Jenny versus Jennifer
How would you describe an actress and a mother who makes public statements about the nation’s vaccination programme?
That is a bit strong, even when applied to Jenny McCarthy. But this is the EOHarm email list passing judgement on a different actress, Jennifer Garner whose crime was to speak up in favour of vaccines, namely the flu vccination programme in the United States. Another letter described her as,
Just another Hollywood uninformed propagandist?
This without a hint of irony from members of a group that has nothing but praise for their own Hollywood uninformed propagandist, the aforementioned Jenny MCarthy! Another letter suggests that Jenny McCarthy might want to pop round to Jennifer Garner’s house for coffee and presumably put her right on the vaccine issue at the same time.
I feel she would get short shrift. Jennifer Garner will have been ably briefed by the American Lung Association. She knows that with an annual death toll of 36,000 from influenza and its complications, this is the number eight killer in the USA with 2.7% of all deaths. It used to be 4% which suggests that the vaccine is having a positive impact. EOHarm takes its inspiration from “Evidence of Harm,” a book that purports to be a balanced investigation of the alleged connection between the mercury content in childhood vaccines and the growth in the prevalence of autism, but ends up providing uncritical support for the belief that we are in the midst of an autism epidemic caused by mercury poisoning.
Original Biomedical Theory
Once upon a time biomedical explanations and interventions for autism revolved around diets, anti fungals and vitamin supplements. I have a book, “Biological treatments for autism and PDD” by William Shaw dated 1997 which even contains a recommendation for parents to vaccinate their children against Streptococcus Pneumoniae.
The closest it comes to implicating vaccines is the author’s belief that adverse reactions to vaccines may be one of the factors contributing to recurrent infections that require antibiotics. It is the antibiotics that are supposed to do the real damage, destroying the natural flora in the gut. Consequently fungal infections damage the gut and allow poorly digested peptides to enter the blood stream. If these get into the brain they attach to opioid receptors and cause the symptoms we diagnose as autism. Three years later Karen Seroussi wrote “Unraveling the Mystery of Autism and Pervasive Developmental Disorder” [Simon and Schuster 2000] which repeated Shaw’s basic hypothesis. Vaccines, typically MMR but also DPT, were again accorded a supporting role in exacerbating a pre-existing difficulty coping with infections. Mercury, heavy metal poisoning and chelation therapy did not get a mention.
There was a problem with this “Opioid Excess” theory of causation. [apart from the obvious one that even today it remains a tentative theory with little hard science to support it.] It had originally been expounded in 1979 [Panksepp J. A Neurochemical Theory of Autism] Even if the MMR was an added factor, it too had been around since the 1970s. But the dramatic increase in reported cases of autism in children suggested that something else was happening. There were perfectly good reasons not to believe in an epidemic. But for those parents already primed to blame MMR, the growth in autism led them to look for vaccine-related causes. During the 1990s the number of mandatory vaccines for children in the USA grew steadily alongside the autism figures. In some cases children could have received in excess of the stringent safety limits for mercury exposure if they had receieved all their vaccine shots. A paper pointing to supposed similarities between mercury poisoning and autism was published in a fringe journal. Information supporting the mercury hypothesis was widely disseminated amongst parents via the internet. David Kirby wrote his book, “Evidence of Harm” and the rest, as it were, is history.
Blame all Vaccines
Now that mercury has been removed from all mandatory childhood vaccines and autism shows no signs of decreasing you would think that people would move on and look for other explanantions for autism prevalence. Perhaps this article in Time Magazine or this interview with Dr Gernsbacher and Dr Neuschaffer could offer a less catastrophic interpretation of the figures.
But parents who have invested so much intellectual and emotional capital into their belief in vaccine damaged kids as a source of autism are increasingly blaming the vaccines themselves. The real vaccine/autism scare began with the MMR fiasco in the UK. That resonated in the USA where Dr Andrew Wakefield is a popular figure at Defeat Autism Now events. As I understand it, in one variation on a theme, the mercury in vaccines was supposed to weaken the immune system and the measles component of the MMR subsequently overwhelmed it. IF you believe this and IF you also buy into the conspiracy theory that the US government [in the form of the FDA and the CDC] and the big drug companies knew about this and are now engaged in a cover-up, it is a short step to believing that all vaccines are dangerous and everything that the government tells us about vaccine safety and efficacy is a lie.
