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Recovery Act Funds Support Strategic Goals for Autism Research

9 Nov

The National Institutes of Health were given a large amount of money as a part of the economic stimulus package.

I just got the email below from the NIH autism listserve and thought some people reading here would be interested:

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The National Institutes of Health (NIH) awarded more than 50 autism research grants, totaling more than $65 million, which will be supported with American Recovery and Reinvestment Act (Recovery Act) funds. These grants are the result of the largest funding opportunity for research on autism spectrum disorders (ASD) to date, announced in March 2009.

Awards were based on the quality of the proposed study and how well it addressed short-term research objectives detailed in the Interagency Autism Coordinating Committee’s (IACC’s) Strategic Plan for Autism Spectrum Disorder Research.

“These studies currently hold the best promise of revealing what causes autism, how it might be prevented, what treatments are effective, and how service needs change across the lifespan-questions noted in the IACC strategic plan as critically important to improving the lives of people with ASD and their families. The Recovery Act funding makes it possible to do the type of innovative research necessary to find these answers more quickly,” said Thomas R. Insel, M.D., director of the National Institute of Mental Health (NIMH), part of NIH, and IACC chair.

Examples of awarded studies include:

· Catherine Lord, Ph.D., of the University of Michigan, and Somer Bishop, Ph.D., of the Children’s Hospital Medical Center in Cincinnati, will lead a two-site study to adapt the Autism Diagnostic Interview-Revised-the current gold standard for diagnosing autism-into a brief parent interview that can be done over the telephone. This new tool will help reduce research screening costs and help researchers to quickly identify potential participants for ASD studies.

· David Amaral, Ph.D., Sally Rogers, Ph.D., and Judy Van de Water, Ph.D., all of the University of California Davis, aim to expand on a previous pilot program to identify different subtypes of autism based on behavioral, biochemical, and brain imaging markers. This research may help improve future efforts to study, diagnose, and treat children based on their subtype of autism.

· Joseph Buxbaum, Ph.D., of Mount Sinai School of Medicine; Richard Gibbs, Ph.D., of Baylor College of Medicine; Gerard Schellenberg, Ph.D., of the University of Pennsylvania; James Sutcliffe, Ph.D., of Vanderbilt University; and Mark Daly, Ph.D., of the Broad Institute at MIT; will lead a collaborative network of research labs and centers using cutting-edge technologies to discover specific genes underlying autism. Their research will provide insight into the biology of autism and expose genes and pathways that constitute high priority targets for the development of novel treatments.

· Sally Rogers, Ph.D., and Laurie Vismara, Ph.D., both of the University of California Davis, aim to develop and test a parent-delivered preventive intervention for infants 6-11 months old who are at high risk of developing ASD because they have an older sibling with the disorder. The intervention will focus on reducing atypical behaviors and developmental delays to help lessen or prevent the disabling symptoms associated with ASD.

· Olga Solomon, Ph.D., of the University of Southern California, will lead a study on how race, gender, socio-economic status, family culture, and communication during clinical encounters affect the health care experiences of African American children with ASD in an urban setting. Such research may help reduce the existing disparities in ASD diagnosis and service delivery for this and possibly other underserved populations.

· Ruth Carper, Ph.D., of the University of California San Diego, seeks to fill a gap in scientific understanding of the effects of ASD in later life. By exploring age-related changes in cognition and possible protective factors, as well as the changing service needs and quality of life concerns among adults and older people with ASD, this project may reveal targets for intervention and inform public policy.

· Rob McConnell, M.D., of the University of Southern California, and colleagues will explore possible links between traffic-related air pollution and ASD risk. They will also examine genes that help process pollutants in the body among children with and without autism to determine how these genes may affect ASD risk.

