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Expelled!

May 26th, 2008 · 64 Comments · Critical thinking, Easy marks

The annual AutismOne conference is part trade fair, part revival meeting. This year’s event featured comedienne and Autism mom Jenny McCarthy, and dozens of autism “researchers” whose words are apparently digested salt free by the 2,000 parents who gathered at the Westin O’Hare Hotel in Chicago. Dozens of vendors filled one large meeting room and lined the carpeted hallways. Dietary supplements, gluten free snacks, hyperbaric chambers, homeopathic clinics, testing labs. One vendor’s display read “No More Guilty Parenting”, which could have doubled as the convention’s theme. Guilt is like oxygen to the alt-med autism cure culture; it hangs in the air like an invisible draft from Bruno Bettelheim’s refrigerator. You could feel the chill in every corner of the Westin O’Hare’s spacious convention facility. Guilt, and hope that the most widely accepted science on autism is wrong, that autism can be reversed, that recovery from autism happens all the time, and it can happen for you.

A panel discussion on Autism and the Media drew one of two invited Chicago Tribune reporters, Julie Deardorff; along with Peoria news anchor Jen Christensen; and Ashley Reynolds, a journalism student from KOMU-TV in Columbia, MO. Three editors from AgeOfAutism.com, a fringe anti-vaccine website hosted the discussion. Here’s a portion:

I also attended a Q&A with Jon Poling, MD, PhD, and his wife, Terry. The Polings have been on a media blitzkrieg since March when they were identified as test case petitioners in the Vaccine Omnibus hearings. The details of the case are shrouded in speculation, since the Polings have not publicly released their daughter’s relevant medical records. I asked the Polings if they plan to release those records soon. Terry Poling said she and her husband would not discuss their daughter’s case as long as there was ongoing litigation.

Soon after I asked my question, a hotel security official asked me to turn off my video camera. At the conclusion of the Q&A, 15 minutes later, I was surrounded by hotel security and escorted out of the building. I had registered six weeks earlier as media, and received a confirming email. I was handed a press pass and told to fill it out myself at the registration desk Friday morning, after being told the computer system was down and my name could not be pulled up. But the conference organizers were having none of it, although by now Westin security no doubt realizes I was totally truthful and cooperative, even turning over my driver’s license for photocopying.

But I had committed an unpardonable sin in AutismCureLand. I asked a question that could be answered. The case against vaccines is made in the shadows, in restricted venues such as AutismOne and on fringe websites and internet chatrooms. Anti-vaccine activists speak in generalities, relying on the conditional and subjunctive tense to avoid confronting what modern man has known for centuries: that we’re better off listening to best available evidence rather than dogma and fear. I was asking for evidence. Shame on me.

On my way out, an AutismOne organizer told me “This is supposed to be a positive thing, and you’re making it negative.” It was his parting shot as I was led out the door, into the parking lot, where the air was warm.

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64 responses so far ↓

  • 1 AutismNewsBeat // Jun 2, 2008 at 5:51 am

    Exactly, and I think Craig’s comment highlights a major difference between the approaches of both sides. The pro-vaccine side is practical, and adheres to scientific standards, recognizing that this is an issue of science. The anti-vaccine side pretends to science, but plays a political game, since its scientific options have long been exhausted. While it may be true that some parents are concerned over vaccine injury, the best available evidence sees no link between vaccines and autism, and that although vaccine injury does occur, it is rare, and must be weighed against the very real risks of preventable disease outbreaks.

  • 2 Craig Willoughby // Jun 2, 2008 at 10:14 am

    Albert, that is a very good question, and honestly, I don’t have an answer for you. The only thing I can tell you is that it will be extremely difficult to convince me that vaccines do not contribute to autism. There are 2 reasons.

    One: I am convinced that the Medical and Pharmacy industries have been dishonest in their portrayal of the safety of vaccines; we know they have been dishonest in the recent past.

    And even if they are being honest, then there is the evidence of my own son’s experience and the documented medical report of my son’s hospital visit on the day of his DTaP vaccination. That morning, he was walking, talking (for an 18 month old baby, he had a respectable vocabulary of around 30 words), and being a normal 1 year old toddler. After his shot, around 5 hours later, he began a really high fever, terrible high-pitched shrieks and back arching. We brought him in to the ER, where we were told that this is “normal” after a vaccine (!) We asked that he be thoroughly examined, and after several tests, including a CAT scan, they were able to determine what was wrong. The official medical report from my son’s visit says, “Encepalopathy due to vaccine induced fever.” In other words, my son developed a fever that caused his brain to swell. He hasn’t spoken since, and 6 months after his vaccination, he was diagnosed with ASD.

