Collaring Anti-Vaxxers

In a rather rare event, a letter was sent from the AAP's NY Immunize Group to Representative Carolyn Maloney of the US Congress concerning the Kirby/Blaxill 'briefing' at Rep. Maloney's meeting. It is not a sweet missive, no indeedy. The rarity is the inclusion of terms such as 'junk science', misinformation and irrational among others. It's a wonderful letter, well naturally I would think so, being a polemicist and all. However, it really is about time the actual meaning of the anti-vax agenda was stated clearly, in effect not allowing someone like Maloney to retreat behind the irrational as a means of being representative.

The letter to be found here also has a recommendation to read Paul Offit's Autism's False Prophets. I would hazard a guess that when AoA get round to the rebuttal, Offit will feature prominently. The other effect of the straight shootimg nature of this letter is that the folks at AoA are dealing with very definite accusation and that's harder to answer than if the missive had been politeness as usual, so conspiracy theorising of collusion between Offit and the AAP seems to be quite likely.

The text of the letter:

"Congrezsperson Carolyn Maloney
1651 3 Avenue, Suite 31 1
New York, NY 101 28-3679
Dear Congressperson Maloney,
We are concerned about misinformation you may have heard at a
recent briefing presenting the non-scientific, irrational proposals
espoused by David Kirby, and the Age of Autism with regard to a
supposed link between autism and vaccines. Vaccines save lives.
Study after study has shown absolutely no link between vaccines
and autism.
As pediatricians, teachers, nurses, cl-~ildc are providers and parents
across New York State and in your District, we are very aware of
the struggles that the families of children with autism face and the
challenges that test the children themselves. In your position as a
political leader, it is important that you have the information you
need to support 'the science, the research and the continued work
toward identifyirlg the causes, triggers and evidence based
treatment for children with autism and autism spectrum disorders.
All of the research, including the most recent and exhaustive study
done by the Columbia University School of Public Health, has
proven no link between vaccines and autism. And yet a few
people, some of whom are making a great deal of money from the
suffering and false hope of frightened parents, continue to beat the
drum for this discredited position. Many others offer dangerous and
unscientific approaches to "cures."
We urge you to stand with us against the forces working to bring
irrational fears and "junk science" into the world of children's health.
As you know, imm~~nizationasre one of our greatest public health
victories along with clean water.
Childhood diseases that can kill and maim our children are just a plane ride
away, and yet the anti-immunization groups continue to push for less and less
protection for our children. Just this year the Centers for Disease Control
reported the largest outbreak of measles in decades. New York was one of the
states that experienced a significant outbreak of serious disease. You might also
be interested in knowing that the measles that was imported into the US came,
not from the third world, but from Europe and from Israel: Developed areas that
are experiencing significant outbreaks of disease due to weak public health
policy.
We highly recommend that you read Dr. Paul Offit's recent, very well reviewed
book, Autism's False Prophets. We have included a review from The Wall Street
Journal and an editorial from the New York Times.
We will be contacting your local District Office to schedule a time to come in and
talk with you about this very important issue. We know you want to work with us
to help protect the children of New York and the children across the country.
Sincerely,
Elie Ward, MSW
Co-Chair, NYS Immunization Coalition
Enclosures ("


Update: Kirby wrote to the AAP. This line seemed irresistable to me:

"I also respectfully ask that the AAP please provide me with specific instances of “nonscientific” or “irrational proposals” that I put forth at the briefing, so that I may respond accordingly."


So I sent them a helpful link. 10:1 it doesn't make it though the censorship, though I was quite respectful.

Defaming Autistics in the Name of Autistic Advocacy

Please note that Michelle Dawson disagrees with this post. Her comment is as follows:

"I've posted my opposition to what Alyric has done here and here."