For the true believers 36,000 preventable deaths from influenza [and that is in the USA alone, never mind the rest of the world] are as nothing compared to the hypothetical possibility that vaccines cause autism. Brainwashed Simpletons? No, more like sadly deluded.
New Scientist has published an interesting commentary on the Autism Omnibus proceedings that are taking place in the United States Court of Federal Claims. They are quite rightly sympathetic to the Cedillo family whose case is the first of around 4,800 that seek to establish whether or not thimerosal containing vaccines, MMR or a combination of the two can cause autism. There is no question that Michelle Cedillo is severely disabled. There is a very big question over whether or not she is the victim of vaccine damage.
New Scientist is less sympathetic to some of those advising the parents and offering expert testimony on their behalf. They have identified a number of problems.
Lawyers representing the parents are acting on the assumption that their claims are statements of fact and that they are only having to go into court because of some kind of conspiracy between the US government and the vaccine manufacturers or ’big pharma’ in the parlance of the petitioners and their supporters. New Scientist again.
Those findings have not, however, stopped some lawyers from discussing the link as if it were already fact. The firm of Williams, Love, O’Leary, Craine and Powers, based in Portland, Oregon, is representing the Cedillo family. The company website states that “thousands of children” have developed autism “as a result of their exposure” to thimerosal.
One consequence of this mindset is that they are not approaching the court as an independent arbiter of two conflicting claims. Rather, they see the court as another obstacle in their fight for justice. Autism Diva has blogged about a very perceptive discussion of the trial on National Public Radio. One of the contributers, Gardiner Harris, a reporter with the New York Times observed that:
It’s a little bizarre that way, because the lawyers for the claimants — so normally when you go into a court where a judge is making the decision …. there’s a podium right in front of the judges and the lawyers stand in front of the judges… in this case the claimants’ attorney turned the podium around and spoke to the audience instead of to the special masters who will actually make the decision and I think it tells a lot about this case.It’s not clear that it’s all about money or even about winning for the claimants. I think … they are talking to a different audience.
I think that Harris is onto something. Some of those who believe that these autistic children are vaccine damaged have convinced themselves that government, the courts and the scientific establishment are all in cahoots with the drug companies. The children are victims of an enormous conspiracy. They do not expect to win. And if their ‘experts’ are shown up for fools or charlatans, their humiliation will be seen as martyrdom and may even enhance their status amongst those parents for whom the vaccine question has become an article of faith.
It is easy to imagine how well meaning others can be so impressed by the parents’ sincerity that they are swept up by an emotional tsunami that destroys their critical faculties. It is also the case that more cynical observers are quick to step into the wreckage to exploit the suffering with snake oil remedies and dubious research.
The New Scientist cites the Geiers as a case in point. Regular readers of this blog will be familiar with the exploits of this family firm and the stirling efforts made by Kathleen Seidel to investigate and expose their dubious activities. It looks like the New Scientist reads her blog as well. It cites her by name. So now its readers know about their phoney IRB that they use to give ethical cover to experimenting on children with Lupron.
And here’s a novelty. When my son was recruited to a research programme into autism at University College in London it did not cost us a penny. They paid all our expenses. Parents who want to enrol their children for the Geier’s research have to pay! Thanks to the New Scientist for this.
He [Geier] adds that he charges parents $500 for an initial consultation, but does not invoice them after that and so makes “virtually nothing” from his work with the families.
So let’s get this straight. The parents pay him $500. They or their insurance companies pay for all the necessary blood tests, lab work and the highly expensive lupron injections. They even administer the drugs themselves. One parent has reported sitting on his daughter to restrain her while injecting her with the drug. Geier works from his home in Maryland, a well appointed dwelling with a pool and a tennis court and a home made laboratory. He has no academic affiliation, though his son and co-author did lie about his affiliation on one of their papers. George Washington University cried, ‘Foul!’ and the paper was withdrawn and republished in a corrected version. Geier publishes the results of his “research” in obscure journals to bolster his career as an expert witness.
Last time out he did not do so well. According to his biography on Wikipedia:
Dr. Geier’s views have been found to fall outside of the scientific consensus. In a 2006 case regarding an immunoglobulin containing thimerosal which was alleged to have caused autism, Dr. Geier’s testimony was found to fall below the Daubert standard, which essentially requires expert testimony on science to be scientifically sound and represent the general consensus. As Dr. Geier provided most of the plaintiffs’ evidence, the case was thus subject to summary judgment.
