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Autism Speaks pushes the “legislative history” myth about the Combating Autism Act

11 Nov

Autism Speaks has announced (possibly incorrectly) that the IACC (Interagency Autism Coordinating Committee) has included vaccine language in the Strategic Plan.

Autism Speaks has posted their statement on their website.

Here is the statement (from their press release):

In enacting the Combating Autism Act (CAA), Congress intended that the federal government examine potential links between vaccines and autism. During the Senate debate over the CAA, Mike Enzi, Chairman of the Senate Health, Education, Labor & Pensions Committee, instructed that “no research avenue should be eliminated, including biomedical research examining potential links between vaccines, vaccine components, and autism spectrum disorder.” 152 Cong. Rec. S8772 (Aug. 3, 2006). In the House, Joe Barton, Chairman of the House Energy and Commerce Committee, was equally clear: “[T]he legislation rightfully calls for renewed efforts to study all possible causes of autism – including vaccines and other environmental causes… The important thing to understand is that there are no preconceived notions contained in this bill; the bill language is clear that we should follow every avenue that science opens to us in searching for a cure.” 152 Cong. Rec. H8787 (Dec. 6, 2006)

Beyond this clear directive of the CAA, Autism Speaks supports rigorous, evidence-based scientific research onto all aspects of autism from potential causes, including both genetic and environmental factors, to diagnosis and treatments. As such, we strongly urge that further vaccine safety research be included in the Strategic Plan for Autism Spectrum Disorder Research. Comprehensive “good” science should be the standard in all areas studied and there are aspects of vaccine safety research that have not yet been, and should be, considered.

It is also essential that all scientific research recommended by IACC and funded by the NIH be rigorous and evidence-based to engender the trust of the scientific, medical and entire autism community. Without a solid foundation that supports confidence in scientific conclusion, the entire portfolio of scientific research is at risk of losing community trust. Further, vaccine safety research will increase both the level of confidence in the safety of our nation’s vaccine program and the rate of participation, which is absolutely crucial for the prevention of serious infectious diseases.

Autism Speaks calls on the IACC to consider the importance of evidence-based science, trust, and to remain true to the critical legislative purpose of the Combating Autism Act and asks the IACC to include vaccine safety research in the strategic plan.

The statement that vaccine research is a “clear directive of the CAA” is, simply, false.

The CAA (Combating Autism Act) does not include the statements by congressman Barton and Senator Enzi are part of the congressional record. They are statements made by the individual legislators.

They are not a part of the Combating Autism Act, much less a clear directive of the Act.

IACC includes vaccine language in strategic plan?

11 Nov

I was unable to listen to yesterday’s meeting. But according to a press release from Autism Speaks:

Autism Speaks is encouraged by yesterday’s decision of the Interagency Autism Coordinating Committee (IACC) to include vaccine research studies in the objectives of the updated Strategic Plan for Autism Research. The new language, approved unanimously, calls for studies to determine if there are sub-populations that are more susceptible to environmental exposures such as immune challenges related to naturally occurring infections, vaccines or underlying immune problems. “This revised plan is an important step toward a more comprehensive approach to exploring the wide range of risk factors that may be contributing to autism,” said Geraldine Dawson, Ph.D., Autism Speaks chief science officer.

AoA Circulates H1N1 Hoax

6 Nov

On October 27, AoA posted an article titled “Without Vaccine, Australia Shrugs Off Swine Flu”, By David Burd. This article consists of a string of claims clearly at odds with reality:

“(Australia has) no vaccine available for H1N1 flu…”

The University of Queensland claimed to have manufactured the first litre of an H1N1 vaccine made in Australia on June 29, 2009. Large-scale immunization began on September 28.

“Australia recently ended its 2009 `Flu Season’ (their Winter in our Summer), with 186 flu-associated fatalities of 36,991 Aussies confirmed having H1N1.”

Australian authorities openly acknowledge that their “official” numbers are very incomplete. Many possible cases have gone unconfirmed, due to limited resources and the rapid accumulation of reports. It is possible that a significant number of deaths went intentionally unreported, to circumvent government rationing of antiviral drugs. In any event, H1N1 is presumably still spreading, as the number of officially acknowledged cases has continued to grow. On October 26, the day before Burd’s article was posted, a new report acknowledged 37,039 cases, 48 more than the Oct. 21 report which provided Burd’s figure.

“Canadian front page news on flu vaccinations has transfixed Canada health authorities, prompting official suspension of regular flu vaccination programs until further notice.”

What actually happened is that authorities in one province of Canada decided not to give the H1N1 vaccine to those over 65 H1N1 vaccine production and distribution has not stopped and may accelerate. A Canadian commenting on an earlier essay of mine has said, “The only temporary suspension that occurs is when we run out of vaccines…”

“This comes from a sweeping study of Canada by research Doctors Danuta Skowronski of the British Columbia Centre of Disease Control and Gaston De Serres of Laval University in Quebec concluding Canadians receiving flu vaccinations have twice the risk of coming down with the flu, compared to those who do not take the shot.”

The study in question did not claim that receiving an H1N1 vaccine increased the risk of H1N1 infection, which is almost certainly what Burd wishes to imply. Rather, it claimed that those who had received the seasonal flu vaccine in 2008 were at higher risk of catching H1N1 during the following year. Skowronski openly admitted that an actual causal relationship is open to debate.