I disagree and for only one reason. I'm quite sure that when Michelle started working with Mottron and writing advocacy on behalf of innumerable folks everywhere, she had no idea where it would all end up and her own prominence in it. But, she is that prominent and there it is. The cost to prominence is to be a front runner. Therefore the argument that this is going to make her life difficult has less legitimacy than it might. Actually, I tend to think that it makes life more difficult in the long run to avoid this kind of confrontation and this confrontation has been brewing for a very long time, to the point that autism advocacy here in Canada has been poisoned by it. Now that's my opinion and goody for me, what a nice safe opinion it is too. Am I going to be affected by this action? Nope and because of that dear reader, you must take what Michelle thinks into account first before you do anything at all.

The main drag:

I wrote this letter (not a very good one) because I've had enough of the advocacy of some so intent on their narrow pursuits that they think that those who contribute in ways not supportive of their agenda can be defamed at will. That the autistic involved is important and that this importance is being recognised in the broader autistic research community is not actually central to the matter. What matters is that whole slabs of raw data, namely the perceptions and cognitive characteristics of autistics, cognitive psychological studies all, are being dismissed as 'anti-ABA'. Why? Because I suspect that this is a major point of unavoidable embarassment for behaviourists who can claim in 40 years of research nothing at all that furthers understanding of autistics, yet they have vast intervention mechanisms in place. Naturally, if you're FEATBC and are running a major political campaign to have Medicare fund ABA, anything seen to detract in any way has to be marginalised and if at all possible de-legitimised. Well that has to stop. I know their agenda and know more thAn enough about how governments fund autism services to be in sympathy with their aims, while not necessarily thinking that this is wonderful for all autistics and all skill sets. It emphatically is not and there's no evidence to say so. Just look at Medicare funding for autism services in Australia - and that's PT, OT and speech therapy, no where near ABA. They're talking to the the tune of 20 services per annum, what a joke.

It is however, no joke when autistics are defamed in the name of attempting to sideline enormously important research because it doesn't fit with your plans. How can anyone claim to represent autistics or have their interests at heart while doing so is simply not possible that I can see. As such, I'm calling on anyone who cares to write to FEATBC and any politicians you care to protesting their extraordinary activities, highlighting the importance of this research and emphasisng that reasonable people, including legitimate advocates just do not do such things. I write from the outsider perspective, not being Canadian and I think that it would be helpful if folks outside of Canada could let Canadians and their politicians become aware of the disgust in which these advocacy efforts are viewed. The Medicare for Autism website lists politicians supportive of this initiative and they are the ones who will be most aware of the very negative publicity that FEATBC's activities are likely to generate since politicians always look at the wider picture.

7 November 2008

Dr Sabrina Freeman
Executive Director
c/- Ms Jean Lewis
Board Member
Families for Early Autism Intervention of British Columbia (F.E.A.T.B.C.)
Suite 425 - 1489 Marine Drive,
West Vancouver, BC, V7T 1B8

Dear Dr Freeman and Ms Lewis

I am writing concerning the posting in duplicate of the following to the FEATBC message boards on, Wednesday, October 29, 2008 at here and here.

The text is as follows:
“The National, CBC's flagship nightly newscast hosted by Peter Mansbridge, has proven itself completely worthless to anyone who has any respect for truth.
Here is the piece of garbage they have recently produced:

http://www.cbc.ca/national/blog/special_feature/positively_autistic/

It is important to note that Michelle Dawson is a self-proclaimed "autistic" who has never had a formal diagnosis. A newspaper report has revealed that she has supposedly "self-diagnosed" herself. Much evidence suggests she is an opportunist who is seeking profit and attention by exploiting public ignorance about autism.
Temple Grandin, a real autistic who is NOT against ABA, says:

"The problem is, you talk to parents with a low-functioning kid, who've got a teenager who still goes to the bathroom in his pants and who's biting himself all the time. This guy destroys the house, and he's not typing, no matter what keyboards you make available. His life is miserable."

Why do people like Michelle Dawson never talk about how miserable these children get without treatment? That's because they want the fame and fortune of Temple Grandin but have nothing to contribute, so they resort to any method imaginable, often at the expense of truly disabled children.

