What's the harm? No. 8

September 26, 2007. Ignorance combined with benevolent intentions by celebrities with access to mass media outlets can cause untold harm to countless numbers of people. For all the good that Oprah Winfrey has done with her money and influence, she has done an awful lot of harm by treating celebrities as if they were scientists and treating victims as if they were experts. Giving authority to uninformed celebrities posing as victims and passing off their magical thinking as truth may be Oprah's worst sin. Oprah's viewers trust her and that trust translates into faith in what her guests say, especially when Oprah validates them as she did Jenny McCarthy (Playboy Miss October 1993 and MTV star) and Holly Robinson Peete (actress and wife of former NFL player Rodney Peete). For their defiance of medical science and for their faith in "the mommy instinct" regarding autism, Oprah called these celebs "mother warriors." She might just as well have called them mother killers. McCarthy's "mommy instinct" tells her that the MMR vaccine caused her son's autism. And even though she didn't advise mothers to not vaccinate their children, some viewers will undoubtedly take away that message, especially if they follow their "mommy instinct" instead of sound medical advice.

On July 18, 2006, I noted that children are dying of measles again because mothers were not having their children vaccinated for fear of causing autism in their children. Children who aren't being vaccinated endanger other children they come in contact with, especially those with weakened immune systems. Throughout Europe, many parents stopped bringing in their children for the MMR vaccination. Cases of measles in England are at a 20-year high following the collapse in MMR immunization rates.* The panic is due to at least two things: Andrew Wakefield and widespread belief that governments are conspiring with pharmaceutical firms to hide the truth about vaccines. I wrote about Wakefield in 2002. You can read about Dr. Wakefield and other mothers with strong "mommy instincts" about autism and vaccines here.

Despite the fact that there is no compelling scientific evidence that the MMR vaccine or the ethylmercury (not methylmercury) that used to be used as a preservative in other vaccines has caused any case of autism anywhere in the world, many people still buy into the myth that, as McCarthy put it, the MMR vaccination is "the autism shot." The evidence is very strong that there is no causal connection at all between the MMR vaccine and autism. When your "mommy instinct" conflicts with overwhelming scientific evidence contrary to your instinct, if you are a rational person you will begin to mistrust your mommy instinct and admit that you are probably wrong. However, we all know that emotionally based beliefs are hard nuts to crack and convincing a person that evaluating one's own experience is sometimes a treacherous enterprise will often fall on deaf ears.

I didn't see the Oprah show with McCarthy and Peete, but I read the transcript of the show called "Mothers Battle Autism." I heard about the Oprah program from Dr. Steven Novella while listening to the Skeptic's Guide to the Universe podcast #113. Dr. Novella mentioned that some of the harm that will be done to children because their mothers won't have them vaccinated will show up later in life when the children grow up to be blind. In 1941, an Australian ophthalmologist found that many children are born with congenital cataracts and that blindness followed an outbreak of rubella. This was the first evidence that rubella could permanently damage the developing fetus.* We now know that not only blindness but deafness, heart defects, and retardation can result in children born to mothers infected with rubella.*

So, thank you Oprah, for hosting and supporting these "mother warriors." Thanks to you we'll have fewer mouths to feed in the future and some of those who survive won't be able to see what a mess we've made of things or hear people complain about it. And thank you for encouraging your millions of viewers to have more faith in the opinions of a former Playmate of the month and an actress than in the evidence produced by years of research by highly educated scientists. Thank you for encouraging mistrust of pediatricians and for reminding us that parents know better since they're, well, parents! Your "ask the experts" (Jenny and Holly) is a gift to us all. Finally, thank you for not subjecting us to the opinions of scientists and the opinions of parents like Dr. Michael Fitzpatrick. Mommy intuitions trump science any day. Still, I would have been more impressed had Jenny and Holly worn white lab coats and held clipboards. Anyway, I look forward to your program on magical thinking where you expose the fatal flaws in scientific methods and awaken the world to the superiority of personal experience, instinct, and intuition.

Other places I've posted on autism and MMR:

• mass media funk 35

• mass media funk 39

• mass media funk 40

• mass media bunk 24

• What's the harm? 3

follow-up

The day after the above was posted, Los Angeles Times reporter Denise Gellene published an article on a seven-year study of 1,047 children who received mercury-containing vaccines as infants. This study, funded by the Center for Disease Control and Prevention, focused on looking for effects such as learning difficulties and developmental delays, and did not assess autism-spectrum disorders. The researchers studied forty-two neuropsychological outcomes. The authors of the study write:

Our study does not support a causal association between early exposure to mercury from thimerosal-containing vaccines and immune globulins and deficits in neuropsychological functioning at the age of 7 to 10 years.

The study was published today (September 27, 2007) in The New England Journal of Medicine.