“(On Oct. 4) U.S. doctors offered the opinion that the Canadian doctors’ flu vaccination study was certainly wrong and must have used flawed study parameters, though (they) admittedly could not identify anything specific.”

No later than September 26, CDC spokesman Joe Quimby stated, “(S)cientists at the Centers for Disease Control and Prevention have not seen this effect in systems we have reviewed in the U.S.”

The most benign interpretation of this article is that Burd has credulously accepted a number of possible “urban legends”. I think there can be little doubt that modern “legends” are involved. I find the claim that H1N1 vaccination has been suspended in Canada, in particular, plausible as a “real” Canadian rumor. Bogus reports of current or impending changes in US government policies are a common type of “urban legend” in the US itself, and it is only to be expected that other nations would be subject to similar lore. But, such bogus reports often merge into hoaxes and scams. (A commonly aired suspicion is that individuals or groups create or promote legends about their enemies.) I am inclined to interpret Burd’s article (and AoA’s publication of it) as more in the vein of a hoax. Even if they more or less believe the story, it is hard to regard its posting as anything but cynical posturing.

Urban legends about H1N1 and its vaccines are already being noted, as in a chain email about a hospital supposedly warning staff not to be vaccinated. Such rumors can be recognized questioned promptly by looking for the following “clues”:

1. The report is more like a personal narrative than “news”, particularly in giving very specific details about people and events without specific dates, locations, etc.
2. The narrative, or a part thereof, is attributed to someone other than the immediate source or an acquaintance thereof (the infamous “friend of a friend” tale!)
3. The narrative features what I call a “phantom quote”: a sensational statement by a supposedly authoritative but unnamed or unfamiliar source.
4. Statements by named and familiar sources are not easily found or verified, for example being without a given broadcast or publication date, or especially being allegedly censored before wide distribution.
5. You have already heard a similar story with differences in key details.

By recognizing such clues, one can recognize a fundamentally suspicious story even before trying to verify it independently. Being on guard at first hearing may well be a better defense against the spread of disinformation than any amount of subsequent investigation.

David N. Brown is an AS adult living in Mesa, Arizona. He is author of the ebook The Urban legend of Vaccine-Caused Autism and several works of fiction, and creator of the autism website evilpossum.weebly.com.

Evaluation of Immunization Rates and Safety Among Children with Inborn Errors of Metabolism

2 Nov

Ever since the Hannah Poling case became public, and especially give the way in which David Kirby has presented the case, there has been a question of whether vaccines can cause regressions in children with inborn errors of metabolism (mitochondrial disorders are a subset of these).

I discussed one very recent paper Fever Plus Mitochondrial Disease Could Be Risk Factors for Autistic Regression. Commenter and LBRB blogger Joseph made the very correct observation then:

I’d say it’s potentially interesting, but limited. In order to tell that something is a risk factor, you need a case-control study.

More specifically, can self-selection bias be discounted in this study?

It is encouraging to see that such studies into this question are being staged. Here is the abstract from a study presented 2009 Infectious Diseases Society of America titled, Evaluation of Immunization Rates and Safety Among Children with Inborn Errors of Metabolism.

Abstract

Background: Children with metabolic disorders are a potential high-risk group for vaccine-preventable diseases. Despite recommendations that they receive all routine immunizations, information regarding both immunization rates and safety data within this population is lacking.
Methods: Using Northern California Kaiser Permanente’s (NCKP) integrated electronic medical record, we identified children up to age 18 years who had an inborn error of metabolism (IEM) from 1990 to 2007. We assessed immunization rates among a subset of infants with IEM born at NCKP who were members until age 3 years matched to healthy infants (1:20), comparing both immunizations received by age 2 years and timing for receipt of vaccines. We next separately assessed for adverse events after immunization by using self-controlled analyses among all children up to age 18 years with an IEM who received at least 1 vaccine at any time, comparing emergency room visits and hospitalizations during post-vaccine days 0-30 to post-vaccine days 31-60.
Results: We identified 79 infants with IEM who were born and remained a member of NCKP at age 3 years. Compared to 1580 matched controls, there was no difference in the proportion of children with IEM up to date for vaccines at 2 years, nor was there any delayed receipt of recommended vaccines during the first year. We also preliminarily identified 322 children with IEM who received any vaccine. Preliminary analysis in this group did not detect an increase in emergency room visits [rate ratio (RR) 0.83, 95% confidence interval (CI) 0.60, 1.14] or hospitalizations (RR 1.1, 95% CI 0.9, 1.4) during the 30 days after vaccination compared to post-vaccine days 31-60.
Conclusion: Children with metabolic diseases in this cohort were vaccinated at rates comparable to healthy children. Although sample size is a limitation, preliminary evidence does not suggest an association between vaccination and an increased risk for serious adverse events.

Emphasis added.

A news story on the subject quoted the session chair where the study was presented:

“These findings are very reassuring,” said Larry Pickering, MD, National Immunization Program, Centers for Disease Control and Prevention, and Emory University, Atlanta, Georgia, who moderated the session at which the study was presented.

“Most of us who take care of kids with inborn errors of metabolism think vaccination is one of the best interventions we can offer them,” he said. “They are at increased risk for devastating complications, even death, from the diseases that the vaccines prevent.”

