In response to my blog post on Monday, David Kirby wrote a response in the Huffington Post and Dr. Jon Poling (father of Hannah Poling) wrote an open letter to me, placed in the comment section and posted at Age of Autism. It seems only polite that I respond to their kind attention.

The primary focus of my original post (which I further developed yesterday) was that the media is focusing too much attention on what celebrities and politicians are saying about the controversy surrounding the discredited notion that vaccines are a significant cause of autism. Over the past year Jenny McCarthy (now joined by her boyfriend Jim Carrey) has become the major spokesperson for a movement that, at its core, is anti-vaccine and is dedicated to the scientific opinion that vaccines are toxic and cause autism. Recently actress Amanda Peet joined the fray, professing her belief that vaccines are safe, are not associated with autism, and that parents who do not vaccinate their children are “parasites” for depending on other parents who do. (She later apologized for that remark, calling it “divisive”.)

While I appreciate Amanda Peet’s support, I feel strongly that scientific questions should be handled by the scientific community. Celebrities are great when they support causes – but when they second guess the scientific community and decide to advocate for their own scientific conclusions, they are more likely to cause harm than good. Continue Reading »

This week Michael Savage questioned the legitimacy of most diagnoses of autism because they are based only on symptoms – not on any objective tests. I have also been engaged in a blog discussion with Dr. Jon Poling about the exact nature of his daughter’s diagnosis – does it represent autism or something else. Both questions are ultimately about the very nature of a neurological diagnosis (or medical diagnosis in general). So I thought I would dig deeper on this question for background.

As a clinician I often discuss with patients what I think about their diagnosis. In my experience most people begin with many misconceptions about how diagnoses are typically made. I also train student doctors and they too typically come to me needing a far more complete and complex understanding of how diagnoses are made and what they mean. So even outside of the context of autism controversies this is a very useful topic to cover.

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Yesterday I wrote about the fact that Amanda Peet had come out in support of vaccine safety, adding her voice to those who wish to counter the now discredited notion that vaccines are linked to autism. While I admire her for essentially reading the situation correctly, I lamented the fact that celebrities (like Jenny McCarthy) are getting too much attention for their opinions on scientific questions. Today, while bouncing around the blogosphere, I see that McCarthy and Peet were only the tip of the iceberg.

Britney Spears

Orac reported yesterday that Jenny McCarthy held a fundraiser for her antivaccination group (mischaracterized as an autism charity) Generation Rescue. Her boyfriend, Jim Carrey, was there, of course. But also making an appearance was Britney Spears. Orac nailed it when he wrote: “Because no one knows parenting and science like Britney Spears, I guess.”

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I have bemoaned in the past the celebrity culture in which we grant more weight to the opinions of celebrities than they deserve. It seems to be part of human nature to idolize and hero-worship. It can be benign, even healthy. Young athletes idolizing the talent and hard work of sports stars may be spurred on to greater achievement themselves. I also think that intellectual heroes, like Carl Sagan and Stephen J. Gould, can have an enormously positive influence on culture and society.

TV and movie stars, however, are famous because their profession involves public performance in a medium that potentially reaches millions. This is fine as far as it goes – I have no problem admiring stars for their entertainment value, their charisma, and their artistic talent and skills. It is reasonable to admire artists for their art.

The problem comes, in my opinion, when actors and actresses feel that their political opinions or ideology are somehow more valuable than anyone else’s because of their fame. I don’t necessarily blame them – they have a right to express their opinions and their fame gives them an outlet. I do think that if they are going to trade on their fame then they have a responsibility for what they promote, but I am not questioning their right to promote whatever they choose. Rather I maintain that the public should largely not care what celebrities think about issues that have nothing to do with their art and profession.

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It’s not enough to mean well. You have to get the science right.

I believe that Jim Carrey and Jenny McCarthy mean well. They think they are saving the world from greedy corporations, corrupt government, and arrogant doctors. In their minds they are enlightened saviors, leaders of a “green” army alerting the rest of us to the dangers of toxins and the malfeasance of those in charge. Yesterday they lead a “green our vaccines” rally in Washington DC to help save the world.

But it’s not enough to mean well. Carrey and McCarthy get the science terribly, hopelessly, and tragically wrong. In fact, meaning well is part of what makes them dangerous. They display that toxic brew of arrogance and self-righteousness, combined with the power of celebrity to do real damage.

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Dr. Offit is an infectious disease and vaccine specialist who has been extremely active in defending the science of vaccine safety and effectiveness against ideological attack from antivaccinationists. He has recently published an excellent article in the New England Journal of Medicine in which he reviews the Hannah Poling case – the case of the girl with a mitochondrial disorder who developed encephalopathy following a series of vaccines. He makes many very good points and the entire article is worth reading.

I wrote previously about the Hannah Poling case. This remains a vexing case because it in no way supports the claim that there is a link between vaccines and autism, but it is a complex case and is easily presented by antivaccine activists as if it does support a link. Dr. Offit echoes my position that the details of the case, when put into proper perspective, do not support claims for such a link.

I love a good sequel. Aliens, of course, was the best sequel ever – that rare event when the sequel is actually better than the original movie (of course, the series went down hill from there, like Star Trek it peaked with the second movie).

Last year we heard the results of the Autism Omnibus – a special court with three special masters set up to resolve about 5,000 cases before the vaccine court claiming that autism resulted from vaccines – either the MMR vaccine or thimerosal (a mercury-based preservative in some vaccines, but removed from most by 2002). In the US there is a Vaccine Injury Compensation Program (VICP) which bypasses the regular courts and awards compensation to those injured by vaccines, paid for by a small tax on each dose of vaccine given. The purpose is to rapidly compensate those who might have been injured (the threshold for evidence is quite low) and to encourage pharmaceutical companies to manufacture vaccines (the threat of suit would make it not viable otherwise).

Over 2008 the Autism Omnibus heard three cases that were presented as the test cases (presumably the best cases they could come up with) for the theory that the  MMR vaccine (with or without thimerosal from other vaccines – MMR never had thimerosal) caused or contributed to autism in some individuals. They ruled against all three cases, stating in very strong terms that there is no evidence to back up the claims of a link between MMR and autism. Judge Hasting wrote of one case – Cedillo:

Considering all of the evidence, I found that the petitioners have failed to demonstrate that thimerosal-containing vaccines can contribute to causing immune dysfunction, or that the MMR vaccine can contribute to causing either autism or gastrointestinal dysfunction. I further conclude that while Michelle Cedillo has tragically suffered from autism and other severe conditions, the petitioners have also failed to demonstrate that her vaccinations played any role at all in causing those problems.

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