    Does what happened to my child happen to all Autistic children? I seriously doubt it. I began doing research right after my son’s diagnosis, and I was chilled at how many stories echoed my own. I am willing to concede, however, that some parents may have read these stories and thought, in desperation, that this could have happened to their autistic child. I know, though, that my son had an adverse reaction to a vaccine, and that it resulted in brain damage that is recognized as autism. And it offends me greatly when people either dismiss me as a kook or call me a lier (and no one here has done that during this discussion, and for that, I thank all of you).

    Ken, I agree that the debate for the Green Vacciners has gone political, but I think that this is because we are seriously afraid that something is being overlooked, that if science continues do dismiss this possibility, then more children may get this debilitating condition. Many of us are afraid that there are quite a few children who may be susceptible to adverse effects.

    I have never once denied the benefits of vaccinations, but I think that science has been dismissive of this small subset of children who have what is known as regressive autism, and that perhaps they should look at these children to see if there is a susceptibility group, and then change the vaccinations accordingly. This, I think, would assure parents that steps are being taken to protect this (possible) small subset of children. This would also, potentially, help herd immunity by allowing this small subset to vaccinate on a different schedule or with a different formula.

    Again, thank all of you for hearing me out, and I greatly appreciate the respectful tone that you have shown me in this discussion.

  • 3 Orac // Jun 2, 2008 at 11:11 am

    The pro-vaccine side is practical, and adheres to scientific standards, recognizing that this is an issue of science. The anti-vaccine side pretends to science, but is plays a political game, since its scientific options have long been exhausted

    Exactly. This is probably going to piss Craig off a bit, but it must be said: Antivaccinationists (and make no mistake about it, Generation Rescue, J.B. Handley, Jenny McCarthy, Kim Stagliano, David Kirby, Dan Olmsted, and their fellow travelers at the Age of Autism are antivaccinationists, their bogus “Green Our Vaccines” slogan notwithstanding) have become just like any other group of cranks that attack the scientific consensus based either on no data or on data from really bad (or even pseudoscientific) studies. They’ve become just like people who deny that HIV causes AIDS, people who believe that homeopathy or Hoxsey therapy can cure cancer, creationists who deny the theory of evolution, and even Holocaust deniers. (No, I’m not in any way implying that antivaccinationists are neo-Nazis or Hitler sympathizers, only that they use similar rhetorical tactics and distortions of evidence that Holocaust deniers do.)

    These cranks all share a common set of tactics in that they cherry-pick the rare study that seems to support their point of view (which upon reading often don’t), confuse correlation with causation, impute dire conspiracies to those who speak for science and medicine to “cover up” dangers that only they can see, and rely on pseudoscience and emotion rather than science to promote their agenda. (This will be on full display in Washington, D.C. in less than two days.)

    Another aspect of cranks is an inordinate deference to what they perceive as “experts.” Why else do you think that my pseudonym drove J. B. Handley and others so crazy? My arguments should stand and fall on their own regardless of who I am, which, believe it or not, was one reason (but not the only reason) I adopted the pseudonym lo those many years ago. Yet, antivaccinationists and other cranks went to great lengths to find out who I am in order to attack me.

    Indeed, it was an antivaccinationist “named” Ashleigh Anderson who first “outed” me in on the EOH list and then was parroted by another antivaccinationist named Pat Sullivan, who “outed” me to the blogsophere. (I still have a nagging suspicion that “Ashleigh” might have been in reality J.B. Handley, but have no hard evidence to support that suspicion.) Since, then, I’ve been “outed” by HIV/AIDS denialists, cancer quacks, and creationists. Truly J.B. Handley is in fine company, scientifically speaking, in his piling on to this “out”-train, and if he thinks his “punching me in the nose” will make one whit of difference he is sadly mistaken. There have been at least five or six such “punches” in the last three years, and I’m still here. On the other hand, it does reveal to all the world his Beavis and Butthead-level mentality, for which I’m grateful.