This is reassuring. Preliminary, yes. I can already see the criticisms, both legitimate and otherwise, that will be levied against this study. but potentially very reassuring. Vaccines are one of the front line interventions in protecting people with mitochondrial disorders.

Let’s see if I can predict the criticisms:

1) not peer reviewed
2) many authors received grant money from vaccine manufacturers.
3) the sample size is small (79 infants)
4) the number of infants with mitochondrial disorders is even smaller (7)
5) it would be good to see a comparison of hospitalizations in the months previous to immunizations (if possible)
6) the time spanned by the study covers a large change in the immunization schedule. The sample size of infants immunized in the current schedule is likely to be rather small.

The sample size is small, but it would be interesting to see if the prevalence of metabolic disorders has increased over this time span. But, as autism has shown us, the correlation=causation arguments can be shaky at best.

Why don’t the so-called “vaccine safety” orgs talk about vaccine safety?

30 Oct

I really do plan to get back to real autism related subjects. I do. This subject just came up yesterday and it really bugs me so I decided to write something quick.

One of the most common statements from the groups (Generation Rescue, Think About Curing Autism (TACA), the National Autism Association, SafeMinds….) who promote the vaccines-caused-autism-epidemic idea is that they are “vaccine safety” groups, not “anti-vaccine”. The self-named “National Vaccine Information Center” is, I would think, supposed to have vaccine information.

One vaccine these groups love to hate is Rotateq, a vaccine against rotavirus infection. Why? Because it was invented by a team including Dr. Paul Offit, who just so happens to be one of the most vocal critics of the vaccine-caused-autism-epidemic.

Take, for example, this comment by SafeMinds member, and Age Of Autism blogger Mark Blaxill:

“Paul has saved hundreds of thousands of lives (granted mostly in underdeveloped countries, but rotovirus still kills a small few in the US).”

That’s quite an extravagant assertion, and almost certainly false. What evidence do you have that Rotateq (Offit’s invention) has been adminstered in sufficient quantities to prevent death in developing countries from complications of diarrhea? Rotateq is deployed in only one country besides the US. Here in the US we know Rotateq (and Rotashield before it) has CAUSED death and have little information that it has prevented any.

The consistent hyping of the benefits of marginally beneficial vaccines is one of the most disturbing features of a vaccine development industry run amok. Rotateq is perhaps the most egregious example of a vaccine product that provides next to zero benefit in the markets in which it has been deployed.

Let me be clear. In the markets in which it might have value, Rotateq is far too expensive to be widely deployed and is therefore rarely used. In the markets in which it is not needed, it is mandated at high prices and used widely with little benefit and documented (and almost certainly underestimated) serious risk. Those mandates and high prices are justified by a marketing non sequitor that Josh perpetuates here: pointing to deaths outside the geography in question as justification for a vaccine blockbuster that can have no impact whatever on those deaths.

Orwell never dreamed of doublespeak as bad as this.

What made this comment stick in my mind is the unsupported claim that Rotateq “CAUSED” death (nice use of all caps, there, by the way).

I am also drawn to the common belief (not directly expressed in the above quote) that there is no or only minimal safety research done.

This week, the CDC put out an MMWR (Morbidity and Mortality Weekly Report) on the effects of Rotateq. The cliniical trial showed that Rotateq works. The surveillance shows Rotateq works–the number of submitted samples that tested postive went down after Rotateq was introduced.

The big point I’d like to bring to light was a recent talk given at the Advisory Committee on Immunization Practices (ACIP) meeting. They are monitoring intussusception in children given Rotateq. Intussusception is an intestinal problem, potentially fatal, that was linked to the previous rotavirus vaccine. It is why that vaccine, Rotashield, was pulled from the market. As such, it is good an proper that they monitor intussusception with Rotateq.

The results?

Results provide no evidence that RotaTeq®receipt is associated with an increased risk for IS [intussusception] 1-30 days or 1-7 days following vaccination.

Typically those trying to claim that Rotateq is dangerous use the Vaccine Adverse Events Reporting System (VAERS). Any event reported to VAERS is taken to be caused by the vaccine. VAERS is a “passive” system. People report into VAERS and no one checks that the diagnoses are accurate. Also, intussusception happens even without vaccines. So you really can’t take every VAERS report as a causal event–i.e. just because someone reports to VAERS that a child had intussusception sometime after Rotateq, that doesn’t mean Rotateq caused it.

Do I expect people like Mr. Blaxill to stop claiming that Rotateq is dangerous? No. But I put this out there to take away any last shred of “plausible deniability”. They, the self-styled “vaccine safety” groups, don’t report on actual vaccine safety studies. That doesn’t mean they don’t read them and know about them.

Amy Wallace discusses the responses she got to the WIRED article

28 Oct

A recent article in WIRED magazine took a close look at the vaccine/autism discussion. I discussed it briefly in a previous post. The article took a very science-oriented stance which, you can imagine, did not please the vaccines-cause-autism organizations.

For example, the “vaccines-cause-autism” organizations are listed by WIRED as “anti-vaccine” organizations.

The WIRED piece has caused a stir, even outside of the autism communities. Ms. Wallace’s piece has been noticed by Time Magazine, MinnPost.com, and The Atlantic. Oh, and some of the “anti-vaccine” orgs blogged about it too.

