Tuesday evening I got a call from CBS-TV to be interviewed about “vaccines.” Just that one word was enough to tell me that what was being referred to was the retraction of the 1998 Lancet study linking the MMR vaccine to autism by Andrew Wakefield et al.. The study—conducted on only 12 children, about whom Wakefield was said to have shown a “callous disregard” in a ruling handed down by the UK General Medical Council last week—claimed that the measles vaccine might be linked to inflammatory bowel disease, and that this might be connected to autism. While not specifically saying that there was a link between the vaccine and autism, the paper led to an international scare about the MMR after Wakefield announced at a press conference that he thought the measles, mumps and rubella vaccines should be given in single doses. The Lancet had issued a partial retraction of the paper in 2004 and argued that publishing it was acceptable as Wakefield et al. raised “‘new ideas.’” What the journal’s editors did not, it seemed, yet know was that Wakefield was being paid by lawyers representing families who claimed that vaccines had injured their children, a serious conflict of interest.
Had The Lancet‘s editors chosen not to publish the 1998 study, the whole panic about the MMR may not have happened; too, the fear and distrust that can now be regularly detected in parents of young children at the word “vaccine” could indeed have been avoided. Vaccination rates among children declined significantly in the UK in the wake of the 1998 study and have yet to come back up. As noted in the LA Times’s Booster Shots blog, “since the paper’s publication, millions of dollars of research funds that could have been spent looking for the causes of the disorder have instead been diverted to investigating the potential link to vaccines.”
Indeed I can think of more than a few areas in which those research dollars might have been better spent, on, for instance, studying augmentative communication possibilities for those like my 12 1/2 year old son who have significant speech and communication impairments, or who cannot talk at all, or for investigating how to better deliver services for autistic individuals—including adults as well as children—to support them and their primary caregivers in their homes and in the community, rather than in institutional settings.
I said no to CBS tv’s interview request. They wanted to bring over a crew to my house within an hour. My husband and I are our son Charlie’s primary caregivers; my husband was working and there was no one to watch Charlie should a producer and a cameraman show up. Also, some who have publicly stated that the scientific evidence increasingly refutes a link between a vaccine-autism link have been subject to threats of violence. University of Pennsylvania School of Medicine professor Dr. Paul Offit, author of Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure has received such threats; he has also noted that people have told him they knew what schools his children went to. Being the parent of an autistic child, and a parent who has publicly stated that there is no link between autism and vaccines, it would have been the height of irresponsibility for me to have my house (not to mention my child) on the 11pm news in the New York/New Jersey metropolitan area.
It all goes to show how deep-rooted a purported vaccine-autism link has become lodged in the popular consciousness. I wish the Lancet‘s retraction of the 1998 study had happened years earlier.
It’s high time now to start spreading the word that, yes, there is no link between vaccines and autism and to foster real understanding about what autism is in the public.
See below for more background to the vaccine-autism issue and Andrew Wakefield’s role in the MMR scare.
Back in the late 90s when I was expecting my son, charts of when “baby should get his vaccinations” were a regular feature of every baby book and parenting magazine thrust my way. Recalling sitting (not without trepidation) on the exam table in Dr. Lee’s pristine office waiting for the cat’s eye-glassed nurse swabbed my arm with alcohol, I figured that, once a mother, I’d try to stand just as reassuringly as my own had, prior to the administration of the feared injection.
My son Charlie was born in May of 1997 and proved to be a far less docile, and much more wriggly (not to mention several percentiles bigger), child than my sister and I had been. More than a few nurses had to hold him down so he could get his vaccines—not an easy thing for any parent, let alone a very new one, to do. I wonder how many parents would go through this without the kindly assurances of “this is all for baby’s health.”
Accordingly, the uproar and the fury felt by many a parent of an autistic child who believes a “vaccine did it” —i.e., “made” their child become autistic—have always seemed to me to be understandable, albeit in contradiction to the scientific evidence. Whatever suspicions some have about vaccines are only fueled by a smoldering sense of outrage, that “here one was doing what the experts, those medical professionals, said to do and look what happened.”
