Ante Up For Autism
Ante Up For Autism (Photo credit: Wikipedia)

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 syndrome, which is 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.

Enhanced by Zemanta
Kent Anderson

Kent Anderson

Kent Anderson is the CEO of RedLink and RedLink Network, a past-President of SSP, and the founder of the Scholarly Kitchen. He has worked as Publisher at AAAS/Science, CEO/Publisher of JBJS, Inc., a publishing executive at the Massachusetts Medical Society, Publishing Director of the New England Journal of Medicine, and Director of Medical Journals at the American Academy of Pediatrics. Opinions on social media or blogs are his own.


38 Thoughts on "Vaccines and Autism — Despite a Widely Publicized Scientific Hoax, Celebrity Continues to Dominate the Evidence"

The persistence of bad ideas is not exactly a mystery and there is a robust scientific literature on it. You recently posted survey results indicating that most people are mildly skeptical about science, while some are actively hostile. Moreover, the vast majority of people are not scientists and they communicate informally, especially about health issues. So once a diffusion process gets going it takes a long time to unfold. In that context it is not surprising that the half life of a bad idea can be pretty long, as can the much longer tail of small scale persistence. Some bad ideas never go away completely.

Except that graph addresses the wrong issue. The issue is not whether it is warming but what role humans might play in that, now and in the future? This is the case I have studied most closely. There is actually a deep scientific debate in there, buried in all the political rhetoric. So the graph is a good example of people on one side failing to understand the reasoning of those on the other side. It cuts both ways of course, so there is a great deal of talking past one another.

It has always puzzled me that the autism-caused-by-vaccine meme went in different directions in the UK vs the US, despite being sparked by the same fraudulent paper (authored, as you note, by a UK-based physicians and published in the UK-based Lancet). In the US the concern was (as you note) that the preservative thimerosal was the trigger for autism onset, and therefore any vaccine that used thimerosal was suspect. In the UK, however, the media and various advocacy groups (thankfully without the backing of any notable celebrities or “celebrities”) focused not on thimerosal but on the combined measles, mumps, rubella (MMR) vaccine (which had recently come into wide usage there), with the notion that there was something about combining these three vaccines in one that caused a trigger for autism onset. The same paper therefore caused two separate autism scares that each took on a life of their own. Advocacy groups in the UK were convinced there was something wrong with MMR and those in the US were convinced there was something wrong with thimerosal. Thus advocates who persisted in making the autism link after the preponderance of scientific evidence indicated there was none, could not even ultimately agree on whether the MMR combination or thimerosal was the triggering mechanism. I’ve long thought an enterprising sociology grad student could make an interesting thesis study on this topic.

Good point. I can think of three hypotheses to test. First is the difference among Wakefield’s papers. Second is the difference in how his views were reported. We recently had a post about how a simple sentence in a press report set off a wave — Facebook is dead. The third is how the advocacy groups are organized.

There is in fact research on the scare, but maybe not on the distinction you mention, Michael. Here is an article on the MMR scare: “The Blame Frame: Media Attribution of Culpability About the MMR–Autism Vaccination Scare” in Health Communication, Jan 2012.

The authors are all American so perhaps the MMR scare is not so geographically isolated as you think. But a Google Scholar search on autism and vaccinations does show that both scares were investigated.

This particular issue is one where logic, fact and science will continue to fail because it argues against what people want to believe. Humans want there to be an explanation, they want the condition to have been preventable and they want to assign blame. When the condition effects their child the reasoning portion of the mind is even less likely to be changed by facts.

Given the choice between their child’s autism having been caused by a specific action or, the cause of autism being unknown people will cling to the mythology like a lichen to a stone.

Are you suggesting that wanting there to be an explanation is wrong? Isn’t that what science is all about? When seven billion people try to decide what the truth is lots of things happen. In fact condemning belief is not the same as understanding it, quite the contrary. I am reminded of the old joke that everybody is crazy except you and me, and sometimes I have my doubts about you. I assume that Kent’s post is one of inquiry, not merely condemnation. What then is the question?

I think it’s very human to want answers. That does not mitigate the harm that can happen as a result of that drive, particularly when people seek simple answers to complex problems, and continue to stick to those answers in the face of enormous evidence that they are inaccurate.

Of course. It is the essence of rationality to look for answers and we make many mistakes along the way, science included. And stubbornness in the face of seemingly contrary evidence is also often a virtue. These traits, like all traits, can be harmful when they go awry.