Not surprisingly the author of that piece, Ms. Amy Wallace, received a lot of responses to her article. In an interesting move, she has discussed many of the responses on Twitter. These have been compiled on the “bastard sheep” blog.

In addition to the WIRED article getting noticed, the responses are getting noticed. The Terra Sigillata blog has a piece up. The LA Times LA Observed has a piece on their blog.

Let’s take a closer look at the responses. She got about 250 so far, with about 3:1 in favor of the article. Some of the responses from her twitter feed: Some responses, like the one noted in Terra Sigillata, were quite harsh. Here are a couple:

I’ve been told I’ll think differently “if you live to grow up.” I’ve been warned that “this article will haunt you for a long time.”

“If she lives to grow up”? Pretty clear threat there.

She has every right to complain. Instead Ms. Wallace has reported on these comments, but for the most part she hasn’t added commentary. This hasn’t stopped her detractors from calling her a “cry baby”.

I’ve been called stupid, greedy, a whore, a prostitute, and a “fking lib.” I’ve been called the author of “heinous tripe.”

This is one view the outside world is getting of the autism communities. Does anyone think this is helping? OK, there are the small minority. So, to be more precise, does anyone reasonable disagree with the idea that this hurts the autism communities?

Here are some more comments she received that focus more on the autism communites:

In his book, Autism’s False Prophets, Dr. Offit writes about scientists who have been intimidated into staying silent about autism/vaccines. If scientists – who are armed with facts and trained to interpret them – are afraid, can it be any surprise that a lot of parents are, too?

No, it isn’t a surprise. Sad, yes. Surprise, no.

One persistent theme in their emails is the idea that vaccination policies abridge our civil rights. As one reader put it, “Me and mine are not a herd. Human beings are capable and entitled to decide for themselves what to put in our bodies.” Another mom wrote, “The PARENT knows their child more than anyone in the world. The PARENTS, Ms. Wallace, NOT Mr. Offit.” Another said, “I have a Son that needs Me – not another needle.”

To which Ms. Wallace responded rather well:

This idea – which we discuss in the Wired story – is powerful: that parents, not medical experts, should be the ultimate authority on their children’s health. To which I say, with all due respect, and as a parent myself: loving your child doesn’t make you an expert. It makes you a devoted parent.

Ms. Wallace goes on to state:

The dominant emotion in even the angriest emails to me is despair. Forget the vitriol, the slurs, the insults. The despair is what I find truly painful to read.

Which she follows with this comment from a parent:

“Those of us with autistic children are really sick of you know-it-alls,” one mom wrote me. Then she delivered the best description of what a loving parent wishes for their child that I have received so far. “I want my daughter to feel like a ‘typical’ child,” she wrote. “I want her to experience ONE day of no GI pain or headaches. I want my daughter to be able to gain weight and be able to have enough energy to play on the playground with her friends. So, in between therapies, doctors’ appointments, crying, diarrhea, no friends, trouble with school, countless vitamins to keep her tiny body going and being near bankrupt, you think I want to be in this fight?”

Ms. Wallace responds:

No, I don’t think she wants to be in that fight. Who would? Autism can be truly devastating to families. There is no debate about that. Which is why – as so many parents have said — every available research dollar should be aimed at finding the causes of the disorder

Leaving aside the discussion of whether autism is a medical condition for the moment (although I expect and welcome comments on this):

With all due respect, here Ms. Wallace made a common mistake in equating understanding causation with progress towards therapies. Ms. Wallace seems to have bought into the assumption that if we know the causes, we will automatically know treatments. Well, yes and no. Yes, understanding causation may help in many cases. At the same time, in many cases it likely will not.

Take, for example, the idea that autism is vaccine injury. The alternative medical community already assumes autism is a vaccine injury. They already claim to be treating autism as vaccine injury. Do they have a “cure”? No. Do they even have any proven therapies? No. For that matter, are any of their therapies really based on treating vaccine injury, as they claim? No. As a simple example: can anyone point to a truly innovative therapy that Andrew Wakefield (father of the MMR-causes-autism theory) has developed?

Consider HBOT (Hyperbaric Oxygen Therapy). Can anyone give a clear explanation how that ties into vaccine injury? The closest “therapy” based on vaccine injury proposed so far is chelation. The removal of mercury from a body supposedly mercury poisoned from vaccines. The latest study, from their own researchers mind you, shows it is as effective as a placebo. Which is a nice way of saying: chelation doesn’t work.

I am not saying that causation research is useless. Far from it. However, it is neither necessary nor sufficient to produce the medical therapies many parents are searching for to treat their children.

I’ve gone off track from reporting the responses Ms. Wallace received to her piece. I’ve probably also sidetracked the discussion that will happen here.

Today Ms. Wallace added some comments she has received from autistics.

n the past week or so, I’ve heard from several people who said they were on the autism spectrum. They all said they enjoyed the article. What they don’t enjoy, however, is hearing themselves described as people that no one wants to be.

I’ll end with one comment out of those tweets:

“I have Autism. But: I am a person, not a problem. I am an asset, not a subject. I’m not a lab mouse, I am human.

Number of cases before the vaccine court drop off dramatically

28 Oct

We often hear about how there are about 5000 cases before the vaccine court claiming autism as a vaccine injury. What we don’t hear is that almost all of those cases were filed years ago.