    Another aspect of this is that there are a lot of quacks making a lot of money off of “biomedical interventions” designed to “reverse vaccine injury” in autistic children. If parents susceptible to their blandishments were to be convinced that vaccine injury did not cause their child’s autism, then their profit train is seriously endangered. Ditto the quacks like Dr. Mark Geier who make a living testifying as “expert” witnesses for plaintiffs in vaccine injury cases. It never ceases to amaze me how parents who claim that big pharma profit considerations and concern about the cash flow of pediatricians are behind the defense of vaccines are blind to just how profit-driven the entire autism biomedical industry is, especially when the vast majority of vaccines are not particularly profitable (particularly given the liability considerations, which have led many pharmaceutical companies to drop out of the vaccine business) and that pediatricians make little or no money giving vaccines.

    Once again, the “debate” over vaccines is really a pseudodebate, also known as a manufactured controversy, or, colloquially, a manufactroversy. There isn’t really a scientific debate anymore. Ideologues, however, continue to stir up a political and emotional debate. Unfortunately, antivaccinationists have been very successful of late. They appear to be winning. I very much fear that we are going to experience a resurgence of morbidity and even mortality from vaccine-preventable diseases as vaccination rates fall and herd immunity wanes. If that happens, and I sincerely hope that it does not, I will not hesitate in laying it all at the feet of pseudoscientists like Dr. Geier, activists like J.B. Handley, and useful celebrity idiots like Jenny McCarthy.

  • 4 Craig Willoughby // Jun 2, 2008 at 12:17 pm

    No, Orac, it doesn’t piss me off in the least, because I completely understand the position you are coming from. You perceive the Green Vacciners as a genuine threat to the medical community. While I may not agree with you, I understand your concerns and I also understand that you are genuinely worried about public health. I appreciate that concern, and I have a great deal of respect for your views. However, I have proof of my son’s injuries, and sadly, I get no help form my insurance or the government to treat his condition. I can’t afford alternative treatments, so my son remains in limbo, unable to speak and unable to function in a normal world. One reason I am so vehement in my views is not because I want money (I was brought up with the belief that you need to earn what you get), but because my son needs help with his condition. I would be more than willing to try standard medical practices with my son if I could afford it or if the government would pay for it (FYI, Medicaid was denied for my son because I “make too much money.” My insurance company refuses to pay because it’s “a pre-existing condition”). I was once like you guys, dead set on the fact that one of the greatest medical advances in human history could not possibly be responsible for Autism. That is, until I saw it happen to my son. I cannot and will not deny the evidence of what I have seen, nor will I deny the medical documentation that states that my son received a fever from a vaccination that caused his brain to swell, resulting in autism. I understand the concept of correlation not equalling causation. However, when we have so many of these parents all saying the same thing, wouldn’t it be prudent to investigate it thoroughly instead of dismissing their claims as being hysterical parents (I ask this with another question: In our discussion here, have I seemed in any way hysterical or irrational)? I would like to ask you, respectfully, if you know the reason why the powers that be are rejecting investigation into possible susceptible groups of children? Why haven’t the cumulative effects of multiple vaccines ever been tested? Is it possible for a small subset of children to be susceptible to neurological damage associated with vaccines? And if there are a small subset of children that are susceptible, shouldn’t the government do something to help these families? If there is a subset, shouldn’t there be screening or testing so that changes to the schedule or formula can be made to protect the child?

    I am genuinely interested in hearing your opinions. Again, it has been quite pleasant talking to all of you without the vitriole and venom normally associated with this debate.

  • 5 Prometheus // Jun 2, 2008 at 2:08 pm

    Craig asserts that “You [Orac] perceive the Green Vacciners [sic] as a genuine threat to the medical community…”

    How would that be?

    Except to the extent that “green vaccines” (which currently equate to “no vaccines”, since they would apparently have to be completely free of “bacteria and viruses”) will contribute to the decline of “herd immunity” and thus increase the risk that members of the “medical community” (and their families) will catch a vaccine-preventable disease, I don’t see how this is a “threat” to the “medical community”.

    On the financial side, fewer vaccinations will lead to a rise in vaccine-preventable diseases – that’s been shown already in the US, UK and other countries. More vaccine-preventable diseases mean more visits to the doctor’s office, more hospital admissions, more specialist consultations, more diagnostic tests, and perhaps even more surgical interventions. All of that adds up to a rise in physician income.

