False Prophets and Failed Poets
August 30, 2008 by Kristina Chew, PhD
Filed under Health
Sometimes I think this blog is in danger of becoming a vaccine blog, as vaccines are so frequently a topic here. There’s what some refer to as their right to vaccinate or not. There’ve been recent outbreaks of measles and mumps, with many cases among unvaccinated persons. There’s the fear that vaccines or something in vaccines might be connected to autism.
Indeed, it’s “fear of autism” that is the reason for the continued talk about vaccines and autism. Anti-vaccine/pro-vaccine-safety advocates say that they want to “change the schedule” and to “make vaccines safer” to ensure that future generations of children do not get autism. But, while it seems hard to mention autism these days without vaccines being brought up, the number of studies that disputes a link continues to grow. There have been ten epidemiological studies that have shown that the MMR vaccine does not cause autism, and six that have shown that thimerosal does not cause autism; while thimerosal has been removed from vacciness since 2001, the autism rate has continued to rise.
And yet the belief about a vaccine-autism link remains, and continues to focus discussions about autism onto vaccines or some other environmental factor as a potential cause. Everyone acknowledges the need for better services and education, the shortage of housing options for adults (and of trained autism teachers and speech therapists and therapists); at least one autistic child faces the opening of the school year without a school and too often physical restraints are used to “manage” autistic children’s behaviors. For worse or for better, at this point in history, vaccines have become part of the story of autism.
Next week sees the publication of a book with the title of Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure by Dr. Paul Offit, chief of Infectious Diseases and the director of the Vaccine Education Center at the Children’s Hospital of Philadelphia, and the frequent target of anti-vaccine/pro-vaccine-safety advocates’ ire; the “false prophets” of autism are, it would seem, such figures as Dr. Andrew Wakefield, the doctor at the center of the controversy over the MMR vaccine and autism, and numerous others who have proclaimed that vaccines or something in vaccines is behind the epidemic rise in autism diagnoses, and who’ve given short shrift to arguments for how better diagnosis, understanding and awareness of autism have contributed to a rise in the prevalence of autism.
Today’s Guardian talks about one of those “false prophets,” Dr. Wakefield, in an excerpt from Dr. Ben Goldacre’s book, Bad Science, which is to be published September 1st. Goldacre starts by (get ready to gasp) defending Dr. Andrew Wakefield:
The media are fingering the wrong man, and they know who should really take the blame: in MMR, journalists and editors have constructed their greatest hoax to date, and finally demonstrated that they can pose a serious risk to public health. But there are also many unexpected twists to learn from: the health journalists themselves were not at fault, the scale of the bias in the coverage was greater than anybody realised at the time, Leo Blair was a bigger player than Wakefield, and it all happened much later than you think.
Leo Blair is the youngest son of Tony Blair, former Prime Minister of the UK, and Cherie Blair. In 2001—in the midst of the whole scare set off by a certain study in The Lancet authored by Wakefield and some others about the MMR vaccine as causing autism—-questions arose as to whether Leo’s parents had had him vaccinated. But Leo’s being vaccinated or not was just the tip of the iceberg: The real issue, of great (perhaps grievous) concern in discussions abut autism is that fact that, as Goldacre notes, Leo’s parents had surrounded themselves with “health cranks”—with practitioners of alternative “medical” practices, somewhat as here in the US, parents of autistic children forego pediatricians and “traditional” medical professionals for the more kindly seeming practitioners of medicine alternative, biomedical, complementary, homeopathic, “non-Western,” and the like. Writes Goldacre about those health cranks:
There was Cherie Blair’s closest friend and aide, Carole Caplin, a new age guru and “life coach”. Cherie was reported to visit Carole’s mum, Sylvia Caplin, a spiritual guru who was viciously anti-MMR (”for a tiny child, the MMR is a ridiculous thing to do. It has definitely caused autism,” she told the Mail). They were also prominently associated with a new age healer called Jack Temple, who offered crystal dowsing, homeopathy, neolithic-circle healing in his suburban back garden, and some special breastfeeding technique which he reckoned made vaccines unnecessary.