Take a look at the data on the number of cases filed per year. Or, take a look at this graph I made of the data (click to enlarge):

Cases submitted to the vaccine court by year

Cases submitted to the vaccine court by year

Red shows autism cases filed. Black shows non-autism cases.

Not much needed in the way of discussion. Autism cases peaked in 2003, six years ago. Autism cases are now at about the same level or less than non-autism cases. It has been low and flat since about 2006.

I know I’ve done a lot of vaccine-oriented posts lately. This is a good indication that I need to spend time on other subjects.

Are blood mercury levels an important metric in autism?

26 Oct

A recent study shows that autistic children do not have more mercury in their blood than typical children. When it came out I didn’t have time to discuss it. I have some time now, and other people have blogged it, so I decided it was time to address some thoughts here.

The study, from the U.C. Davis MIND Institute: Blood Mercury Concentrations in CHARGE Study Children with and without Autism concluded:

After accounting for dietary and other differences in Hg exposures, total Hg in blood was neither elevated nor reduced in CHARGE Study preschoolers with AU/ASD as compared with unaffected controls, and resembled those of nationally representative samples.

This paper and its conclusion were sure to be criticized by the alternative-medical autism community. Why? because the autism communities are still battling the idea that autism is a “novel” form of mercury poisoning. Anything, no matter how small, that challenges that idea will be (and is) challenged.

The idea that autism and mercury poisoning are similar was put forth in a paper in the pseudo journal Medical Hypotheses. The paper, Autism: a novel form of mercury poisoning, by SafeMinds founders Bernard S, Enayati A, Redwood L, Roger H, Binstock T., purported to show similarities in autism and mercury poisoning.

The abstract of the SafeMinds paper states:

Autism is a syndrome characterized by impairments in social relatedness and communication, repetitive behaviors, abnormal movements, and sensory dysfunction. Recent epidemiological studies suggest that autism may affect 1 in 150 US children. Exposure to mercury can cause immune, sensory, neurological, motor, and behavioral dysfunctions similar to traits defining or associated with autism, and the similarities extend to neuroanatomy, neurotransmitters, and biochemistry. Thimerosal, a preservative added to many vaccines, has become a major source of mercury in children who, within their first two years, may have received a quantity of mercury that exceeds safety guidelines. A review of medical literature and US government data suggests that: (i) many cases of idiopathic autism are induced by early mercury exposure from thimerosal; (ii) this type of autism represents an unrecognized mercurial syndrome; and (iii) genetic and non-genetic factors establish a predisposition whereby thimerosal’s adverse effects occur only in some children.

The paper is discussed on the SafeMinds website as a “cornerstone document”:

In April of 2000, SafeMinds founders put forth the first definitive work reviewing the link between mercury and Autism Spectrum Disorders. This effort showed that the autism presentation mirrored mercury toxicity. This research was key to propelling the issue into the awareness of the public and government officials. The resulting report, “Autism: A Novel Form of Mercury Poisoning” (Bernard, Enayati, Redwood, Roger, Binstock) was and remains recognized as a cornerstone document to the discourse on medical mercury exposure and toxicity and its effects on health.

They still hold to this idea, even though the it has been thoroughly rejected by actual specialists in mercury toxicity. Heck, it’s been rejected by non-specialists. Autism and mercury poisoning are just not the same thing.

If you spend any time with the online autism community you already know the mercury hypothesis is still alive and well. Chelation, a drug therapy to remove some of the body’s mercury burden, is still applied to autistics by alternative medical practitioners. Join one of many autism discussion groups and the idea is bound to come up.

Given that, it may seem counterintuitive that the evidence for the mercury hypothesis is so weak that any study that purports to support it is quickly cheered by the alternative medical community.

Such was the case when, in 2007, two researchers looked at what was then an already existing dataset of blood mercury levels in autistic children and declared that contrary to the previous reports, autistic kids do have high levels of blood mercury. The reanalysis paper, Blood Levels of Mercury Are Related to Diagnosis of Autism: A Reanalysis of an Important Data Set, was itself immediately reanalyzed (epiwonk, epiwonk-2, Autism Street, leading to a response analysis by the Age of Autism blog, to name a few).

The quick and multiple responses to the DeSoto paper serve show how important the idea of autism as mercury poisoning is in some circles.

Shortly after the DeSoto paper came out, Mark Blaxill of SafeMinds (a very vocal proponent of the mercury hypothesis) wrote at the Age of Autism blog:

This is an important and unexpected finding. It supports one of the central hypotheses at the heart of the autism-mercury controversy and suggests that the excretion deficit in autistic children might persist longer than anyone had guessed

Mr. Blaxill has also used the DeSoto paper in his congressional briefing to support the idea that “Autistic children metabolize mercury differently”. Beyond the question of whether DeSoto is an accurate analysis of the data, this assertion by Mr. Blaxill is clearly not what the DeSoto paper showed.

That said, Mr. Blaxill’s remarks show how the DeSoto paper was obviously a major milestone in the attempt to legitimize the mercury hypothesis.

This struck me as odd at the time, as the prevailing wisdom was (and remained) that blood levels of mercury were not a good metric. Check any autism-biomed discussion and you will find loads of discussions about all sorts of odd tests for mercury: chelation challenge tests, urinary porphyrin tests, hair tests…pretty much everything except blood tests. The reason is simple, and sad. Autistic kids aren’t suffering from mercury poisoning, and blood tests show it.