Tony”

Everybody has an opinion but, the problem is that this posting will place the Medicare for Autism Now campaign in jeopardy if it ever becomes apparent in government circles that a prominent autism advocacy society, which claims to be doing their all for their constituency - autistics, one would assume, blatantly treats one of them to a disgraceful display of overt defamation and disrespect. No one it seems has considered the effect of such antics on an outsider. I am an outsider, though reasonably knowledgeable of the history of the altercation, having followed it from my own country before I arrived in yours. Your government decision makers are also outsiders. What is immediately obvious is that a prominent Canadian researcher in autism, Michelle Dawson, who has done as much as anyone to drag psychological research into autism into the cognitive revolution and who selflessly represented herself and therefore all autistics before the Canadian Human Rights Tribunal (CHRT), is being grossly misrepresented. Those who seek prominence and profit do not elect to work as unpaid volunteer researchers (for
the many years that the CHRT case was in progress) and neither do they seek no damages following the successful outcome of their CHRT case. It is also obvious that Ms Dawson’s diagnosis will have been scrutinised most thoroughly by CHRT. The numerous non sequiturs in this posting would not under any circumstances be put to any other Canadian researcher. Imagine if Dr Eric Fombonne were to be asked to “talk about how miserable these people would be without treatment”. The attitudes expressed represent ignorance combined with base ingratitude. I am not a Canadian but I know where to find the text of Ms Dawson’s CHRT outcome. These lines are particularly memorable:

“the Tribunal finds it disturbing for the future of autistic people that they be seen because of their condition to pose a threat to the safety of others and some form of nuisance in the workplace. An employer has a duty to ensure not only that all employees work in a safe environment but also that ill perceptions about an employee's condition due to poor or inadequate information about his disability lead other employees to have negative and ill-founded perceptions about him.”


I plan to use those lines in the event of discrimination in the workplace against my ASD offspring. But those lines, bearing the imprimatur of the Canadian Human Rights Tribunal, would not exist without the perseverance and hard work of Michelle Dawson. They can be a resource for anyone, including non-Canadians.

I find it extraordinary that an autism advocacy organisation should allow such contempt for what are admirable achievements by anybody using any yardstick. There are not many Canadian researchers who are listed as principal author for papers published in the prestigious journal Psychological Science, which is where one can find Dawson et al, The Level and Nature of Autistic Intelligence. There are not many who contribute to book chapters for sentinel reference texts. Ms Dawson has done that also with her contribution of Learning in Autism to J. H. Byrne (Series Ed.) & H. Roediger (Vol. Ed.), Learning and memory: A comprehensive reference: Cognitive Psychology. What country wouldn’t be proud of such a daughter? What autistic advocacy organisation wouldn’t be proud of such an autistic daughter?

The sentiments expressed by the poster and disseminated by supporters of FEATBC do nothing for the reputations of those involved and may do a great deal more harm than foreshadowed given the importance the participants put on persuading governments to do more for autistic children. That these proponents have disseminated such blatant falsehoods about a prominent and autistic Canadian does nothing to persuade others that their concerns are justified and worthy of serious debate.

I look to the governance of FEATBC and Medicare for Autism Now to rectify this situation.

Yours sincerely

David Kirby, PR Flack and PoMo Enthusiast

Note: PoMo or Post Modernism hangs on the belief that all truth is relative, which may make some sense in the literary criticism field but reaches comic status when applied to Science, (see Gross and Levitt’s ‘Higher Superstitions’).

David Kirby and fellow conspiracy theorist, Mark Blaxill gave a briefing on vaccines and autism to Congress. True to form, Kirby’s briefing reflects an absolute commitment to projecting an image and as for the facts, well let’s not get too worried about those. Many bloggers and writers have noted Kirby’s departure from accepted standards of journalism, even though he apparently is keen on the status if not the responsibility. He remains a PR flack it seems, which is his background, judging by the contents of his presentation. I thought it would be worthwhile to see how many distortions, misrepresentations and fabrications of the facts about vaccines Kirby could deliver in under an hour, to support the earnest if not terrible sincere image of “I want to save the vaccine program, not destroy it. ” Et tu Brutus?

The following points are presented in chronological order noting that some points represent well known canards of the anti-vaccination movement. Where possible, I have linked to the necessary corrective.