    Administering vaccines in the office (or Emergency Department) is not a money-making proposition. In most cases, the reimbursment barely covers the cost.

    So, fewer vaccinations means fewer low-profit office visits (well child, vaccination, etc.) and more high-profit office visits, not to mention rounding on hospitalized patients (which often pays more than an office visit), more tests, more procedures, etc. The whole “medical community” profits as a result.

    About the only “downside” I see for the “medical community” is that most of them – in fact, nearly all of them – truly hate to see people ill and suffering. That’s why most of them went into the “healthcare business” in the first place. And fewer vaccinations will lead to more illness, more suffering, more death and more disability. We don’t have to guess about this, all we have to do is look at fairly recent history.

    The connection between vaccines and autism is based on extremely poor data. While it is impossible to say that vaccines don’t cause any autism, it is possible to say that the number of cases of autism that could possibly be attributed to vaccines is very small – less than the number of cases of severe brain injury that used to be caused by measles alone.

    Even the lawyers in the Autism Omnibus hearings are coming around to this line of reasoning, slowly whittling down the maximum prevalence of vaccine-caused autism. Craig reflects this shift in rhetoric in his last comment.

    So, what are we supposed to do? We already know what the vaccine-preventable illnesses can do. That’s a matter of historical record. We don’t know that vaccines can’t cause autism, but we also don’t have any good data that they do.

    On the one hand we have a well-known and well-documented risk (vaccine-preventable illnesses) and on the other hand we have a vague and poorly supported possibility that something in vaccines might be causing autism in some children.

    To me, the choice seems obvious.

    Prometheus

  • 6 Orac // Jun 2, 2008 at 3:19 pm

    Prometheus beat me to it, summing up the situation at least as well and probably better than I could have. There is no compelling evidence to suggest that vaccines are a major contributor to autism, and in fact there is no compelling evidence that they are a minor contributor to autism. Moreover, there isn’t even particularly good evidence to support that the apparent increase in autism prevalence is due to anything more than increased awareness, broadening of the diagnostic criteria in the early 1990s, and diagnostic substitution.

    Another point: Humans like personal anecdotes better than cold, impersonal science when deciding what to believe, but anecdotes are not very good evidence because humans have a number of cognitive quirks that lead them to be too quick to conclude causation from temporal correlation. At best, anecdotes can be the basis for forming a hypothesis to test with more rigorous study, but only if the anecdotes themselves are rigorously documented; that’s because of those aforementioned cognitive quirks and the fallibility of human memory that we all suffer from and that can lead even really intelligent people who are unaware of them astray.

    Finally, I have to ask: Which specific “toxins” in vaccines would have to be removed to make them sufficiently “green”? After all, children are now exposed to less thimerosal than any time since the 1980s, but autism prevalence hasn’t dropped. Despite more vaccines, children are actually exposed to many fewer antigens in vaccines than they were 20 years ago, thanks to better design of vaccines, but autism prevalence hasn’t budged. So now “toxins” become the issue, but it’s a canard. The dose makes the poison. Botox, for instance, is one of the deadliest chemicals on earth, but at low doses it can smooth wrinkles, stop excessive sweating, relieve esophogeal spasms, and a number of other potential therapeutic effects being explored. I once observed:

    I’d love to get an antivaccinationist like Jenny McCarthy who makes the claim that she is not “antivaccine” but “antitoxin” or “pro-vaccine safety” into a discussion and ask her this hypothetical question: If formaldehyde, “antifreeze,” aluminum, thimerosal, and every chemical in vaccines circulating in all those lists on antivaccination websites that so scare you were somehow absolutely removed from the standard childhood vaccines so that not a single molecule remained (just like homeopathy), would you then vaccinate your child? The only thing that would remain is buffered salt water and the necessary antigens, be they killed virus or bacterial proteins, or whatever.

    My guess is that she’d say no.

    And that’s that–because it’s the “toxin” that makes vaccines work that really scares her.

    Today, I’m more convinced than ever that I was correct in my assessment, bolstered by having lurked on the discussion boards at Mothering.com and other sites hostile to vaccines. It’s not any “toxins” in the vaccine that antivaccinationists don’t want. it’s the “toxin” that make the vaccines work, the very process of vaccination itself, that antivaccinationists don’t like.

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