The recent MIND Institute paper clearly refutes the DeSoto analysis paper. The MIND study is larger and uses a cohort of kids of similar ages (DeSoto uses a broad age range) and, very importantly, the MIND study controls for mercury exposure from diet and other sources. These are factors missing in the data analyzed by DeSoto. This puts the alternative medical autism community into a bit of a quandary. The MIND Institute and the lead author (Dr. Hertz-Picciotto) are well respected in those quarters as they generally support the idea of a real rise in autism incidence and the idea that vaccine-causation should be researched. And, yet, the MIND study would speak against autism as mercury poisoning.

One thing about waiting to do a longer blog post is that I can see what others have said. For example, the comments over at the Age of Autism blog were predictable in suggesting that blood levels are not an accurate metric. Here are a cpouple of examples:

This study on children’s BLOOD mercury levels does not take into account the fact that the mercury (and aluminum) is stored in tissues and organs including especially the BRAIN. The body protects itself from heavy metals by encapsulating this in fat cells especially, and in an infant or child, the largest concentration of fat is in the brain. The vast majority of the mercury (and/or aluminum) is NOT IN THE BLOOD.

and

Blood levels are always inaccurate. Best to get urine after chelation, then you see the difference. Even kids with autism, after many rounds still don’t dump the stuff. And by the way, selenium soils is a key thing Maria…because the lowest selenium soil states have the highest autism. And visa versa. Lest we forget, many other metals also cause problems…did they look at those or bother?

And let’s get this straight…mercury not only causes autism, it causes behavioral problems, immune problems, metabolic problems….just looking at one aspect of the outcome is not a study.

Another desperate attempt to downplay mercury, not going to work guys…

I bring this up because similar observations were not made when the DeSoto paper was being discussed. Yes, even though the prevailing wisdom is that blood levels of mercury are not the “correct” metric, none of the people at blogs like the Age of Autism spoke up.

Back to the present, I note also the SafeMinds response to the MIND Institute study, which includes this line:

Research has demonstrated that certain subgroups, including children with autism, show potentially higher susceptibility to environmental stressors like mercury (James, 2009; Ralston, 2008; Sajdel-Sulkowska, 2009). Some recent studies have indicated increased mercury in tissues and organs of people with autism relative to controls (Adams, 2007; Sajdel-Sulkowska, 2009; Desoto, 2007; Desoto, 2008). Given equivalent exposures, as indicated by the CHARGE study, SafeMinds feels that it is imperative that research is conducted that determines not only exposure, but differences in how individuals with autism handle mercury exposures and its impact to the body’s tissues and organ systems.

Yes, that is the same DeSoto paper they are citing. I am a bit of a loss as to what SafeMinds is trying to say. They cite DeSoto, an analysis of a study which did not control for exposure and because of this is a paper which to this observer is clearly refuted by the MIND Institute study. Without controling for exposure, DeSoto can’t be claimed to show increased mercury in tissues.

Sound confusing? That’s because it is. Mercury in the blood is important to the biomed community. At least it is if it is a paper (like DeSoto) that supports the idea that mercury causes autism. Mercury in the blood is not important if the paper (like the one from the MIND Institute) doesn’t support the link. The DeSoto paper is important because it supports the hypothesis, even when SafeMinds are using the MIND study which refutes DeSoto…

Yes, all this is confusing. There isn’t a consistent view on whether blood levels are important, except to say that data which supports the mercury hypothesis is good, data which doesn’t is bad.

If this is so confusing, what can we say? We can say that no, mercury in the blood is not a good metric for anything having to do with autism. Not because blood levels aren’t a good measure, but because autism is not a novel form of mercury poisoning.

The war on Tom Insel and the IACC

23 Oct

Tom Insel is director of the National Institute of Mental Health (NIMH) but he is better known to readers of this blog as the chair of the Interagency Autism Coordinating Committee. If you read other autism blogs, he’s probably very well known to you, as he has been the target of a concerted attack from the vaccines-cause-autism groups for a few months now. They even got the publicist, David Kirby, to take their battle to the public in a CBS interview.

Let me take a moment to make a side point. The vaccines-cause-autism groups (SafeMinds, Generation Rescue, the National Autism Association, Talk About Curing Autism (TACA)…I’m probably missing one or two), are basically a single consortium as evidenced by their single blog and their shared membership. I don’t see the need to treat them as separate entities. I really don’t see that they should be given multiple representations on the IACC.

I’ve been watching the IACC pretty closely for some time. I’ve also been watching the vaccines-cause-autism consortium. I’ve been watching the consortium build pressure against Dr. Insel.

One thing I’ve noticed: this level of pressure directed at Dr. Insel wasn’t always the case. Less than a year ago, Dr. Insel was not their target.

Take a look at one of the classic pieces of IACC intimidation: a piece called “Grinkers Stinker“. This is dated January, 2008. It was timed to coincide with a 4-day workshop that was the kick-off for the Strategic Plan process.

“Grinker’s Stinker” was a piece about the Dr. Joyce Chung, the former IACC coordinator. She is the wife of Prof. Roy Richard Grinker, anthropologist and author of the book Unstrange Minds. Dr. Grinker has publicly stated that he accepts the scientific consensus that vaccines did not cause an epidemic of autism. Dr. Chung has made no public statements (at least that I can find), but the lack of actual information about her or her opinions didn’t stop a blog post decrying her position on the IACC. From the blog post:

Does Joyce Chung agree with her husband? Did they ask her this question before she took the job?