Whatever you believe about the Blairs’ relationships, this is what the nation was thinking about when they refused to clarify whether they had given their child the MMR vaccine.
Why in the world do educated, intelligent (or so one would like to think) persons listen to such “cranks”? My students try so hard to get into medical school: Is the fate that awaits them to be told that they can’t really help treat their patients? That the science they spend hours studying in the library and (in some cases) in the bathrooms of the families’ cramped apartments (the bathroom being the only private space) is all for nought—-call in a psyschic?
Noting that “a small cottage industry of media analysis” has risen in the wake of the scare over the MMR vaccine, Goldacre notes:
People make health decisions based on what they read in the newspapers, and MMR uptake has plummeted from 92% to 73%: there can be no doubt that the appalling state of health reporting is now a serious public health issue. We have already seen a mumps epidemic in 2005, and measles cases are at their highest levels for a decade. But these are not the most chilling consequences of their hoax, because the media are now queueing up to blame one man, Wakefield, for their own crimes.
It is madness to imagine that one single man can create a 10-year scare story. It is also dangerous to imply – even in passing – that academics should be policed not to speak their minds, no matter how poorly evidenced their claims. Individuals like Wakefield must be free to have bad ideas. The media created the MMR hoax, and they maintained it diligently for 10 years. Their failure to recognise that fact demonstrates that they have learned nothing, and until they do, journalists and editors will continue to perpetrate the very same crimes, repeatedly, with increasingly grave consequences.
We know the consequences—the rise in cases of measles, in the US and in the UK—all, or at least in part, for the sake of a really good story.
Perhaps the end conclusion about the supposed link between vaccines and autism will be that it was an easy to understand and digest storyline, to explain a condition—autism—whose cause is yet unknown, and whose cause may well differ from case to case. We want to know why a child’s autistic, why suffering happens, want to have faith and keep believing through the hard times, and vaccines provide a ready and readily identifiable culprit. (A needle injecting something into a young child?) Clara Clairborne Park, authors of two memoirs about raising an autistic daughter, Jessica Park (who’s a skilled painter), has dubbed psychoanalysts—such as Bruno Bettelheim—as “failed poets“:
“Effective treatment for autism could begin only once the psychoanalytic approach was abandoned. It wasn’t possible to develop educational interventions while autism was blamed on the mythical ‘refrigerator mother’ – the unfeeling, over-intellectual career woman.
“It’s my opinion that psychoanalysis has nothing whatever to offer autistics. I mean. . . the ‘talking treatment’ for children with no language. I know one case, a boy of 12 who didn’t speak – the analyst played chess with him for a year and a half. Psychoanalysts don’t know beans about special education. They’re a bunch of failed poets. They work with symbols. And autistic people don’t understand symbols. To them, a tree is a tree.”
Today’s false prophets of autism see themselves as crusaders, Davids against Goliath, mavericks and heroic little guys taking on Big Pharma. Indeed, they have produced quite a bit of writing and many a website in support of their cause, and with plenty of rhetoric that almost qualifies them for “autism’s failed poet” status.
Almost.
It’s true. If the news media hadn’t mentioned “autism” and “MMR” or “vaccines” in the same breath in each and every story about either over the past 10 years, it is unlikely that the association would have become inextricably linked in the public mind. Those screaming, scare-mongering headlines do a world of harm. I also would blame their transition to Web news, where the headline and getting the “click” trump any intention of providing actual, factual news and the attention span of the average reader is far less than that of folks who read real newspapers, leading to what amounts to a series of quick sound bites with little substance. CNN might be the worst perpetrator–their readers apparently cannot even be bothered to read the content of a 400-word piece and must have “bullet points” provided at the top of every entry for quick digestion.