It is also important that the weight of evidence is a personal matter, so reasonable people often disagree. For that matter McCarthy may be part of a community of like believers. Then too there are probably counter arguments in that community that we have not considered, such as that this is a drug company coverup. The point is that scientific belief itself is a very complex business.

What I do not understand is what this has to do with scholarly publishing? Is it just that publishers are not in a position to correct erroneous beliefs in the general population? Or what?

I’d say it relates in the same way this post relates:
The peer review system in place for scholarly publishing makes things like the Wakefield paper a rare event. Yet, we see continuous challenges to the way things are done which often include suggestions of moving the review process to the post-publication stage. If we are to think about that, it’s worth considering how hard it can be to correct a narrative after the fact, and at least in this case, the damage that can be caused by false information being released with the stamp of the scientific community’s approval.

Good point but this was not mentioned in the post, hence my confusion. In regulatory systems it is common to have higher levels of attention for more dangerous cases. Medical device manufacturing, FDA rules for QA, is an example. Pacemakers get more attention than pillows. Perhaps we need this in peer review.

This is a classical example of celebrities misusing their influential power on the public. Similar incidents do keep happening in developing countries against polio vaccine which should have eradicated polio long ago! Whether its religious fundamentalism or an individual celebrity’s displaced grief or despair, millions of misinformed families will have to pay the price!v

If people believe what they say how is it a misuse of their power? Aren’t we all supposed to to the best we can with what we have?

You must be kidding. By that logic the Nazis who truly believed Hitler’s ravings were not misusing their power…

You may be right but I make a distinction between people who know they are doing evil and people who do not know it.

What does that have to do with the question of whether or not an example of rhetoric constitutes a misuse of power? You have strongly implied that the proper use of cultural power is established by its persuasiveness, and Mike F responded by pointing out one logically inevitable implication of that position. Are you going to try to defend your point, or try to deflect attention from it by changing the subject?

I made no such implication, Rick. (You and I seem to speak different languages, as it were.) My point was that people who have power have an obligation to try to use it for good. If they make an honest mistake in that attempt it is not clear that is an abuse. This is about the concept of abuse. I am doing concept analysis, which is my field.

The question raised was about celebrities misusing their cultural power. You questioned whether the misuse of power can be categorized as a “misuse” if the motives driving it are sincere (“If people believe what they say how is it a misuse of their power?”). Now you’re saying that those who have power have an obligation to use it for good. Which is it? Do those with power have an obligation to use it wisely and intelligently, or only to have good intentions?

One cannot have an obligation to be wiser or more intelligent than they are, so the distinction you are drawing may not exist. As I mention below there is probably a standard of reasonableness involved here (just as there is in insanity). Thus if your error is unreasonable then it is abusive to act on it. (If it is too unreasonable then you are insane.) But doing a decent analysis of these ethical concepts would be a major project. Maybe we can get a grant.

One can certainly have an obligation to be better informed than he or she is (before making public pronouncements, especially from a privileged bully pulpit), and that’s what is at issue here.

I am not familiar with this case but I suspect it is a difference of opinion, not a lack of information. This looks like a community of science dissidents. Different people can look at the same evidence and come to opposite opinions.

Just because it’s a difference of opinion doesn’t mean it’s not also a lack of information. When a science dissident says “My science is my son,” she’s speaking–willfully–from a lack of information (as well as, perhaps less willfully, a profound misunderstanding of what constitutes “science”).

The point is that science dissident communities typically know the science well and have elaborate counter arguments to the mainstream view. Thinking that McCarthy’s outburst is all there is to it is a mistake. this is why I began wondering early on if there was a community.

Sorry, my mistake — when you said “people believe what they say,” your “they” apparently referred back to the speakers, not to the hearers.

Your point is still deeply questionable, though. You’re suggesting that any use of power that arises from sincere belief shouldn’t be construed as a misuse. Is that truly what you believe?

I see my pronoun was ambiguous. You might like to know that this is a major problem in machine reading. In any case I said Mike might be right to question my analysis. This is a fairly hairy ethical and legal issue, involving the role of intent in culpability. When does error become abuse? I do not know. There is probably a standard of reasonableness in there somewhere. My concern is that this sort of pejorative rhetoric occurs frequently in policy debates, with each side accusing the other of abuse, so I am sensitive to it.

nterestingly it appears that there is still evidence of some sort of vaccination autism link. See for example: “A Positive Association found between Autism Prevalence and Childhood Vaccination uptake across the U.S. Population” in Journal of Toxicology and Environmental Health, Part A: Current Issues, Volume 74, Issue 14, 2011.