Oddly, the last comment to that blog piece, by Generation Rescue’s “DC Liason” Kelli Ann Davis, starts with the question, “Can I suggest that we try and put an end to all the mudslinging?”

History has proven that, no, the Age of Autism can’t put an end to the mudslinging. Unfortunate, that.

Take a look at the blog post. There is no mention of Dr. Insel. No one decrying his “lack of leadership”, no one claiming “collusion” or “malfeasance”. None of the mudslinging terms currently used against members of the IACC, especially Dr. Insel. In fact, the first mention of Dr. Insel is in the comment by Ms. Davis. In her comment Ms. Davis suggests that Dr. Insel will be watching out for conflicts of interest.

Times certainly have changed. The Age of Autism likes to demonize those it disagrees with, and Dr. Insel certainly has been a recent target.

What happened?

Dr. Insel (a) had the IACC reconsider an initiative to call for a vaccine-autism study to be included in the Strategic Plan and (b) spoke before a congressional hearing about why vaccine/autism studies are not a high priority.

Not surprising to many of the readers here, I am sure, the vaccines-cause-autism consortium have a single issue (vaccines). As long as Dr. Insel’s position on vaccine/autism research, there was hope for the consortium and they left him alone. Once his current opinion formed and was public, he was public enemy number one. Yes, Dr. Paul Offit (vaccinologist and outspoken critic of the notion that vaccines cause autism) has been superseded.

Recently, Dan Olmsted (owner of the Age of Autism website) called for Dr. Insel to resign. Again, it boils down to the single issue: vaccines.

So, here we are. The vaccines-cause-autism consortium has declared war on Tom Insel for opposing their single-item agenda. If you think “war” is too strong a word, take it up with Mr. Olmsted. In referring to the recent incident where notes from an IACC member were made public:

…notes dropped on the floor (see the notes here) at the IACC, recovered by friendly forces and reported on our blog…

Yes, the Age of Autism people are “friendly forces”.

Here’s my perspective on Dr. Insel, for whatever it may be worth. He is the chair of the IACC. In my opinion, his role is to run the meetings and manage the staff. He should be getting good people in to serve on the IACC and the subcommittees and good people to consult on the topics that are discussed. Basically, his role is that of a facilitator–get good people together with the tools they need to do their job. He needs to be knowledgeable enough on the subject (autism) to do this.

You know what? Given the fact that his full time job is director of the NIMH, he’s actually done a pretty good job.

Is there room for improvement? Heck yeah. How about putting a greater emphasis on research into the needs of autistic adults? The majority of autistics are adults. And yet only 5% of the funding is being applied to this critical area.

But, of course, the squeaky wheels (the vaccines-cause-autism consortium in this case) get the grease. The squeaky wheels have been calling for research into environmental causes of autism. Tens of millions of dollars are being focused on this. Why are the squeaky wheels unhappy? Because the squeaky wheels didn’t really mean “environmental causes”. That was only a code word for vaccines.

This level of tension is not just sad. It is detrimental to the progress of the IACC. There are a lot of autistics, parents, professionals and organizations who are interested in working with the IACC. Why spend any more effort on the groups that have declared war?

(note, I made a number of changes in this piece shortly after publishing it)

It’s time to stop the intimidation tactics towards the IACC

21 Oct

The Interagency Autism Coordinating Committee (IACC) is group of government employees and autism community stakeholders who are chartered with coordinating research activities within the U.S. government’s Department of Health and Human Services (HHS).

The official charter is:

The Interagency Autism Coordinating Committee (Committee) shall coordinate all efforts within the Department of Health and Human Services concerning autism spectrum disorder to combat autism through research, screening, intervention and education. The Committee’s primary mission is to facilitate the efficient and effective exchange of information on autism activities among the member agencies, and to coordinate autism-related programs and initiatives. The Committee will serve as a forum and assist in increasing public understanding of the member agencies’ activities, programs, policies, and research, and in bringing important matters of interest forward for discussion.

The IACC predates the Combating Autism Act (CAA), but has taken on the role of coodination and strategic planning for the CAA.

This is no small effort. We are talking about a group that helps to set the goals for about $100M in research funding a year. The U.S. government’s research efforts into autism are the largest in the world. The research portfolio covers causation through supports for autistic adults.

I don’t think I will surprise anyone when I say that the autism communities, like any communities, have many different ideas of what focus should be placed on autism research. I would also expect little argument that the loudest voice in that discussion comes from the groups promoting the notion that vaccines caused an autism epidemic. Most of these groups are sponsors of the Age of Autism blog.

These groups lobbied hard to get vaccine research included in the Combating Autism Act. The failed. They did manage to get some senators to mention vaccines in the “colloquy“. These were statements made by senators when the Act was passed. Basically, these are speeches, not law. These statements were also not very strong. Consider this statement by Senator Enzi:

However, I want to be clear that, for the purposes of biomedical research, no research avenue should be eliminated, including biomedical research examining potential links between vaccines, vaccine components, and autism spectrum disorder. Thus, I hope that the National Institutes of Health will consider broad research avenues into this critical area, within the Autism Centers of Excellence as well as the Centers of Excellence for Environmental Health and Autism. No stone should remain unturned in trying to learn more about this baffling disorder, especially given how little we know.