Amongst the criticisms in the judge’s decisions, Dr. Geier’s literature review was found to be insufficient in justifying his claims, his lack of qualification in pediatrics was highlighted and he was found to be a “professional witness in areas for which he has no training, expertise, and experience,” whose testimony was “intellectually dishonest,” “nothing more than an egregious example of blatant, result-oriented testimony.”
The Omnibus hearings are taking place in a federal court. I only hope that, when Geier takes the stand and testifies to his research methods, his disregard for his research subjects’ [children] right to protection and his encouragment of insurance fraud will bring the Feds down on him like a ton of bricks and he can enjoy his martyrdom for the cause from behind bars.
New Scientist also mentions Robert Nataf, a French chemist.
One potential check for mercury involves a urine test for porphyrins, molecules that occur naturally in the body and bind to metals. Interest in the test accelerated last year following the publication of a paper claiming that autistic children had higher porphyrin levels than normal (Toxicology and Applied Pharmacology, vol 214, p 99).
While the researchers state in the paper that they have no conflicts of interest, lead author Robert Nataf is the founder of Laboratoire Auguste Philippe, a Paris-based clinic that sells porphyrin tests. When discussing his research with parents Nataf has also stated that he has a paper “in press” at The Lancet Neurology. Editors at the journal say they have no record of a paper by him. When asked to comment, Nataf did not clarify the situation.
If they had asked me I could have clarified the situation. It is one and the same paper. Last year New Scientist published a story about this paper. They interviewed another of the authors, Richard Lathe. I wrote to New Scientist pointing out that Nataf was telling parents that the research was going to be published by the Lancet and asked for clarification. Instead of clarifying the situation they suggested I contacted Lathe and clarify it for myself. I did and Lathe told me that Nataf had been premature. He omitted to say that the paper had been submitted to Lancet Neurology and rejected. So they had hawked it around until they found a journal with low enough standards to publish it.
Another of the authors of this paper was Lorene Amet. Amet has an autistic son. She has explored a number of therapies for him the including the Son-Rise method and ABA. Eventually she became a DAN! practitioner and set up a clinic in Edinburgh selling biomedical treatments, including chelation, to parents who can buy their porphyrin tests off her fellow researcher, Robert Nataf.
New Scientist concludes:
While Nataf’s failure to disclose his commercial interests may have breached normal publication ethics, it is likely to mean little to the parents of autistic children. Email groups dedicated to discussing the condition are full of pleas for help from parents frightened by a disease that shuts off their children from the rest of the world. Under such circumstances, says Israel parents are desperate for a cure: “If you had autistic children, would you wait for published trials, or would you treat them?
Alan Israel is one of those who profits from the parents. According to New Scientist he owns a pharmacy that sells the chelating agent DMSA to parents, a snip at a $100 for a month’s supply, and ‘treatment’ can last for years. He relies upon parents fear of “a disease that shuts off their children from the rest of the world.”
Autism is neither a disease nor does it shut children off from the world. New Scientist has made a good stab at the autism vaccine controversy. But the erroneous characterization of autism with which the article concludes is exactly the sort of thing that encourages desperate parents to seek desperate measures.
This week’s New Scientist contains the first major discussion of the Autism Omnibus Proceedings that I have seen in the UK media. There are a few minor inaccuracies. For example the Omnibus is not just about thimerosal. There are three theories of general causation proposed by the Petitioners Steering Committee: thimerosal; MMR; thimerosal and MMR combined. And the case of Michelle Cedillo with which the proceeedings have opened is based on the final hypothesis, that thimerosal containing vaccines administered in the first year of life damaged her immune system to such an extent that the MMR caused her to become autistic.
Leaving aside the particulars of individual cases the New Scientist makes some important points. After outlining the preponderance of scientific opinion against thimerosal as a causative factor in autism the New Scientist editorial goes on to say,
On the surface then, this looks like a battle between the reasoned arguments of experts and irrational parents. This is how health officials have interpreted vaccine disputes in the past, but in so doing they alienated the people they are meant to be advising.
In the UK, a similar debate kicked off in 1998, when scientist and doctor Andrew Wakefield cast doubt on the safety of the measles, mumps and rubella (MMR) vaccine. The response of the medical establishment was well intentioned but disastrous. Experts met behind closed doors and emerged to tell the public the vaccine was safe. Leaflets gave celebrity endorsements of MMR. Rather than examine Wakefield’s claims, which were shaky at the time and are now widely discredited, the government merely told parents not to be silly. Not surprisingly, parents did not buy it. Take-up of MMR fell from 92 to 82 per cent, close to the minimum level needed if isolated cases are to be prevented from developing into epidemics.