Charlie having been diagnosed with autism in July of 1999, the increasingly discredited claim that vaccines can be linked to autism has been something we’ve been hearing about for as long as autism has been part of our lives. My husband Jim and I went so far as to carefully scrutinize my journals of Charlie’s baby and toddlerhood and copies of his medical records (from the St. Louis hospital where he was born and his pediatricians’ offices) and listened to Jim’s sister talking about finding out batch numbers of vaccines. And yet with every day, as we worked on teaching Charlie and finding educational programs and therapists for him, and on getting him to pedal his tricycle and do something else with his blocks besides arrange them in 2-d patterns on the floor, it was becoming apparent to us, that Charlie as he was (and as he is) had always been Charlie (and so he would always be).
It was in February of 1998 that Andrew Wakefield and two other doctors at the Royal Free Hospital in London published a paper in the Lancet medical journal, that, drawing on case studies of only eight children, said that the measles vaccine might be linked to inflammatory bowel disease, and that this might be connected to autism spectrum disorder. The paper did not specify a definite link between the vaccine and autism, but, at a press conference, Wakefield, “told the world he believed the measles, mumps and rubella vaccines in the MMR jab should not be given in one combined shot, but in single doses, preferably a year apart.” As many have noted, Wakefield’s words fueled the MMR scare that was “the direct cause of the major slump in take-up of MMR which has led to outbreaks of measles in some parts of the [UK].” Last week, it was announced that, after a 2 1/2 year investigation, the General Medical Council in the UK had ruled that Wakefield was “unethical” and had acted “dishonestly and irresponsibly” in his conducting his research. Dr. Steven Novella at the Neurologica blog reviews the Wakefield story and the ruling; Kathleen Seidel at the Neurodiversity blog has links to the Lancet and excerpts from the GMC’s decision; see Liz Ditz for a list of media reports and blog posts. (For what it’s worth, I’ve a few links to some of my previous postings about vaccines and autism here.)
In the past decade, few topics have brought more differences of opinion, and angry exchanges than the vaccine-autism issue. We don’t know what causes autism and we don’t know how best to treat autism: Arguments rage with equal energy about using “special diets” and other biomedical interventions, and about different teaching methods (for the record, we’ve tended to find behavioral teaching has been most effective for Charlie, leavened with some good doses of what would be called “developmental” methods); every time we give Charlie his various medications it still often feels a bit like we’re doing an unofficial science experiment; many, many genes have been identified as possibly connected to autism, but nothing conclusive has been found.
You can’t blame anyone for hoping that there might be some simple, straightforward answer about what causes autism and what to do about it.
I for one was not surprised by the GMC’s rulings about Andrew Wakefield. It remains to be seen if he is struck off the medical register and is no longer allowed to practice medicine in the UK. I’m in no triumphalist mood though at all this, but rather sad and a bit weary knowing that the back-and-forth between those who think vaccines or something in vaccines can be linked to autism and those of us who have been pointing out the opposite will continue. Wakefield now resides in the US as the Executive Director of Austin-based Thoughtful House, which “[fights] for the recovery of children with developmental disorders through the unique combination of medical care, education, and research.” We certainly will be hearing more about him and from him here in the US, and I do think that the GMC’s rulings will only fuel his martyr-status and the sense that he is some sort of “crusader” who is fighting for the little guy, the disenfranchised parents of autistic children who feel that medical professionals and experts “just don’t get it.”
Take a look round the web and it’s apparent how many parents, seeking to keep their children healthy, have at least suspicions about vaccines (and, in some cases, forego them entirely). All the attention, if not hype, give to the notion that vaccines might be linked to autism has proved an enduring diversion from discussion about the really pressing issues that face individuals on the autism spectrum and with disabilities: Supports and services, solid education programs, places to live and jobs to work in, and much, much more. As long as we—not just the media—keep, as it were, perseverating on the “vaccine issue,” we hinder the potential to move public discussion and understanding forward about the realities facing autistic individuals and those who care and support for them.
Photo of syringe by Andres Rueda.
Kristina Chew, Ph.D., is Associate Professor of Classics at Saint Peter's College in New Jersey. Since 2005, she has been blogging about autism, disabilities, and education, previously at Autism Vox and now at We Go With Him, a daily journal about life with her 12 1/2 year old son Charlie.
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