Of course correlation is not causation, but the presence of a debate is at least perhaps understandable. Uncertainty typically creates a divergence of opinion.

That DeLong item (which I mistook for Tomljenovic & Shaw in a comment that has yet to appear) is shockingly bad and was dissected at the time in a number of places. Merely reading the abstract will reveal that she deliberately lumps together autism and speech/language disorders and then, hey presto!, it’s autism. I’m stunned at the level of credulity that would count this as “evidence,” particularly given the overwhelming weight of the evidence that there is not even correlation, much less causation, and what one would expect to be conversance with the literature in general.

Liz Ditz catalogs six entries on DeLong from four sources (item 4) here:

You may be missing my point. I study the diffusion of scientific information, including bad information. When something like this gets going anything that appears in a major journal certainly counts as evidence. My point is that this is clearly a much bigger problem than simply one doctor and one celebrity. I see from your comment below that my conjecture that there is an entire community involved is correct. So it is not a question of how can one person believe something so silly, far from it. Understanding this complex (and unfortunate) situation scientifically might be useful, better than simply ranting about it.

The Internet and especially the blogosphere has facilitated this kind of cognitively dissonant community building. The point is that if you do not understand their reasoning you probably will not be effective in countering it.

The “reasoning” *is* understood: it’s sowing FUD, which is precisely what citing DeLong as “evidence” does.

While I may have missed your intent, I don’t think I misread your actual comment: “[I]t appears that there is still evidence of some sort of vaccination autism link.” There is no shortage whatever of slipshod material being churned out in this realm. I do not believe that I engaged in any “ranting.”

It is also unclear to me what about the “situation” is left to be “scientifically” understood. The social dynamics have been examined, but I would first like to ask how you arrived at DeLong as the item to cite. The context was one of the necromancing of the Landau-Kleffner story by an (apparently) popular media outlet. How does one get to J. Toxicol. Environ. Health A from there? I can’t find a single news story that picked up on it, which suggests that the “entire community” has sprung forth as a “conjectural” entity post hoc.

I did a Google Scholar search on autism and vaccination and the paper appeared on the first page of results. Thus it was highly ranked. The structure and dynamics of complex issues is my field and I see people saying a lot of incorrect things about the logic of situations like this, including here. How this sort of movement can emerge and thrive is as yet poorly understood, in part because complex reasoning is poorly understood.

The 2010 story in Time wasn’t even the first version. The basic suggestion hit the mass media in 2009 in the National Post, and the Landau-Kleffner suggestion dates to a 2008 letter to the editor in Neurology Today. In addition, McCarthy does not run Generation Rescue, J.B. Handley does. (One might note that she is not appearing at the “Autism One” conference this year, although proponents of repeated bleach enemas to “treat” children with sensory disorders, as usual, are.) The propaganda arm of GR is the virulently antivaccine blog “Age of Autism.”

As it happens, McCarthy’s grandmother spoke to Ken Reibel at Autism News Beat recently, with the post datelined the 12th. Aside from this last item, it seems as though this entry suffers from a lack of basic research.

Candace McDonald is the Executive Director of Generation Rescue, not J.B. Handley (whoever that is). Jenny McCarthy is President.

These doubts have circulated for years, there is no doubt. For the sake of brevity, I focused on the controversy currently playing out in the media. I mention in the piece that these doubts have circulated for years.

If you could, please provide the citations or links for the materials you mention (letter to Neurology Today, National Post article, piece in Autism News Beat). We try to link to everything we cite.

Here is the link to the January 12th piece in Autism News Beat, published after this post went live: Apparently, McCarthy has skeptics closer to home, and for good reason. Thanks for adding this.

Please pardon me if this is a duplicate (and delete one or the other if so), as the first attempt stalled out without an ack. Verbatim:

I can only assume that the problem with the original post was use of “a href” tags. As SK looks to be on WordPress, it might be helpful to enable the description of allowed tags.

The Neurology Today letter is doi:10.1097/01.NT.0000335577.64245.34

The National Post article is most readily to hand by means of the Wayback Machine:

I will return to the question of Handley later; it was simplest to provide these first.

I believe it is the responsibility of the reader to determine what is correct and what is false information. The only way to completely be informed is through research. I personally would not support the celebrity simply because she believes that vaccines cause autism or because is a public image. Massive amount of research should be done with any thoughts or theories that we are exposed to. With that being said, I see nothing wrong with this celebrity holding on to her idea; each person has a mind of his or her own and has the right to believe what is best for his or herself.

Comments are closed.