· Steven Camarata, Ph.D., and Mark Thomas Wallace, Ph.D., both of Vanderbilt University, will evaluate the effects of “sensory integration treatment” on communication and social skills in children with ASD. Based on desensitization techniques, this widely used but little studied treatment is believed to help reduce children’s resistance to outside stimuli and improve the integration of sensory information.

In addition to the contributions of direct findings from these studies, much of the data will also be available to other researchers through the National Database for Autism Research (NDAR). As a tool for the autism research community to exchange research related information, this use of NDAR is likely to advance the understanding of ASD heterogeneity to a far greater degree and at a more rapid pace than would be possible through any single project.

The grants will be administered by the five NIH Institutes that currently fund autism research: the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), the National Institute on Deafness and Other Communication Disorders (NIDCD), the National Institute of Environmental Health Sciences (NIEHS), and the National Institute of Neurological Disorders and Stroke (NINDS), with NIMH taking the lead on this effort and providing more than half of the total funds. This effort is included in the $5 billion in grant awards for biomedical research supported through the Recovery Act during FY 2009, as announced by President Obama during his visit to NIH on September 30, 2009.

H1N1 really does kill people

9 Nov

Its always a bit of a dilemma when writing an entry that doesn’t really touch on autism at all. But I have become convinced that the population beyond the autistic and autism community need to know that most of us within these communities do not support the know nothing anti-science, anti-medicine and most of all, anti-vaccine community that has a vocal minority place within our communities and that as such we owe it to our societies to vocally counter these idiots such as those at Age of Autism who spread lies and promote an age of ignorance.

I’ve heard it said by writers and readers of blogs like Age of Autism and sites like JABS that H1N1 is ‘no big deal’ and that the H1N1 vaccine is a dangerous and untested shot. Both of these things are untrue.

My partners youngest daughter (not autistic, although her eldest is) recently received an invitation to participate in the H1N1 vaccine testing which would involve three visits to the local hospital over a four week period. And over the 4 week period they would take two blood draws. This is for an ongoing safety and efficacy testing.

Swine flu is a big deal. In the UK there have been over 150 deaths since June 2009. Thats about 1 death per day.

In the US, the latest FluView weekly roundup notes 18 flu related child deaths of which 15 were due to H1N1. Fifteen in 7 days.

Next time someone says H1N1 is a ‘nothing’ issue, point them to these stats, behind which lie the dead bodies of real people.

Time Magazine picks up “I am Autism” protests

7 Nov

Time magazine has an article online today, ‘I Am Autism’: An Advocacy Video Sparks Protest. The article notes the protests staged in response to the I Am Autism video. (I have made my own position clear on the video Autism Speaks media campaign…I am autism, Why I don’t like “I am Autism”, I am autism video removed from Autism Speaks’ website…or is it?, The Autism Speaks bait and switch with I am Autism, and ASAN’s Letter in Response to Autism Speaks’ Exploitative Practices.)

Time starts out with the controversies in the autism communities:

Few medical conditions rival autism as a magnet for controversy. Practically everything about the disorder — its cause, its treatment, the way it is diagnosed, how it is studied — is subject to bitter dispute, sometimes to the point of death threats.

Time has comments from the Autistic Self Advocacy Network’s Ari Ne’eman.

Some autistic “self advocates” are furious over the tone of the video. “We don’t want to be portrayed as burdens or objects of fear and pity,” insists Ari Ne’eman, president of the Autistic Self-Advocacy Network, a 15-chapter group he built while attending college at the University of Maryland, Baltimore County. “Apparently, should my parents divorce, it’s all my fault,” says Ne’eman, who received a diagnosis of Asperger’s syndrome, a relatively mild form of autism, at age 12.

Also, they quote Peter Bell of Autism Speaks:

“I Am Autism,” which turns hopeful about halfway through its 3 minutes and 44 seconds, was created for a World Focus on Autism event that coincided with the opening of the U.N. General Assembly in September. “It was never intended to have a life beyond that event,” Bell said.