That does not by any stretch exonerate the defalcations attributable to Wakefield who, as an MD and a “researcher,” has allegedly done things he should have known were unethical.
The false prophets have no excuse. Their raison d’etre is clear, and it’s not a pretty truth, littered with venality and cynicism and self aggrandizement.
“That does not by any stretch exonerate the defalcations attributable to Wakefield who, as an MD and a “researcher,” has allegedly done things he should have known were unethical.”
Actually, he doesn’t hold any doctoral degree at all: “Dr. Andy Wakefield, MB BS FRCS FRCPath” is how he is listed on his bio-page. MB is Bachelor of Medicine, BS is Bachelor of Surgery, FRCS is Fellow of the Royal College of Surgeons, and FRCPath is Fellow of the Royal College of Pathologists; let’s not give the bugger too much credit, eh? LoL
“Dr.” is just a title held by practising medical graduates in the UK purely on the basis of tradition – a practise harking back to the days before many medical graduates actually existed in Britain, in the modern sense (medicine was not taught in Britain for a long time after the Mediaeval Universities were founded).
I refuse to think of Wakefield as a doctor: to me, he’s a pillock.
Ya know,
It has occurred to me that this MMR/autism mantra is actually an example of perseveration ; )
Nuff said.
“… with plenty of rhetoric that almost qualifies them for “autism’s failed poet” status.”
They’re not even that good!
Hmm, David Kirby as a failed poet? Not likely – too many lies that are just too bold that he can take refuge in extraordinary levels of self delusion.
Interesting statement from Mrs. Park regarding autistics not understanding symbols. Jessica’s paintings are full of them, both convientional and non-conventional. Parks’ two books are full of anecdotes revealing the complex symbolic thinking used by her daughter. For anyone to claim that autistic people lack imagination and the ability to use symbol and metaphor reveals only the inability of that person to locate the meaning in those symbols. As usual, this is blamed on the autistic person, rather than the non-autistic person admitting she just might have missed something.
And the internet—news sites and blogs—makes it possible for readers to participate, by commenting (and mudslinging, and scaremongering) in ways far beyond a short “letter to the editor” would have made possible.
To me David Kirby is the worst of the lot. He predicates nearly every statement on a “me versus them” attitude.
When he gives presentations, he tells people: “bring your best counter-arguments”, framing it like it’s a wrestling match…”I will take you down!” (I’ve never heard: when concluding a point, does Kirby grimace and flex his muscles? That’s sort of the vibe I get).
When he links to new studies, he says, “The argument is over. You’re wrong. Period”.
And so on. It always goes back to “winning”, to him projecting his ego at the world. Anyway. I’m not sure that the autism debate needed a preening alpha-male. Doesn’t seem helpful.
David Kirby, alpha-male?
A rather shocking decline in the standards of manhood, if you ask me.
It will never go away.
The statement that there is no epidemic because it came about because of better diagnostics has the same ring as saying that heart disease is on the rise because of better diagnostics. The CDC has said that there is an epidemic. Like it or not, in the public’s mind there is an epidemic.
Given that there is an epidemic, there has to be a cause, and while genetics is involved for reasons of susceptibility, it has to be one that covers the geography and the time that the epidemic occurred. The medical community has nothing that fits this. It is a vacuum that vaccines, being the closest fit in geography and time rushes in to fill. Too many parents have seen their child change after vaccination and have it dismissed as anecdotal or as “Post hoc ergo propter hoc”. The medical community dismisses what parents see, that there are too many cases of “Post hoc” to be ignored with patronizing language that amounts to leave this to the experts. The medical community experts do not understand that since the wave of autism cases hit us like Katrina hit New Orleans, their attempts to help have been more feckless than the Homeland Security efforts in the Katrina aftermath.
The statistical experiment to determine if there is a connection between autism and vaccines is to compare the autism rates among the vaccinated population and the unvaccinated population. It is a simple test. The “experts” have never done this. Rep Carolyn Maloney (NY)and Rep Tom Osborn (NE) introduced a bill to do this. Why would they do this if such a statistical test has been done?