At the time of the MMR crisis I remember feeling patronized and my intelligence insulted by what seemed like another attempt to replace serious debate with a public relations spin job by the government and their officials. They made me want to believe Wakefield. And for a while I very nearly did.
Let me be clear. I am not denying. that a small number of children do have adverse reactions to vaccines, sometimes with disasterous consequences. But prior to vaccines every child had adverse reactions to the diseases we vaccinate against and many of the outcomes were tragic. I speak as a survivor of measles, mumps and whooping cough. Today’s parents may be forgiven for failing to appreciate just how serious these diseases can be. The very success of the vaccine programme has led to complacency in this respect.
It has also contributed to the high level of risk aversion in the affluent societies of the world. In my grandparents time it was expected that some children would die. Around 100 years ago infant mortality rates in the USA and the UK were horrendous. One in ten children died before their first birthday. That would put the UK and the USA in the top ten for infant mortality today ahead of countries like Ethiopia and Sudan.
Vaccination rates have contributed to the steady decline in infant mortality. As it happens the current US figure of just under 7 children in a thousand for infant mortality is slighter higher than their rate for autism.
But parents do not consider statistical probabilities when making decisions about their child. When you sit in the doctor’s waiting room with a healthy 18 month old infant in your arms the chances of them dying in infancy are miniscule compared to the chance that they might develop autism. And if there were the tiniest doubt in your mind about the safety of childhood vaccines you would walk out of that waiting room.
In reality most parents have vaccinated their children with overwhelmingly positive outcomes. But for a minority of parents the doubt has been planted post hoc and some of them have thus been led into the logical fallacy of post hoc ergo propter hoc and blame the vaccines for causing their child’s autism.
The New Scientist suggests that the way to avoid this in the future is for scientists to be
open, and admitting what science does not know. It takes time and effort, but the alternative is that parents and health officials talk past each other.
I can see their point. For a long time science has been presented as the infallible source of truth, not by scientists but by opinion makers in politics and the media. A minority of scientists may have been seduced by this and others have challenged it. But I suspect that most have got on with the job, oblivious to the impact that reports of their work have on public opinion.
However, I am not convinced. Most people’s perceptions of science are not based on what scientists say, but on media reports of what they say. And the standards of science reporting in the popular media are frankly terrible.
This is caused by a mixture of ignorance and laziness that even affects magazines like New Scientist, for whom scientific ignorance should not be an issue. Yet too often they carry short reports based on pilot studies that are not yet ready for public consumption. These are then picked up by the non-scientific media and presented as “proof positive” when no such proof exists.
As an example of laziness, their main article on the Autism Omnibus proceedings contains a reference to mercury as “a known neurotoxin.” Amongst the anti-vaxers this carries the subtext, “They knowingly injected a neurotoxin into our children.” They did it on purpose, dammit!
Is there any circumstance in which New Scientist reporters would describe a substance as an unknown neuro-toxin? The phrase, known neurotoxin, is code for a whole set of assumptions to which New Scientist certainly does not subscribe, but to which it gives unwitting approval by the careless use of language.
Overall, the New Scientist coverage is informed by support for the standards of scientific proof and rigorous criticism for those who fall short of those standards. At the same time it respects the sensibilities of those for whom autism and its causation is not primarily a discussion of scientific principle but a very personal and immediate issue. This discussion has focused primarily upon the issues raised by the New Scientist editorial. I hope to return to the substantive article tomorrow.
After 5 years of delays and legal wrangling the Autism Omnibus proceedings have finally begun. Arthur Allen has blogged about the trial and in one of his posts asks the question, Are they seriously trying to win this case? This is a good question. There are nearly 5000 children involved in the Autism Omnibus proceedings whose parents claim that either
- Thimerosal containing vaccines (TCVs),
- or a combination of the two
are responsible for their child’s autism. The omnibus amalgamates all their claims. The special masters presiding over the vaccine court will hear three test cases for each of these three potential causes. As I understand it they will decide whether these individual cases are the result of vaccine damage and award compensation accordingly. They will also decide whether the evidence in these cases supports the general theories of causation presented by expert witnesses for the claimants. If they do it will greatly ease the path of all the remaining claimants for compensation and probably bankrupt the vaccine manufacturers unless they are bailed out by the US government.