The strongest argument that can be made is that three senators made a nonbinding statement that the National Institutes of Health should “consider” research on vaccines.

The Combating Autism Act was signed over three years ago. Since that time it has become even more clear that vaccines are not a primary cause of autism. The two major theories that the MMR vaccine or that Thimerosal cause autism have been shown to have very little scientific basis. Both were discussed at length in the Autism Omnibus Proceedings. The MMR causation theory has already been rejected as “not even close” and upheld by three separate appellate judges. The thimerosal theory has not been decided as yet, but the science was no better than that used for MMR. I expect that the Thimerosal theory will suffer the same fate as the MMR theory.

The number of people applying to the “vaccine court” for compensation for autism peaked six years ago. 2,437 families petitioned the Court for hearings alleging autism as a vaccine injury in 2003. In 2008 that number shrank to 253. The vaccines-cause-autism theory is clearly losing ground even within the autism community.

That doesn’t mean that the vaccines-cause-autism organizations are giving up. Quite the opposite. They are ratcheting up the pressure, focusing on individuals.

I actually find it hard to consider the vaccine/autism groups to be separate entities. These groups are SafeMinds, Talk About Curing Autism (TACA), the Autism Research Institute (ARI), Generation Rescue, and The National Autism Association (NAA). They do vary in their approaches to some topics. For example, TACA and Generation Rescue put more resources into direct contact with families than, say, SafeMinds. But, when it comes to lobbying about vaccines, they are pretty much a single organization, sharing a significant amount of key personnel.

These organizations are represented on the IACC by Lyn Redwood of SafeMinds. The grassroots activist efforts of the organizations is coordinated through their blog, the Age of Autism. It is a particularly clever and effective construct: the advocacy organizations can claim to be separate from the particularly nasty rhetoric of their own blog. As a separate entity, the finances of the Age of Autism blog will not be made public.

That all said, the Age of Autism should be considered the voice of these organizations and the actions coordinated on that blog are the actions of its parent organizations.

I can understand why groups such as SafeMinds or Generation Rescue would want to be able to claim some distance from the Age of Autism (AoA). AoA is used to coordinate serious intimidation efforts.

The recent departure of Dr. Story Landis from the IACC was engineered by AoA. They found notes made during an IACC meeting and planned a surprise attack to coincide with an IACC meeting. As an ironic twist, AoA got someone sympathetic to their cause to resign the IACC.

AoA has also targeted IACC member Yvette M. Janvier, M.D., twisting her words “the idea that autistic kids are sick offends me!” into “I am offended by sick autistic kids”.

AoA launched an attack on IACC coordinator Joyce Chung. This coincided with a week long IACC meeting to iron out the Strategic Plan. Her “crime”? She is married to Richard Grinker, author of Unstrange Minds. Dr. Grinker is public in his belief that there has not been an epidemic of vaccine-induced autism, a belief held by the vast majority of the autism research community. What does Dr. Chung have to say publicly on the subject? Nothing as far as I can see. What actions did she take that warranted an attack? None.

The good people at AoA have attempted legal intimidation as well. They got a Congressional Oversight Committee to investigate the IACC. When that didn’t pan out, they sought “legal advice” on alleged FACA violations. No word on what, if anything, became of that effort either. The Age of Autism isn’t shy about touting their attacks. It would seem safe to assume this one failed.

AoA has recently set their sights on the IACC’s chair, Dr. Tom Insel. I am sure this came as no surprise to Dr. Insel. Earlier this year he called for a re-vote on a proposal to add a vaccine study to the IACC’s Strategic Plan, and later made public statements in a congressional hearing that there wasn’t enough data to warrant a vaccine-autism study.

Other than being bold enough to discuss the view held by the vast majority of autism researchers, what is Dr. Insel’s greatest crime? His brother invented a vaccine. Yes, Dr. Richard Insel helped develop a vaccine for Haemophilus influenza B (Hib). This vaccine has been quite effective in reducing Hib infections. But, any contact with vaccine research or company is considered a fatal conflict of interest to the bloggers at the Age of Autism.

I’m sure that there is more going on behind the scenes.

If this were all to the story, it would be sad but uninteresting. Unfortunately, there is fallout from all of this intimidation. I already know that good researchers have avoided autism as a subject in order to avoid the groups represented by the Age of Autism. I suspect that good people are avoiding participating in the IACC meetings as well. But, the most direct fallout is that the IACC members are unable to speak their minds on the subject of vaccines. Beyond vaccines, they have to live in fear of any possible infraction of the rules or any statement that could be misinterpreted will be used against them. A prime example was given above where “the idea that autistic kids are sick offends me!” was warped into “I am offended by sick autistic kids”.

If this were some minor, make-work bureaucratic committee with no real impact I wouldn’t care. But this is the group that sets the plan for the largest autism research in the world. Not only is this sort of intimidation a crime in general, it is hurting my kid’s chances at a better life.

It is time for the intimidation to stop. The Age of Autism bloggers should learn a lesson from their recent, childish attack. Acting out without thinking can hurt even them. This event is being noticed. Both the journals Nature and Science have blog posts about this recent debacle. The Simons Foundation interviewed the director of the NIH on the subject.

I’ll say it again: it is time for the intimidation to stop.

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