The vaccine industry says that they have taken out thimerosal from vaccinnes since 2001. They still use thimerosal in their processes. Since mercury chemically binds itself to sulphur proteins, there is reason to question the efficacy of their mercury removal processes. Until there are independent measurements of mercury in the “mercury free” vaccines, I will question the vaccine industry’s claim of mercury free.
There has been junk science – on both sides. I don’t know if my son’s autism was caused by vaccines. But I am a parent who has watched his son lose skills after vaccination. I will not have him vaccinated again.
Call out Kirby and Wakefield as whipping boys. Scoff if you want to. But there are good reasons to choose not to vaccinate for me. I choose not to vaccinate.
A closer look behind the notion of an “epidemic of autism” may well reveal that the media and the internet have played a not small role in creating a hoax like that Goldacre describes regarding the MMR.
The “hoax” came about because measles virus was found in the intestinal flora and the spinal fluid of autistic subjects who had received the MMR vaccine. While I believe the measurements were good ones, the medical community was correct in that the measurements do not prove that MMR causes autism.
But in their viceral attacks, the medical community missed what should have been the salient point of the measurements. Measles does not cross the tight junctions of the blood brain barrier or the blood gut barrier unless they are compromised. It is an opportunity to do good for the autism community. It will never happen. It is too close to impugning vaccines.
As Goldacre point out, the media reported on there being measles virus found in the 12 children, but reports on studies disputing a link were not made as much of.
“David Kirby, alpha-male?”
It is a strange phenomenon, Kirby rhetorically posturing this way. His previous writing goes against this style…but I think the crusader role became too attractive, changed him.
He now openly associates himself with the “right-wing” media…criticizes “liberal” media for not mindlessly perpetuating his ideas. It’s more about him now than anything else. I said “alpha-male”…maybe Narcissus is a better reference.
Ed, you choose not to vaccinate and your child is autistic?
And you say “measles virus.” That’s what you catch when you catch the measles, isn’t it? So does it matter, virus or vaccine, for the people who might be susceptible in the manner you describe? The viral load from the disease itself would be enormous compared to vaccine.
My daughter was diagnosed with autism about 6-8 months after the age when children ordinarily get many of the scheduled vaccinations. This is within the historical range specified in the DSM for the manifestation and diagnosis of autism.
She has received subsequent vaccinations, as has our older daughter. In our case we have noted no further regressions, extreme plateaus, adverse reactions or negatives–either to general health or behavior. Her overall health and appetite is comparable to her peers, and although she has a different educational trajectory, she has learned quite a bit (to speak, academic, leisure and life skills) and is able to participate in many of the same activities and community functions.
The other day both she and I received boosters and new vaccinations. Because of the current atmosphere I have to admit that I am watching Eleanor for reactions more closely than in the past; ‘probably will continue to do so for a couple of weeks.
So far, much the same as the previous occasions–No negative impacts or discernible reaction at all. She has had colds that gave her more trouble.
This *testimonial* is not meant to persuade or discount; just to recount our personal experience, and state that our experience is that it is not a given that vaccination will have an adverse physical effect.
we have just fought a hard battle in Ireland for the survival of ABA schools which have successfully helped many children to move on to mainstream education. There was a minister and an administration that did not want Psyche grads and people with Masters of Comprehensive Applied Behavioural Analysis; to be getting considered equal to Teachers with Dip Ed’s.
So we took on the media, we took on our local politicians (Ireland is all about the micro) and we marched and we told our stories and we chanted “Evidence Based” “Empirical Research” “Peer Reviewed”
We won half the battle, we are a clued in bunch of media manipulators and we would not go away.
So imagine how mystifying it is to me, to hear those very self same people giving credence to Wakefield and the Vaccine witchhunt?