■ This is a national emergency. We now have hundreds of thousands of children with autism in this country, and the majority of people in this country are under 18 years of age.

Canard # 1: The autism epidemic. There must be one so that autism can be a medical problem rather than a behavioral one. This has been debunked so many times. Orac does a pretty good corrective with the help of Dr Paul Shattuck. Not surprisingly, Dr Shattuck was promptly labelled a Pharm Shill - but they got the wrong Merck. Drat - they’re all over the place! http://scienceblogs.com/insolence/2006/04/well_that_didnt_take_long_the.php#more

■ It is estimated that the cost of care, education and housing for a person with autism runs up to 2 to 3 million dollars per person, and we have at least 250,000 people with autism in this country, so we are already up to the 700 billion, 750 billion dollar mark, coming at us in the future.

This is not so much a canard as a distortion of the autism spectrum and the omission of reference to the actual costs of caring for any person over an average lifespan. Figures like this are based on a 100% institutionalisation rate, which is ridiculous, but it probably sells well in the middle of a financial crisis and do note the many references to the financial crisis in this briefing.

■ But the vaccine program is in deep trouble. There is tremendous distrust among parents today and they don’t feel like they are being leveled with.

There are some who’ve been bamboozled by the green our vaccines publicity misinformation campaign, but don’t you think it’s just a tad dishonest to accuse the vast majority of parents - like about 90 - 95% who give all the vaccines, of being as gullible as the tiny minority? The autistic community has had enough of this tactic as well. As for greening the vaccines, there’s a lovely line from science blogger Dr Mark Crislip:

“Green our vaccines? The only green you will see by getting rid of vaccines or decreasing their use is the grass growing on the graves of children needlessly killed by preventable infections.”
http://www.sciencebasedmedicine.org/?p=186

■ And I think where we are heading in terms of science and medicine, is identifying those children who have certain genetic susceptibilities so that they cannot necessarily handle the rather crowded vaccine schedule we have today. Probably 99% of the children can handle it just fine. But what about those 1% who have a certain genetic susceptibility to vaccine ingredients and other environmental toxins?

Canard # 2 There is a subgroup of children who are ‘susceptible’ to well, anything - the vaccines, the number of vaccines, the ‘toxins’ in the vaccines or the preservative. The fact that all of these are quite different aetiologies and there is no evidence for any of it doesn’t seem to bother anyone. And this is a ‘briefing’.

Canard #3 Epidemiological studies are not sensitive enough to pick up vulnerable subgroups. The implication above is that the subgroup is too small to be picked up by epidemiological studies but not too small to jeopardise the Autism Omnibus Proceedings. That is a nonsense. Epidemiological studies have picked up correlations as rare as 1:38000 and 1;100000. Given the huge sample sizes, the statistical power of the studies finding no link between vaccines and autism was plenty to find very small subgroups if they existed, a point described very well in Dr Paul Offit’s “Autism’s False Prophets”.

Canard #4 The vaccine schedule is too crowded. You know you aren’t dealing with rational people when they make this claim or talk about ‘toxin’ in vaccines, because the quantity of what they’re talking about in the vaccine is absolutely dwarfed by factors of tens to hundreds to millions of the substance already present in the infant to be vaccinated. Take the antigen load in vaccines. The entire infant schedule has been measured in the low hundreds. The infant is bombarded with millions of antigens all day every day, but somehow the vaccine schedule with its paltry load is too much? They talk about aluminium in vaccines, either not knowing or choosing to forget that the levels of aluminium are a hundred times that already in the infant and too small to be a noticeable addition. The reason for that is simple enough. Aluminium is one of the commonest elements on earth. Ditto for formaldehyde. The trace level left over from manufacture is overshadowed thousand fold by what the infant already has. Heck we make the stuff as a byproduct of some metabolic processes. Dr Mark Crislip, bless him, nails the 'too many too soon' here: http://www.sciencebasedmedicine.org/?p=289