So you would expect the family selected to bat first for the claimants to represent their best shot, to be the most straightforward, indisputable case they had. You would also expect the expert witnesses in the case to be fully prepared and briefed for what is in effect a class action suit on behalf of nearly 5000 families.
Sadly, for the Cedillo family who stepped up to the mark for this historic hearing, this seems not to be the case. Left Brain/RightBrain and Autism Diva have written detailed discussions with extensive references to the transcripts of this opening case, which expose the weakness of the case presented by expert witnesses for Michelle Cedillo.
Michelle Cedillo’s is a tragic case. According to Arthur Allen
Michelle is very ill. In addition to her autism she suffers from inflammatory bowel disease, a seizure disorder and chronic eye inflammations that have left her 90 percent blind. She was pushed into the courtroom in a wheelchair because arthritis has left her unsteady on her feet, her mother testified.
But even if she wins, how can such an obviously sick child support a general theory of causation amongst autistic children who are not blind, suffering from IBS, siezures and crippled by arthritis? And it is a big if. The testimony of her expert witnesses is less than convincing. On the balance of evidence presented so far Michelle Cedillo could easily lose her case.
And what then for the family? Their daughter is seriously ill. Someone has persuaded them that her problems are vaccine related and that by pursuing this claim they will obtain the compensation that will guarantee their child’s future. The family have my complete sympathy. I do not blame the parents for believing their lawyers’ arguments and accepting the claims of these so-called experts. But if those lawyers and their expert witnesses are laughed out of court what will happen to the Cedillo family and all the other families relying on their case? Do the anti vax campaigners have their own Anti-Vaccine Injury Compensation Fund to help the families left high and dry in the wake of their failed agenda?
What do you call a journalist who reports sympathetically on the controversial idea that thimerosal in vaccines causes autism; who chooses to investigate further and changes his mind on the basis of the evidence; who then writes a book on the history of vaccines that is favourably reviewed in the Guardian, New Scientist and the New York Times?
A know nothing whore.
Well, that is what Michael Wagnitz thinks of Arthur Allen. Recently, I had cause to comment, when he wrote in similar vein about the authors of a research article that found ”no association between autism, Rh negativity and thimerosal exposure during pregnancy.” It seems to me that since Do’C and Not Mercury [here and here]effectively demolished his attempts to defend the science that purports to support the link between thimerosal and autism he has been reduced to personal abuse. Do’C has written a really good response to Wagnitz’s latest bile about Arthur Allen on Autism Street.
I have another question:
What do you call a scientist whose science does not stand up to scrutiny, who then makes unsubstantiated accusations of corruption against fellow scientists while failing to mention his own financial interest in the successful outcome of vaccine damage litigation?
Please post your answers on Autism Street. I understand that Wagnitz is more likely to read them there. And Buy This Book.
Michael Wagnitz has threatened Do’C with police action if he does not remove a link to details of Wagnitz’ outstanding vaccine injury claim from his blog. Do’C does not need the grief and has obliged. But, as I do not believe that the jurisdiction of the Madison Police Department extends to the UK, I invite my readers to follow this link and scroll down to the bottom of page 3 to read number 92 in list of claimants for vaccine injury compensation.
THE APPLIANCE OF SCIENCE
Kev has just blogged about a piece of research that examines the effects of Rhesus immune globulin (RhIg) on mothers of autistic children. RhIg is routinely given to pregnant women who are Rhesus negative to stop their immune systems from attacking their unborn babies. Because RhIg used to contain thimerosal, anti vaccine pressure groups who blame thimerosal for causing autism, have tried to implicate RhIg as well. A recent attempt to link an RhIg called Rhogam and Autism collapsed when the judge decided that the expert witnesses in the case were not up to the required standard. Kev blogged this as did Autism Diva, Orac, and Prometheus while Kathleen provided a HTML version of the decision on neurodiversity.com
According to a press release issued by the University of Missouri-Columbia
The results showed that in children with autism, Rh negative status was no higher in their mothers than in the general population, that exposure to RhIg (preserved with thimerosal) before birth was no higher and that pregnancies were not more likely to be Rh incompatible.
The press release quotes researcher, Judith Miles as saying,
We hope this report of no association between autism, Rh negativity and thimerosal exposure during pregnancy will offset some of the decreased compliance with immunization recommendations which is known to increase morbidity and mortality from childhood infectious diseases.