Bell admitted that Autism Speaks does not have any individuals with autism currently serving on its board. “We are looking at adding individuals with autism to various advisory committees,” he said. The group is also initiating a better outreach to adults with autism.

I would welcome (to put it mildly) Autism Speaks getting some autistic representation in their organization. I think “advisory committees” sounds a bit weaker than the sort of representation I’d want to see, but it is a start.

As an aside, can someone explain this part of the article to me?

He notes that other disability groups have moved away from using fear and pity in their media campaigns. (See the best and worst Super Bowl commercials of 2009.)

OK…I’ll grant you that Super Bowl Commercials are not big on Pity and Fear, but it just doesn’t seem to fit the story.

Time has linked to protest videos “I am socks” and “I am Autism Speaks”

Political abuse and the abuse of autism

5 Nov

“Political autism” has emerged again in a row within the European Union (EU). Despite taking Britain into the EEC (the forerunner of the EU) in 1973, the Conservatives have always been vulnerable to disputes between their pro-European wing and the euro-sceptics who are mistrustful of European federalism and keen to defend British independence. The Labour Party has comparable factions within its ranks.

Thus political leaders of both the main parties have always had to perform a tricky manoeuvre, demonstrating their European credentials to a business community that knows where its markets lie and appealing to an electorate, many of whom prefer to blame faceless European bureaucrats for all our ills. This has led to an inconsistent approach that causes exasperation amongst some of our European partners.

This came to a head again this week over the lack of commitment by the Conservative Party leadership to the European Union. According to the Guardian

Pierre Lellouche, France’s Europe minister, described as “pathetic” the Tories’ EU plans announced today, warning they would not succeed “for a minute”.

Giving vent to frustration across the EU, which has so far only been expressed in private, Lellouche – who said he was reflecting Nicolas Sarkozy’s “sadness and regret” – accused William Hague, the shadow foreign secretary, of a “bizarre autism” in their discussions.

He said: “They have one line and they just repeat one line. It is a very bizarre sense of autism.”

This is not the first time autism has been used as a term of abuse in politics. But the National Autistic Society launched an immediate complaint

Autism (including Asperger syndrome) is a serious, lifelong and disabling condition. Comments such as those attributed to Pierre Lellouche, France’s Europe Minister, in which he seemingly suggests the Conservative Party, and in particular, William Hague, demonstrate a bizarre sense of autism are therefore extremely unhelpful.
To use the terms ‘autism’ and ‘autistic’ in a derogatory or flippant manner can cause deep distress and hurt to people affected by the condition. The National Autistic Society (NAS) is keen to address this issue, in order that these terms are not used lightly, particularly by commentators or people in positions of power or influence.
Autism is much more common than most people think and affects over half a million people in the UK. To use the terms as a criticism, for dramatic effect or to try and gain political advantage only perpetuates the confusion and misunderstanding which people with autism have to cope with everyday. This is simply unacceptable and must stop.

Today’s Times ran with the story of Monsieur Lellouche’s apology.

France’s Europe Minister has expressed his deep regret at causing offence by calling the Conservative Party “autistic”, but also blamed a mis-translation for the furore today.

Pierre Lellouche said that he was voicing his real concern about the Tories’ Eurosceptic slide under David Cameron when he reproached the party for “a very bizarre sense of autism” in an interview with The Guardian.

He also called their hostility to the European Union “pathetic” and said that the party’s policies in the European Parliament had “castrated” them. Aside from the political row, the remarks were condemned by autism advocacy groups.

However, although the minister said today his remarks were “clumsy”, he claimed that the term, which is colloquially used in French to refer to a stubborn person who does not listen, is a common term of political abuse in France.

Leaving politics aside, this derogatory use of autism reflects some very primitive and harmful ideas that still hold sway in France. Two years ago I wrote about an abusive “treatment” known as “packing” that is still going on today

“A French treatment for autistic children with psychiatric problems which involves wrapping the patient in cold, wet sheets from head to foot is undergoing a clinical trial for the first time, which critics hope will see an end to the controversial practice.

