By Nancy Hokkanen
Online comments by vaccine injury denialists often seem plucked from George Orwell’s novel Animal Farm, a dystopian allegory in which “some animals are more equal than others.” At the websites of magazines struggling to regain lost market share, the human counterparts of porcine characters Napoleon and Squealer can be found denying medical facts and urging others to discriminate against the vaccine-injured population.
As soon as TV’s “The View” announced that celebrity author Jenny McCarthy might be hired as a co-host (now official), corporate media and internet trolls attempted anew to devalue her in the public eye. Years ago McCarthy stated that her son reacted adversely to the MMR vaccine; after a bout of seizures the boy was revived by medics, and treated by physicians over the years with positive results.
McCarthy is president of Generation Rescue, an advocacy group started by parent volunteers to educate families about safe and effective biomedical autism treatments. Oddly, if you Google “Generation Rescue,” the first title to pop up is a sponsored link from the faux research group Autism Science Foundation. On July 9 ASF reported the groundbreaking news that “Mothers Who Have Children with ASD Show Significantly Higher Levels of Fatigue.”
At the U.S. News & World Report site, assistant opinion editor Pat Garofalo minced no words in his article “Keep Jenny McCarthy’s Vaccine and Autism Pseudoscience Off ‘The View.’” Staff at that publication have backpedaled hard from articles by former health editor Bernadine Healy, M.D., who advocated vaccine program transparency. A former director at the Red Cross and National Institutes of Health, Dr. Healy stated before her 2011 passing, “There are unanswered questions about vaccine safety. We need studies on vaccinated populations based on various schedules and doses as well as individual patient susceptibilities that we are continuing to learn about.”
At the pop-up-laden website of The Atlantic is a piece of work by associate history professor David M. Perry: “Destabilizing the Jenny McCarthy Public-Health Industrial Complex: Giving the anti-vaccine advocate a platform is dangerous.” The article is a cut-and-paste rehash of misinformed generalizations, delivered in loaded semantics. Though Perry’s child has Down syndrome, he attempts to speak for the entire illness-ravaged autism community by saying “they do not need McCarthy’s organization to ‘rescue’ them.”
Most commenters at The Atlantic critical of McCarthy display a lack of scientific rigor, offering emotional opinion as if it were axiomatic instead of providing valid independent evidence. Amongst the clichés, fearmongering, baiting and hating was the predictable call for censorship – ironically from a book author. Stacy Mintzer Herlihy, who with multimillionaire vaccine industrialist Dr. Paul Offit co-wrote Your Baby’s Best Shot: Why Vaccines Are Safe and Save Lives, declared that “[a] small subset of people are utterly immune to reason. Booing them off the stage is a perfectly reasonable tactic.”
Another commenter, “Kfredrick72,” wrote with chilling detachment, “And let’s face it, a tiny percentage of the population IS adversely affected by vaccinations, not so much autism but other complications. That in no way means we shouldn’t be using them. The benefits clearly outweigh the risks.”
There it is – that utilitarian public health meme designed to shut down vaccine safety discussion. But if one pauses to think, one realizes that the stark assertion carries unpleasant ethical implications.
Do vaccines’ benefits outweigh risks? For people who create vaccine policy or do not question it, the answer is yes. For those seemingly unharmed by vaccines or statistics wonks, maybe. For the uncounted victims of vaccine adverse reactions, no.
Such inconsistency is also the hobgoblin of vaccine policy messaging and decisionmaking:
To parents whose child suffers from vaccine-induced autism, public health policymakers’ claims of protecting children ring hollow. Paradoxically many parents now feel they must protect themselves and their families from myopic and insular agency administrators unresponsive to consumer reports of adverse reactions to vaccines.
One example came last fall from Dr. Marie McCormick of the Harvard School of Public Health, who claimed that children with autism are especially in need of immunization in order to “protect them.”
On November 2 HSPH held a forum (webcast here) entitled “Trust In Vaccines: Why It Matters.” The event was held to discuss “the importance of immunization, the safety of vaccines, and the consequences of vaccine hesitancy.” Vaccines were described as a “cost-effective stalwart” and a “target for misinformation.” (One might argue, though, that said misinformation began with the event’s one-sided promotional description, which predictably omitted mention of vaccines’ limitations and failures.)
One of four “expert participants,” McCormick is a professor of maternal and child health at Harvard. Near the forum’s end, at 56:54, an online question was read to the moderated panel:
“With the surprising volume of science and medical evidence that shows a large percentage of children with Autism Spectrum Disease have a range of immune system dysfunction indicators, i.e. physiology, neurology and genetics, can the panel comment on whether continuing investigation should look at how vaccines may intersect to change the trajectory of ASD development, rather than the cause?”
Oddly, the members of the panel responded with nervous laughter; they then looked to McCormick to respond, and off she went. “I actually think that’s asking the question the wrong way,” McCormick said. “First of all, there is no evidence that I know of that says immunization alters anything in the expression of autism. I just – I don’t.
On Friday, October 5 UK reporter Brian Deer gave his second presentation at the University of Wisconsin-LaCrosse, on “Stiletto Journalism: Busting the Vaccine Scare.” Ostensibly a primer on his coverage of the fallout from the 1998 Lancet MMR case series of Andrew Wakefield et al., in reality the presentation was part vanity schtick, argumentum ad hominem, and careful deception.
Seated in the unfilled room were students given credit to attend, and faculty positioned as if anticipating disruption. A muscular bald man sat in front facing the crowd, rather than the podium. Dr. Thomas Pribek, an assistant professor of English whose tweedy appearance came right out of central casting, mentioned having Deer in class the day before. In introducing the speaker, Pribek pontificated that stories garnering an “emotional response dissipate in the fog” but “facts remain in the light of day.”