KNEE JERK REACTION AND FOOT IN MOUTH
This has produced a predictable response from Safe Minds spokesman, Mark Blaxhill, which Kev has demolished. But others are even more intemperate. Take Michael Wagnitz, for example. Writing online for the American Chronicle, in the space of 500 words he manages to imply that:
- The researchers have been bought off by Johnson and Johnson to fabricate results that will aid them in vaccine damage litigation. Specifically he accuses them of suppressing data.
- Originally, it was stated that the study contained 47 mothers with more than one child with autism. The published study lists only 16 such cases. Where did the other 31 cases go? Did they just disappear because they did not support her conclusion? Is this proper scientific ethics? This “data adjusting” is becoming quite common by mainstream autism researchers
- They are deliberately sacrificing the interests of autistic children to promote their careers.
- As a major player in the autism is a psychiatric condition caused by some unknown gene, the author knows that billions of dollars in research money is out there to be had. What will become of these “mercury apologists” if these kids ever receive proper treatment for what is causing their illness? Their multi-million dollars of funding will dry up. Their arrogant, controlling power trips will be over. They will become irrelevant.
- A previous paper was ”solicited” by Pediatrics and contained serious factual errors
- One paper cited, Nelson and Bauman 2003, was a paper solicited by Pediatrics to say that thimerosal does not cause autism. This paper was received and published on the same day. Did this paper even go through the peer review process? This paper is infamous for stating that ethyl mercury does not enter the brain.
Wagnitz is either ignorant or a liar. Here is a quote from the original paper.
The passage of methyl mercury across the blood-brain barrier is facilitated by an active transport mechanism, whereas the passage of ethyl mercury into the brain does not have such a transport system and is further hindered by its larger molecular size and faster decomposition.32 At equivalent doses, higher levels of mercury have been found in the blood and less in brain following administration of ethyl mercury than methyl mercury.33 These findings support the observation that the risk of toxicity from ethyl mercury is overestimated by comparison with the risk of intoxication from methyl mercury.34 Ethyl mercury exposure has been reported to be more likely than methyl mercury to produce lesions of the spinal cord, skeletal muscle, and myocardium.8
In other words, Nelson and Bauman were arguing that exposure to ethyl mercury delivers less mercury to the brain than methyl mercury, not no mercury. Now, according to his byline on the American Chronicle, Michael Wagnitz has over 20 years experience evaluating materials for toxic metals. He currently works as a chemist in the toxicology section of a public health lab evaluating biological samples for lead and mercury. So I assume he knows how to read a journal article. Perhaps he was distracted by thoughts of his own vaccine damage case on behalf of his autistic child. This is a potential conflict of interest that he fails to mention in any of his articles about mercury and autism.
THE CURIOUS CASE OF …
Now, it is a curious fact that, while the mercury malicia automatically cast doubt on the credibility of any scientist whose work contradicts their case on the grounds that all scientists have sold their souls to big pharma and big government, if on the other hand a scientist can be persuaded to support their case, his or her scientific credentials are trumpeted to the heavens as incontrovertible proof of their reliability, impartiality and all round good guy credibility. Thuswise is Michael Wagnitz elevated to stardom by Ginger Taylor who gushes over the fact that Michael Wagnitz is an actual chemist who understands mercury.
Science operates via peer review. Someone or somebody’s research team suggests a hypothesis. Someone else comes up with an idea to test it. Somebody does the test and presents their work for publication. Fellow professional do the peer review. They look at the work and decide if it is worth publishing. It is. LUCKY YOU!
Peer review does not operate via bullying, lying, smear tactics or any other strawman or ad hominen attacks. This is in stark contrast to most of the outpourings of the litiginous mercury malicia. They are distorting science with their unreal and unscientific demand for certainty. They demand answers. Mostly all we have at present are questions.
I have just started watching the video of the debate between David Kirby and Arthur Allen on the subject of autism and vaccines. Kirby wrote a book, Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy which starts from the premise that the rapid growth in recorded cases of autism in the USA that began in the early 1990s represented a real growth in numbers and could not be explaind by increased awareness, better diagnostic procedures or a change in the criteria. There had to be an environmental trigger. At the same time changes in the mandatory vaccination programme for children in the USA increased exposure to thimerosal, a preservative that contains ethyl mercury.