The treatment, known as “packing”, involves wrapping a child in wet, refrigerated sheets in order to produce a feeling of bodily limitation and holding, before psychiatrically trained staff talk to the child about their feelings. Critics have called the procedure cruel, unproven and potentially dangerous, but its proponents say they have seen results.”

This cruel treatment has been condemned by advocates for neurodiversity and proponents of biomedical cures alike. I have made my feelings regarding Lorene Amet’s position on vaccines and biomedical treatments perfectly clear here and, more recently, here. But I agree with her that Packing is barbaric.

It is time that the French medical and educational systems came to grips with the reality of today’s autism. Placing autistic children in hospitals, under psychiatric surveillance, refusing their inclusion in proper educational systems, refusing their access to medical examination
and treatments, violating their human rights and dignity, and even worse still allowing interventions such as “packing” to be conducted in hospital settings is unhelpful and has to be stopped.

According to the Times French autism organizations have welcomed the NAS response and are equally condemnatory of the casual use of autism as a term of political abuse in France.

French autism groups said that the affair demonstrated how offensive was the current use of the term in French public discourse.

Patrick Sadoun, a member of the Sesame Autism Association, said: “The English are right to be shocked. I congratulate a country that reacts to this. I am horrified that French politicians, at the slightest occasion, call one another autistic.”

While autism is an acceptable term of abuse autistic people continue to be the victims of unacceptable physical and psychological abuse.

This post is also available on Action for Autism.

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Bye bye Aspergers?

4 Nov

The recent article in the New York Times concerning the possibility of the ‘vanishing’ of Aspergers Syndrome from the next version of the DSM (due in 2012) only asks two people (Temple Grandin and Ari Ne’eman) for their opinions. Nothing wrong with that as such but I’d like to hear what the AS community at large thinks.

Temple thinks that the AS community is too large and too vocal to simply disappear but I think she’s missing the point somewhat. The point is (in my opinion) neatly encapsulated by Ari. He points out that AS isn’t disappearing, its simply formally becoming ‘part’ of autism. Something the vast majority of the autism and autistic community have always known it is. To answer Temple directly, the AS community isn’t disappearing, its just finally taking its rightful place alongside the others in the autism community.

NB: this post first erroneously stated Temple Grandin had an AS diagnosis. This is now corrected.

Age of Autism: misquotes Story Landis…jumps to unsupported conclusion

2 Nov

When the Age of Autism reported on a note written by Story Landis, they added a word that dramatically colored what was said. I am left wondering why would AoA make such an clearly detectable misquote? Read on and you will see what I mean.

Take a look at the piece titled “Dr. Story Landis: Autism not a multi-symptom disease but a money making scheme?“. That whole “money making scheme” part is what got people riled up. But is it really supported by what was said?

Here’s a little screenshot of the Age of Autism blog post, if you don’t want to click through to their site:

Segment of post about Story Landis

Segment of post about Story Landis

I know this seems redundant, but here is what they quote Dr. Landis as saying:

“I wonder if Lyn Redwood is pushing autism as a multi-symptom disorder in order to feed into vaccine injury awards.”

Emphasis added by me.

Why add emphasis, you might ask? Because “awards” is not in what Dr. Landis wrote in that first line. Go ahead and check. Here’s the note, as downloaded from the of the Age of Autism blog.

“I wonder if Lyn Redwood is pushing autism as multisystem disorder to feed into vaccine injury?

It is the second line that mentions awards:

Would be a good justification for looking at vaccine injured kids who have gotten awards.

The insertion isn’t a simple mistake–it is made twice in the same blog post. Here is the second place the mistake was made:

How could Landis imply that families are “trying to make” autism into a total body disease in order “to feed into vaccine injury awards.”