All I can say is that these sensible, educated and credible people sincerely believe that the MMR hurt their baby and someone has to pay.
I agree with you. If the health and education authorities would just provide timely diagnosis, counselling, support and intervention; a lot of the quack and “lourdes” cures would never get a look in as so much of the fear and superstition around the “mystery” of autism would be resolved.
The other truly mystifying thing for me is the denial of genetics. Usually by the very people who should be in a study proving just how many adults with autistic traits marry other people with similar traits and Bingo! have a child with an ASD. (Apple, tree…join the dots folks)
The very excellent Sister Wolf sent me a link to the Simon Baron Cohen test for Empathy, Systems and Autism.
http://glennrowe.net/BaronCohen/MaleFemale.asp
My husband and I did the tests and the results were no surprise to us. But one of the questions really struck home:
“Do you tend to hammer a point home, long after the other party has lost interest in listening to your arguments?”
(I paraphrase,, don’t get all autie and quote me directly)
And further more Kristina: I have a very dear friend. Very sensible, does all the ABA courses and when there is a problem with either of her sons (ADHD & ASD/ADD) she takes the bigger picture, changes the environment, Takes the data.
But the first call goes to her homeopath.
And she was not very happy with me when I started Bratty on Respiradol.
But I respect her, and what she feels.
It’s a toughie.
xx
Emily,
When my son was in 4th grade, he received the Hep-B vaccine. He lost the ability to hold a pencil. He recovered, but not through anything that the medical community had to offer. The medical community has nothing to offer the autism community so if you want anything done about such losses, there is no choice, you have to go somewhere else. I do not have proof that vaccines caused my son’s autism, but that does not matter. It may be “Post hoc ergo propter hoc” it does not matter. It will take a flu epidemic like what occurred in 1918 before I will reconsider.
Regan,
You are correct. It is not a given that a vaccine will cause an adverse reaction, even for an autistic who has had one before.
Hammie,
I agree with you that it is mystifying that there are people who do not believe that there is a genetic contribution. My father had all of the behaviors of an Aspie. My son is classically autistic. My nephew is an aspie and my niece is an aspie. All of these live in different states. With my personal experience and the studies on twins, I can’t get away from a genetic contribution.
I am equally astonished by the denial of an environmental contribution. The denial of an environmental contribution is a denial of an epidemic because an epidemic requires an environmental contribution. The pro-vaxers have nothing that fits the geography and the timing of the autism epidemic that vaccines keeps filling. Hence comes the denial of an autism epidemic by the pro-vaxers.
An “adverse effect” is (by definition) an event that follows the administration of a vaccine; there is not necessarily a causal link between the vaccine and the aforesaid event (as noted here).
No epidemic of autism—-the notion is something of an urban myth.
Thanks for the clarification, Ed. My Insti-Scientist brain thinks, “if anything, neuromuscular rxn” there, but…I don’t know anything specific, so ignore that.
Kristina…BRIGHT blog now, eh? Woo.
@Emily, OT from the post—–I was a little surprised to see the blue flashing at me when I woke up this morning and looked at it, and the lack of a title for Autism Vox at the top!
Yes, makes it kinda difficult to click back home…must back click or pulldown. I’m sure they’ll get it straightened out.
OT: Now if the powers-that-be get the sidebar straightened out and up-to-date, you’ll be in business again.
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This comment thread is a perfect example of what’s wrong with the public discourse on autism.
The ongoing caca-phony about causes and cures has effectively drowned out the most important comment in the entire thread — Bev’s, on the use of symbolism by autistic people, and on how the failure of clinicians to *comprehend* that use gets distorted, aided by the power imbalance between clinicians and subjects, into pronouncements by the former that the latter do not have the capability to engage in such use.
Following up on which, I’ve been thinking a lot lately about Jessy Parks’ use of color and patterning in her paintings.
‘Can’t argue with the rebuke, Phil Schwarz; it’s a valid point.
Rage for Order: The paintings of Jessica Park