■ We need to look for genetic susceptibilities. Are people born with certain vulnerabilities? Maybe immune problems, autoimmune problems, or mitochondrial dysfunction. What about metal metabolism? Some people are able to excrete and metabolize heavy metals much better than others. So, is there a certain small subset of the population that is particularly at risk for vaccine injury that might lead to autism and other problems?
It seems that anti-vaxxers have adopted a pattern of assuming that untested hypotheses are central to their case such as here with vaccines and ‘susceptible’ groups. This was also one of Healy’s motherhood statements. According to a very recent survey of the experts who manage such susceptible groups, the experts are practically unanimous in endorsing the vaccination schedule, as is for the most part, and see no reasons for delaying it. That much Healy at least should have been aware of. See Barshop and Summar: Attitudes regarding vaccination among practitioners of clinical biochemical genetics. http://www.ncbi.nlm.nih.gov/pubmed/18816884 The conclusion to this paper is worth noting:

“In summary, it is clear that the general opinion held by practitioners in the field of Clinical Biochemical Genetics favors the full schedule of vaccination for their patients. The overwhelming majority also feel that the benefits of the current schedule outweigh the risks to individuals with undiagnosed metabolic disease. Most have never observed any significant adverse event which was attributed to a vaccine reaction. Some respondents have seen the association once or seldom in their careers, but none felt it to be frequent. The fact that there were few encountered events of long-term deterioration due to a disease for which vaccination is available probably simply reflects the low incidence of those diseases, due to the effectiveness of vaccination practices. A panoply of questions remain, however, and there is a great need for more data.”


■ Then there is the Maloney Bill, and I really hope you’ll take a look at it and consider cosponsoring it. That would fund a study of vaccinated vs. unvaccinated populations of children. Dr. Julie Gerberding has said that this study can and should be done, and I would just say that if this study was done and done properly, and there was absolutely no difference in outcomes between vaccinated children and unvaccinated children, it would shut me up.

Now there Kirby is indulging in one or two fibs. While the likes of Healy could say that such a study ‘can and should be done’, I can’t see Geberding saying any such thing or at least meaning what Kirby is disingenuously suggesting here given his and other anti-vaxxers legendary propensities to fabricate statements by Geberding. Kirby is quite outrageous in
misquoting Geberding particularly in relation to Geberding’s remarks about the limitations of the CDC’s Vaccine Safety Datalink (VSD) data. See Epiwonk’s careful deconstruction of Kirby’s shenanigans here: http://epiwonk.com/?p=79.

The legion of problems a comparative study between vaccinated and unvaccinated populations has been comprehensively discussed here, http://photoninthedarkness.com/?p=154, including the ethics. The author also flatly disagrees that such a study would be either necessary or effective. What, after all would such a study be looking at with respect to vaccines. Kirby is careful not to specify.

Secondarily, it is doubtful on past record that Kirby would be satisfied with the results of such a study. When the CDDS Calidornia showed that autism rates were not dropping he shifted the goal posts, though he had sais he would abandon the hypothesis that autism was caused by TCVs. Comparisons of autism in those who got thimerosal and those that didn’t, those that got MMR and those that didn’t and with those on different vaccine schedules haven’t satisfied him or any other ant-vaxxer. For Kirby it’s just another ploy to keep the money flowing and for the rest - it’s always been about how wrong vaccines are, how unnatural. No answer will satisfy them.

■ We’re seeing extremely high levels in autism among children of immigrants, children born in the United States. For example, the Somalis in Minnesota, and I’ll be looking at this more in the near future. Their rate of autism is going through the roof. And there is virtually no autism, or very little autism reported in Somalia.

Perhaps Kirby is the sole public relations flack that doesn’t know that Somalia has no government. Who, in that miserable land would be keeping track of autism rates? Maybe that explains his singular lack of success in journalism.

■ And yes, there is a big debate, still, about whether autism is truly a genetic disorder, or is there an environmental component? People who argue that autism is genetic say that it’s always been with us at this rate. Now, you cannot have a genetic epidemic, so the way to explain the increasing numbers, they say, is through better diagnosis and better reporting.


