colluding to cover up a massive scandal about autism and vaccines?
Mnookin: Reading about things like the Salk vaccine field trial when I was writing The Panic Virus, I remembered that more people knew about what Salk was up to than knew Eisenhower’s full name. Medicine and science were the two most esteemed professions. But what a huge, huge pendulum swing there has been since then, from our parents’ generation to our generation.
During the Cold War and Cuban missile crisis, science went from being a force for good to something much, much more ambiguous. The same thing has happened with pharmaceuticals. There’s a lot of fear now because of the medicalization of everyday conditions, the Vioxx recall, and all sorts of drugs and devices that turned out not to be adequately tested, or were rushed through the approval process. That’s so different from what people’s feelings were when everything was like, “Hey, penicillin! Now we can save the lives of another 30 million people.”
Silberman: Magic bullets.
Mnookin: Right, one magic bullet after another for the first half of the 20th Century. No wonder they thought they’d have a cure for cancer in ten years. And on top of that, political institutions are no longer given the same deference. It wasn’t just Watergate. We all know what Kennedy was doing in the White House, but we didn’t actually have to read stories in the paper about him getting blowjobs. Instead of putting people on pedestals, now we tear them down. This has been an enormous cultural shift.
Silberman: There’s been a skilfully orchestrated campaign by the right wing to not just marginalize the whole concept of expertise and authority, but to demonize it. Their corporate masters want no accountability or social responsibility whatsoever. So the EPA is bad, climate scientists are bad, environmentalists are bad, college professors are bad, schoolteachers are bad, unions are bad — even lay people who care about science are bad, another “partisan special interest group.”
Mnookin: Yes. In the days of the Kennedy administration, the word intellectual was not a slur the way that it is now. Now the whole idea is that to be trained in something, to really know about a subject, to have specialized expertise in a particular field — that’s “elitist.”
Silberman: Right. And that attitude isn’t limited to Rush Limbaugh’s audience of dittoheads. Some voices on the left are also guilty of caricaturing reporters and scientists as nothing more than corporate apologists“on the take.” When I posted links to the British Medical Journal condemnation of Wakefield online, both liberal hippie friends and red-meat conservatives rushed in to claim that any journalist who writes a story questioning the notion that vaccines are the cause of autism is a patsy for the pharmaceutical companies.
Mnookin: I can’t tell you how many times I’ve been accused of being a shill for Big Pharma. Depending on how conniving people think I am, I’m either naive and have been co-opted, or I’m being paid off — Merck is supposedly wiring money directly to my bank account.
Silberman: What’s the most surprising reaction you’ve gotten to The Panic Virus?
Mnookin: Thus far, the reactions I’ve gotten from people who have some direct personal connection to autism have been one-for-one: people who hope I die, and people who are very grateful that someone has written something like this that makes clear that the entire autism community is not fixated on vaccines. I expected the reaction to be much more heavily weighted toward the negative, because people are more likely to write when they’re furious than when they’re pleasantly surprised. So I think it’s likely that the reaction is much more positive than I feared. I don’t think that says anything about my book, it just says that many people’s perceptions of the “autism community” as a monolithic entity are very skewed.
Silberman: You mentioned in a recent interview that the manuscript of your book was originally twice as long. Are there any stories that you wish you hadn’t taken out?
Mnookin: I had a whole section on implantation of false memories and…
Silberman: Oh, did you write about Elizabeth Loftus, the professor who studies memory manipulation? William Saletan did a fantastic piece on her on Slate.
Mnookin: Yeah, yeah. I had a whole section about her and this guy in Canada who’s doing similar studies. Just the enormous implications of the ability to implant false memories — across all areas of our lives, all the implications in terms of how we think about ourselves, and about our experiences.
Silberman: How is that relevant to vaccines?
Mnookin: Getting back to the Wakefield study: when you’re relying on after-the-fact recollections, and those are being gathered in interviews with someone saying Did this happen at this time? or Did this happen in this way? if the person being interviewed is getting subtle cues that the person asking the questions wants a certain answer, it’s much, much easier to have that answer seem like the right one to that person unconsciously.
That’s what struck me about the emotional connectedness of some of these autism conferences — you have the phenomenon of people getting together and discussing similar experiences and saying, “Is this how you remember things?” Not for any nefarious reasons, just sharing their experiences. So I wanted to get that in. But I felt like the book ran the risk of just becoming too big and unwieldy. It started to feel like a bunch of chapters in a textbook instead of a coherent narrative. A writer more talented than I am might have been able to pull it off.
Further reading from PLOS:
Vaccine Hesitancy Collection Multidisciplinary Perspectives on Vaccine Hesitancy and Contemporary Vaccination Coverage; PLOS Currents, Outbreaks (2015).
A Broken Trust: Lessons from the Vaccine–Autism Wars by Liza Gross, PLOS Biology feature (May 26, 2009)
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