If there has been a more harmful urban legend circulating in our society than the vaccine-autism link, it is hard to know what it might be.
Writes Arthur Caplan, Emanuel and Robert Hart Professor of Bioethics at the University of Pennsylvania, where he co-directs the Ethics and Vaccines Project, in an op-ed in today’s Philadelphia Inquirer. Despite no scientific proof to the contrary—-”thimerosal has been removed from vaccines in this and other countries for many years, with no obvious impact on the incidence of autism“—it seems that a connection between vaccines and autism has become entrenched in the public consciousness; has become the stuff of urban myth. Caplan cites more than a few examples of how anti-vaccine advocates have had an impact on public health, and not necessarily for the better:
When one of my students recently conducted a pilot study of attitudes about the new cervical-cancer vaccine, fears about autism were prominent among the reasons many respondents gave for being wary of the vaccine. Friends of mine continue to tell me of parents in Lafayette Hill, Voorhees, Greenville and Downingtown who won’t have their children vaccinated because of the risk of autism. States continue to allow parents to opt out of vaccines on “philosophical” grounds – perhaps the only arena in American public life where “secular philosophy” is given legal standing in public policy. And even some young health-care workers report that they don’t get important vaccines that would protect them, their families and their vulnerable patients against death because of worries about autism and vaccines.
Not science, but distrust—of “medicine, science, government and experts, a distrust that has little to do with scientific studies or expert opinions”—fuels anti-vaccine fervor. A just-published study by Stanford researchers highlights the disconnect between what science journalists report about autism (environmental causes for autism comprise 48% of their reporting) and what scientists actually study (brain and behavior research accounts for 41% of their research).
It is the extent of this “disconnect”—-between scientific evidence confuting a vaccine-autism link on the one hand, and a continued “populist” belief that “vaccines caused my child to become autistic“—-that puzzles and yet intrigues me. Can it be that the “establishment” of scientists have sequestered themselves so far away up in the gleaming ivory tower white of their research labs that they simply cannot hear the stories of parents who again and again offer the simple evidence of their eyes: One day my child was normal. The next day, after the vaccine, he was not?
That said, I will offer up a bit of my own experience which is, I know a vaccine did not cause my son Charlie to be “become” autistic. Indeed, I think he was as he is from the time he was conceived: Charlie has always been Charlie. Just as Charlie was being diagnosed with autism in July of 1999, Jim and I started to read website after website about a connection between the MMR vaccine and autism. We wracked our memories, I checked the journal I have kept from the time I was expecting Charlie, we went over and over the medical records: No.
And yet, when Charlie turned five, we decided not to have him vaccinated. (Despite Jim’s too-obvious statement: “It can’t make him autistic. He already is.”) For an hour I held a sweaty, miserable, screaming, writhing Charlie in my lap as a nurse tried to draw enough blood out of him to have his titres checked. After exchanging some emails messages with other parents, Jim and I wrote a letter seeking a religious exemption against having Charlie vaccinated and even today as I recall the wording of that letter, the lines from the Bible quoted, I know I signed without believing what was on that piece of paper.
“Vaccine” and “autism” had become for me—have become in the public psyche—not merely linked. These two words, which have nothing intrinisically to do with each other, have become equated, and because of coincidence, of a correlation that seems to contain a clue to causation: An 18-month-old child receives her or his immunizations. An 18-month-old child is noticed to not be playing in varied ways, or interacting, or speaking. The parents know they have “done everything” to ensure their child’s health and development, have followed the advice of the pediatrician exactingly, and then some, so it must be some external agent, some mysterious force, that has caused this terrible change in a child. And—-because so much seemed to go wrong when the doctor’s advice and instructions were first followed—the parent, now with not only a “diseased” child but one with hard-to-control behaviors, turns away from traditional medicine and seeks answers elsewhere.
I think, that is, it is possible to understand why so many parents believe in a vaccine-autism link. What I am trying still to understand, is how to dispute such a link; as Professor Caplan’s op-ed suggests, appeals to the evidence of science have yet to be effective.
When I was enrolling Charlie in the school district in the town we now live in back in May, I discovered that a letter stating our “religious grounds” for objecting to his being vaccinated was not going to be accepted without having to take things much farther. We were desperate, not because we have an autistic child, but because we needed to make sure that Charlie was in a school placement as his old school was closing, and the fear he underwent when we kept him out of school in November of 2005 seemed to us much worse than any threated from a vaccine. Late last spring, Charlie received the shots he had not had at the age of 5. He looked at the nurse sticking the needle in his arm, maybe winced a bit. There was no crying and we walked out to the car, and that was that.
Perhaps if more stories of how “a vaccine didn’t cause my child’s autism” were heard, we could start to tease apart the vaccine-autism link and show what strange bedfellows these two have been all along.