In a classic example of pseudosymmetry, Gellene writes: "some scientists and advocacy groups have argued" that mercury causes autism, "the issue is contentious," and "several thousand parents are seeking legal compensation on behalf of children who developed autism after receiving vaccinations." (The human body metabolizes thimerosal, used as a preservative in the many vaccines until several years ago, as ethylmercury.) Gellene doesn't mention, of course, that these scientists (like Andrew Wakefield) and advocacy groups (whose beliefs are based mostly on the mommy instinct) have no credibility within the larger scientific community, which does not consider the issue contentious at all. The larger scientific community considers the issue an annoyance that hinders doing research in other areas that might lead to some fruitful discoveries that could improve treatments for autism. As evidence of the harm these contrarians are causing, the CDC, which spent $5.3 million on this study, is sponsoring two large epidemiological studies exploring the possible link between thimerosal and autism, despite the fact that there have already been several large studies that have found no link between the two. This money is being wasted. For one thing, because of all the fear generated by Wakefield and the parents' advocacy groups that have taken their case directly to the media and to the courtroom, MMR vaccines never had mercury in them.* For another thing, the evidence is already overwhelmingly supportive of the position that there is no causal link between thimerosal and autism. These new studies are not replications so much as redundancies.

Another example of pseudosymmetry in Gellene's article concerns the space she gave to the comments of Sallie Bernard, the executive director of SafeMinds, an advocacy group dedicated, in part, to proving that mercury causes autism. Bernard was one of dozens of people who were consulted by the CDC or the authors of the study. In fact, of all those consulted and listed in the study by the authors, she is the only one who is listed as a "dissenting member." In the article I read in the Sacramento Bee, Bernard was given two full paragraphs, nearly an eighth of the entire article, to say that the study was flawed and that her view that mercury in vaccines causes all kinds of childhood disorders is equally plausible with the view that the differences found, some positive and some negative, were due to chance not thimerosal.

The flaw Bernard noted is mentioned by the authors of the study:

A majority of the selected families declined to participate or could not be located, and we were able to enroll only 30% of the subjects included for recruitment. Therefore, our findings may have been influenced by selection bias.

However, rather than bias the study against Bernard's favored belief, lead author William W. Thompson thinks it would bias the study in the other direction. "Any biases would favor an association between thimerosal and harm because parents who believed their children were hurt by vaccines would be more likely to enroll them." I don't know about that. If parents are willing to believe that their pediatricians are knowingly harming their children with vaccines, they might think that the study was a sham. I hope that the 70% who did not enroll in the study weren't afraid to do so because of what harm they wondered scientists, doctors, and drug companies might do to their children.

reader comments

September 27, 2007. My letter is prompted by your response to Oprah's utterly irresponsible and idiotic "Mothers Battle Autism" show. Your response to the MMR-causes-autism theme of the show was succinct and intelligent, as usual. However, after reading the transcript of the show (excessive teeth-grinding required), I thought it relevant to bring up another theme found in most discussions of autism: the relentless portrayal of autism from the perspective of the inconvenience, embarrassment, and anguish of the parents of autistic children, and the unspoken assumption that autistics are empty shells to be cracked open and filled, rather than actual people with functional but different minds.

One aspect of the often hysterical anti-autism movement is the glaring absence of any input from the autistic community. Autism is often portrayed by parents and "advocates" as a fate worse than death, a disease that must be stamped out at all costs. Autism can certainly be a major impairment to social functioning and independent living, but some of the arguments made for curing it sound more like attempts at quality control on the kinds of minds that should be allowed to exist. The attitude of these well-meaning, but perhaps not very empathetic, people is evident in the My Name is Autism essay. The message that this sends to the autistic community is:

 "You are defective."
"You are not human."
"You have no place in our society."
"You people only exist because we haven't found a way to get rid of you yet, but we're working on it."

The effects of these attitudes go beyond making autistic people feel angry and ashamed. They contribute to the barriers faced by autistics in society by maintaining narrow and rigid popular beliefs about the "correct" and "proper" way that people should think, process sensory data, and interact with the world. These beliefs assume that a person is "suffering" from the burden of having a mind that is different from others.

When hysterical anti-autism crusading parents and quacks are engaged by skeptics and scientists, the attitudes of the anti-autism crowd towards autistics is never addressed. The continued failure of non-autistics to question these attitudes has produced anger and exasperation in the autistic community, producing retaliations such as the tongue-in-cheek Institute for the Study of the Neurologically Typical and Michelle Dawson's more serious The Misbehavior of Behaviourists. The skeptic community does an excellent job engaging the anti-autism activists when presented with the vaccination-hysteria fringe of this group, but the root cause of this hysteria, the continued sub-humanization of autistics by these "advocates," remains unaddressed.

Name withheld at author's request

Links on this topic for those who are interested:

• Our Names Are Autism, Too (a response to the My Name is Autism essay, signed by dozens of "proud autistics" and allies)
• Autism and hate speech in the Toronto Star
• Another Parent's Take on ABA and its "Defense"
• Don't mourn for us
• Autism Network International