Perhaps advised about the threatening implication of his chosen title, Deer stated that his use of the word “stiletto” only meant applying great force to a narrow area; he said journalists should use narrow focus rather than broad. The diminutive Brit claimed to have received intimidating emails at times in his career, and he used AIDS denialists as an example of zealotry over public health issues.
Deer announced to his audience that he had uncovered a “secret network of businesses” that would profit from Wakefield’s actions, including the affiliated University. All the information, he said, was “waiting in the public domain,” and took years to unfold because “you have to wait… not dump information.” (Later a student asked whether anyone else would ever have uncovered the MMR/autism story; Deer replied “No.”)
In a puzzling contradiction for someone seeking credibility, Deer quoted his aunt’s advice: “Believe nothing you hear, and hardly anything you see.”
The pejoratives and machismo began early, with Deer describing Andrew Wakefield as “this strange person” and using intimidating imagery – describing a scene from the movie A Bronx Tale in which a mobster beats a Hell’s Angel. Deer took obvious delight in listing the penalties against Wakefield onscreen and verbally, and boasted, “That was a result of journalism.”
Displaying a 2004 photo of Wakefield and Deer, the reporter
admitted he “pursued Dr. Wakefield at Indianapolis.” To the laughter of the
audience, he animatedly asserted that Wakefield covered the camera lens and
ran, adding for humorous effect, “It was all very Edwardian.” Deer claimed
Wakefield “called on parents to boycott the MMR vaccine” and “started the
(Below is a video of parental experience at an event in protest of the Deer appearance.)
At times the balding presenter used risqué language on the young audience, saying there are only two things he likes: “One is sex and the other is reading my name in the newspaper.” Deer said that after the BMJ ran its January 2011 article on Wakefield, a Harris poll showed that 145 million Americans “knew the fundamentals of the story” and his work had “a massive impact on public opinion.” Knowing that newspaper presses across the U.S. were running his story, he “felt a great honor at the time.”
(On a related note, students of journalism should look up which U.K. and U.S. newspapers once promoted a false link between Saddam Hussein and the 9/11 World Trade Center attacks.)
Next came comments discrediting the UK parents. Onscreen appeared a photo of Isabella Thomas and her two boys; according to Deer, who is not a medical professional, “neither had autism… it turned out they didn’t have it.” He said he filmed Jodie Marchant, and discussed her daughter’s digestion problems in repulsive detail. Marchant, he said, had made allegations against a doctor and a nurse; he noted without a touch of irony, “You can’t broadcast anybody’s unsupported allegations against anybody.”
Then Deer moved from parents to professionals. Dr. Richard Halvorson was maligned for selling single vaccines. Journalist Lucy Johnston was criticized for writing articles that provided Wakefield’s point of view (along with quotes from another MMR researcher, Dr. Vijendra Singh). Again, Deer seemed unaware of the self-incriminating implications when he proffered, “Newspaper [reporters] believe they have to climb on board and become public relations people.”
(Editor's note: Please welcome Nancy Hokkanen as Age of Autism's newest Contributing Editor. An astute observer and wonderful writer, she lives in Minnesota with her husband and their much-loved 14-year-old son. For ten years she has volunteered for several autism advocacy groups, co-moderates a biomedical treatment listserv, and was recently appointed to the Canary Party executive board.)
By Nancy Hokkanen
Ten years ago my son received the diagnosis of autism. At age four his future was uncertain, so for years I felt that I needed to be his voice. But nowadays I ask his permission regarding what I write or say about him publicly. Here, for example.
To my great relief, my son can now speak and write for himself. Unlike so many other kids on the autism spectrum, my son is verbal. Sometimes too verbal, invective-wise. He’s taken a novel-writing class. Hey, he can use “de facto” in a sentence.
I say this not to boast, but to share hope with others wondering what their child might achieve some day. My son’s expressive language skills developed in part from biomedical treatments, speech therapy, educational TV, and hour-long phone conversations with peers about video games. And let’s not forget YouTube!
As Hokkanen the Younger grows physically, academically and psychologically, so too grows his desire for independence. Like others his age he wants to make his own choices – a laudable goal. But what if he doesn’t realize that those choices could hurt him? I’ve spent 14 years protecting my son from falls and choking and bugs and bad weather. I’ve also sheltered him from people who don’t understand autism, and from those who use the issue for selfish purposes.
The truth is, I can’t protect my son forever. Sometimes we autism parents must decide to let our kids learn from their own mistakes… but of course, only to a point. Obviously someone who’s more mentally challenged or has oppositional defiant disorder will need very firm guidance for safety protection. Parents’ knowledge of their children’s individual affects and limits is a static and priceless commodity.
Recently I consciously decided to let my son get his first uncomfortable sunburn. Before he left home to go swimming with a friend’s family, his father and I had wanted to apply sunscreen to his pale Nordic skin, like always. He refused. We ordered him to let us apply sunscreen. He refused. A ritual of parental caring had just become a personal civil rights issue.
I considered our options:
My son argued his case. “I just want to have the experience so I’ve learned my lesson and I won’t do it again,” he told me. “I understand that some experiences are ones that I can’t do again. Like jumping off a cliff.”
Telling the lad he couldn’t go swimming seemed an overreaction, so I analyzed the conditions and variables involved in swimming without sunscreen. The TV weather report said the day’s UV rating was low. Dad and I estimated the amount of time he’d actually be in the pool and decided that, even with water reflection, any potential sunburn to nose and shoulders would not be dangerous or particularly painful… just uncomfortable. My husband and I had grown up without benefit of sunscreen, had gotten sunburned many times and survived, but back in those prehistoric times Planet Earth had a thicker ozone layer.