Canard #5 The environmental component must be some exotic chemical in the environment. Some have cynically suggested that introduced chemicals have the singular advantage that someone may be sued about their introduction. Nevertheless, Kirby does not seem to have considered that among identical twins where rates are discordant, the environmental chemical exposures would be very similar, identical even in utero. “Environment’ covers a lot of ground, including epigenetic factors.

There follows a laundry list of metabolic states the autism as disease model likes to trot out, namely neuroinflammation, low glutathione levels and oxidative stress. Kirby does not mention androgen pathways, which is infamous Geier castration therapy territory and therefore far too much the hot potato for a Congressional briefing. However, the theories of metabolic idiosyncracies supposedly associated with autism were laid before the Special Masters hearing the Autism Omnibus Proceedings and there were demolished soundly by some of the finest specialists around. The transcripts are available from: http://www.uscfc.uscourts.gov/omnibus-autism-proceeding.

■ He [Burbacher] gave half the monkeys injected ethylmercury, replicating the vaccine schedule; and he gave the other half ingested methylmercury in the form found in fish. And what he found was, even though the ethylmercury cleared from the blood more readily and did not cross to the brain quite as much, the ethylmercury that did get into the brain immediately started converting to inorganic mercury.

Rather surprisingly he admits to ethylmercury clearing the body much faster, though he does not state just how huge the different rates of clearance are, days for ethylmercury against months for methyl mercury. Nevertheless, there is no one in the antivax camp who will acknowledge that Burbacher did not attempt to differentiate the actual contributions of either added doses of ethyl or methyl mercury to brain inorganic mercury, he just ground the brains up and assumed that what they had been given was unadulterated organic mercury but he had no way of bring certain of that. See BC ‘s take on this: http://bartholomewcubbins.blogspot.com/2007/01/bc-on-autism-revisiting-burbacher-2005.html

■ “Hannah’s autism was caused by a vaccine-induced trigger of her underlying mitochondrial dysfunction.”

This line from Kirby is pure fabrication. The government conceded no such thing. Stephen Novella has the definitive rebuttal of this: http://www.theness.com/neurologicablog/index.php?p=203

Canard #6 Mitochondrial disorders are a significant factor in a significant number of cases of autism aetiology and the method is disruption of mitochondrial DNA through exposure to toxic chemicals. This position has been adopted so quickly in certain quarters that it is relatively common to hear that “I’m going to check my kid for ‘mito’”, regardless of the difficulty of doing so, legitimately that is, or the enormous differences in clinical presentation between autism and a mitochondrial disorder severe enough to lead to encephalopathy. Prometheus has a comprehensive overview of the subject at: http://photoninthedarkness.com/?p=149,


■ Kirby quoting Dr Bernadine Healy: “Officials have been too quick to dismiss the hypothesis as 'irrational,' without sufficient studies of causation, without studying the population that got sick.” “You can’t rely solely on epidemiology to solve a physiological mystery; we have to look at the kids. And then she said, and I think we should all take this to heart, “Never turn your back on any scientific hypothesis because you are afraid of what it might show.”

Canard #7 The powers that be, that is, CDC, FDA, AAP, WHO and the IOM are afraid to look at vaccines and autism for fear of what they might find. This is a peculiar statement by Healy, not corroborated by a single supporting syllable, and is quite possibly the most foolhardy motherhood statement this lady has yet made in a long career of making similarly stupid statements about a variety of topics. Fortunately, upon enquiry, the IOM were quite willing to offer the salutary corrective to Healy’s nonsense. See: http://autism-myths.org/2008/11/the-iom-are-afraid-to-look-at-susceptibility-groups/

There are undoubtedly many more myths, distortions of facts, fabrications I’ve missed in Kirby’s one hour long presentation to the US Congress. He did not apparently come away unscathed. One senator’s aide managed to pull him up on at least one occasion. However, as one can see, it takes quite a bit to dispel the whole of it and Kirby no doubt relies on not many having sufficient information to be able to assess the magnitude of his mythology. Is this man a dastardly cur, with no respect for data and no moral compass? Perhaps, but I think it far more likely that he’s simply entirely self-serving and with a marked tendency to regard truth as entirely relative. In other words, he’s his own PR flack and a bona fide Po Mo enthusiast.