Did the thimerosal cause an autism epidemic? Kirby believes it did. Allen once thought it was a credible hypothesis. But in the course of researching his book, Vaccine, the Controversial Story of Medicine’s Greatest Lifesaver, Allen changed his mind. Allen has also begun to question whether there has been an epidemic or not. See his review of Roy Grinker’s book, Unstrange Minds, Remapping the World of Autism.
I was looking forward to the debate. But within minutes I was hitting the pause button and diving into my archive of autism related papers. Kirby began, quite rightly, with a discussion of epidemiology. But his version seemed at odds with what I thought I knew. Still, this was an important debate. Kirby must have checked his facts beforehand. So I went to check mine.
Kirby’s Fact 1.
In the 1980s autism prevalence in the USA was between 1 and 2 in 10,000
If anyone has a reference to an epidemiological study for this extremely low figure I would love to have it. When Lorna Wing surveyed the major epidemiological studies carried out between 1966 and 1992 she referred to two studies in Utah (Ritvo et al 1989) and North Dakota (Burd et al 1987) that found rates of 4 and 3.3 in 10,000 respectively for DSM III autism which use very similar criteria to Kanner’s criteria. She also mentioned a study by Treffert which found a prevalence of 3 in 10,000 in 1970 in Wisconsin. When I considered Wing’s survey in an earlier post I remarked upon the robust nature of the figures. Researchers who combined consistent epidemiological methods with Kanner’s diagnostic criteria found rates of between 4 and 5 in 10,000.
Kirby’s Fact 2.
In the late 1990s autism prevalence in the USA was 20 in 10,000
Kirby offers no citations for this figure. Probably the most well founded study in the USA in the 1990s was by Yeargin-Allsopp et al in Atlanta in 1996 which found a rate of 34 in 10,000 in 3-10 year olds. It was reprinted in JAMA in 2003. In the same edition Fombonne considers this an underestimate and thinks the 5 to 8 year olds in the study provide a more reliable estimate of 41 – 45 in 10,000. (JAMA 2003 Volume 289 Issue 1.)For comparison Wing and Gould found a rate of 20 in 10,000 in the Camberwell study in 1979. This study confined itself to children with learning dificulties in special schools and never looked at children in mainstream classes where most autistic children are found today.
Kirby’s Fact 3.
By 2000 autism prevalence in the USA was 40 in 10,000
Again there is no citation. And autism prevalence in whom? What is the age cohort?
Kirby’s Fact 4.
By 2004 autism prevalence in the USA was 60 in 10,000
We do have a lot of epidemiology for this figure.It is supported by the Medical Research Council in the UK and the Centers for Disease Control in the USA. But it is usually taken to mean that we have now reached a reasonably accurate estimate of prevalence figures for the entire autistic spectrum across the entire population. Kirby sems to be using these figures to suggest a year on year increase in incidence which is not the same as prevalence. Generation Rescue made a similar mistake last year which I commented on.
When you are dealing with statistics it is important not to get incidence and prevalence muddled up. Incidence refers to the number of new cases in a population over a period of time. Prevalence refers to the total number of cases in a given population at a specific time.
Kirby’s Fact 5.
By 2004 th USA figure of 60 in 10,000 was the same as in the UK. But the USA had 40 in 10,000 with autstic disorder and only 20 in 10,000 with other ASDs. In Britain the figures are reversed: 20 in 10,000 with Autistic disorder and 40 in 10,000 with other ASDs.
Kirby’s explanation is simple. Here in the UK we only ever had half the thimerosal in our vaccines compared to our American cousins. So we only got half the autistic disorder. OK. Thimerosal causes autistic disorder. There is a linear relationship. Double the thimerosal and you double the autistic disorder. So what causes PDD-NOS and Asperger Syndrome? Why should they be twice as prevalent in the UK as in the USA? Is that environmental or genetic? Perhaps we Brits are naturally more high functioning than the Yanks
By this time I was beginning to get a little bit sceptical about Kirby’s figures. He actually did mention a source for his 40 in 10,000 with autistic disorder, Brick Township. I remember that one; 40 in 10,000 for autistic disorder is correct. But the figure in Brick Township for other ASDs was not 20 in 10,000. it was 27 in 10,000. 67 in 10,000! That is a lot of autism, except for one fact. It was a very small sample; 60 children aged 3 to 10. The authors acknowledge the problems in generalizing from their data.
As mentioned earlier, the major limitation of this study was an inability to ascertain higher functioning individuals who were not in any special education class in public schools or had not been seen by participating clinicians. Consequently, because of these case-finding limitations, the results from Brick Township must be considered a minimal prevalence for autism. Categorical distinctions between autistic disorder and the other ASD were probably limited because the ADOS-G has been found to over estimate autistic disorder relative to PDD-NOS. Also, because clinical assessments could not be conducted for 17 children and the diagnosis had to be based on records alone, the reliability and validity of the diagnosis for those children is limited. Discrimination between PDD-NOS and autistic disorder also may have been influenced for these cases given that over 56% of the children who participated in the clinical assessment were determined to have autistic disorder in comparison to only 27% of the children assessed by record review only. Finally, the prevalence rates for autism obtained in this study must be generalized with caution since the community was selected for study because of a suspicion of increased numbers of children with the disorder. Studies of larger populations, such as one that included surrounding communities, may yield different findings.
They may indeed.
Kirby’s Fact 6
Denmark removed all its thimerosal way back in 1992 and it has a rate of only 8 in 10,000.
Yes, except that according to this study autism rates went up in Denmark after they removed the thimerosal. Actually the base rates for autism in this study were so low it is ridiculous, less than 1 in a 1000 throughout the seventies and eighties. That is less than Brask found in 1972 in Denmark for Kanner’s autism. (4.3 in 10,000) A more recent study suggests the real rate for ASDs in Denmark is closer to the 34 in 10, 000 that Yeargin-Allsopp found in Atlanta in 1996. the authors conclude:
We found that the estimated prevalences of the PDDs studied were probably underestimated. Furthermore, the increasing prevalence and incidence rates during the 1990s may well be explained by changes in the registration procedures and more awareness of the disorders, although a true increase in the incidence cannot be ruled out.
So much for Denmark then. I cannot say that I am looking forward to the rest of this debate if this is the standard of evidence employed by Kirby. But I will resist the temptation to fast forward to Arthur Allen. I will do my blogging duty. Speaking of Arthur Allen, he has written about the debate on his blog and is open to comments. Kirby, despite boasting that whenever he writes on the Huffington Post he goes straight to number one, has yet to share his thoughts on the debate with a wider audience.
STOP PRESS Kirby has made the slides from his presentation available on his website. I wont be downloading them just yet. I don’t want to spoil the ending.
to be continued …
LET NIMH HEAR YOUR VOICE
I have blogged about the NIMH research programme into autism before . Like most autism research it has a strong medical bias, looking for causes and cures. But if you devote most of your research budget to trying to eliminate autism what does that do for current generations of autistic people? Even assuming that the scientists do find a medical way of making autistic people normal that still leaves enormous questions.
Would it make them into better people?
Would it make them into happier people?
Would it be right to do it and should they have the right to refuse?
Who would choose for autistic children?
Because autism is so complex I suspect that it will be a long time before we have to answer those questions. What if we spent the money increasing our understanding of autism and finding ways for autistic people to get on in the world? The National Autistic Society helped to set up Research Autism in the UK precisely because there is so little decent research evaluating the interventions that are supposed to help autistic people.
And if we just see autism as a medical problem we are missing the point entirely. Some autistic people have mental health problems. Some of them have epilepsy. Some of them have severe learning difficulties. (UK English = retardation in US English) Some of them have disturbed behaviour. So do lots of non-autistic people. It is useful to inquire into whether or not any of these problems are more common in the autistic population than in the non-autistic population. It is also important to ask why. How much depression in autistic people is caused by our lack of understanding and the media message that they are damaged, doomed individuals? But we also need to investigate the strengths and appreciate the value of autistic people, whatever their difficulties.
If you think the medical model is doing a disservice to autistic people I urge you to visit this petition, asking the NIH to rethink their views on autism research. Autism Diva has an excellent post on this subject and further advice on how concerned US citizens can make their voice heard.
Coming soon in San Diego (Saturday 13 January) is a debate between David Kirby, author of Evidence of Harm and the subject of my previous blog and Arthur Allen who has written a new history of vaccines. It looks like the meeting is going to be packed with anti-vaxers who do not think that autism is so complex – its mercury poisoning doncha know? - and do not share my concerns about imposing a cure. So checkout this flier and if you can get along there and give Arthur some backing I am sure he will appreciate it. You can buy his book afterwards and he will sign it for you.