Neither section in the “quotes” is accurate. “Trying to make” isn’t in what Dr. Landis wrote, and, as we have just seen, “feed into vaccine injury awards” isn’t either.

Without the word “awards” added the meaning that the Age of Autism blog post tries to convey, heck, the title of the blog post–that Dr. Landis was speculating that this was a “money making scheme”–is unsupported.

Let’s dive into this a bit deeper. David Kirby, blogger at the Age of Autism and at the Huffington post did a very strange thing. In his piece he gets the correct quote from the note, doesn’t mention the mistake made at the age of autism, but still pushes the Age of Autism interpretation:

To many parents, it seemed that Dr. Landis suspected Redwood of “pushing” the study of these multisystem problems merely to boost the number of autism cases filed in vaccine court (the Vaccine Injury Compensation Program), and to increase their chances for victory. Judging by the comments on Age of Autism, those parents were profoundly offended by the implications of that interpretation.

I’m curious as to how Mr. Kirby came to the conclusion that Dr. Landis’ note was “merely to boost the number of autism cases filed in vaccine court” and “to increase their chances for victory”. Dr. Landis didn’t mention the court, the chances of victory…or even “awards” in the context that would support Mr. Kirby’s interpretation.

I’d be curious as to whether Mr. Kirby pointed out the mistakes to the Age of Autism blogger in question.

A casual observer might find it odd how Mr. Kirby corrected the quote and yet persisted in pushing (yes, I’ll use the term pushing) the interpretation based on the misquote. The same casual observer would find it especially odd, since Mr. Kirby was the one to publicly disclose Dr. Landis’ explanation of her comment:

The other part of my note addressed the fact that it is important for autism researchers to study the children who have been most profoundly affected by their response to vaccines. That in no way mitigates my sincere apology to the families who interpreted my note to be uncaring and disrespectful.

“The other part of my note” being “Would be a good justification for looking at vaccine injured kids who have gotten awards.”

If you can look at the quote fresh, consider this interpretation–the first sentence, “I wonder if Lyn Redwood is pushing autism as multisystem disorder to feed into vaccine injury?” is discussing the if autism as a multisystem disorder would feed into the *idea* of autism as a vaccine injury. The assertion that her comment referred to vaccine injury “awards” is at best speculation and, at worst, a pretty clear misquote. I could speculate on the motives of the Age of Autism blogger, but haven’t we just seen how dangerous it is to speculate on motives with little information?

note: I made some small edits for clarity shortly after publishing this.

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.

Environment of Harmful Ideas

27 Oct

There used to be an email group on Yahoo devoted to the ideas in David Kirby’s book, Evidence of Harm? It was called Evidence of Harm or EOH for short. The book was ostensibly an exercise in investigative journalism.

  • Had there been a dramatic increase in autism amongst children born in the 1990s?
  • Was this increase caused by the increasing burden of mercury resulting from more thimerosal containing vaccines being added to the vaccine schedule at the beginning of the decade?
  • Was the government involved in a cover up?

Supporters of the vaccine-autism hypothesis saw the book as vindicating their beliefs. Hence the EOH group. But Kirby had always been clear about one thing. If mercury was a significant cause of autism then its removal from childhood vaccines should cause the numbers of new cases to fall. When the mercury was removed and numbers continued to rise Kirby wriggled a bit and then invoked environmental toxins as the reason. As a result the yahoo group Evidence of Harm changed its name to Environment of Harm. So now it was environmental mercury and not the mercury in vaccines. Well not any more. All versions of the Vaccine OS are a bit like Microsoft Windows . They have to be backward compatible with previous versions and are consequently laden with bloatware and very unstable. If you read the group today there are very few autism specific posts and lots of general anti-vaccine comments. This has slowed down the usual messages of sympathy for the perpetrator. But one member of EOH still managed this comment

But yesterday someone posted a link to yet another story of an autistic teen allegedly murdered by his mother. It is too early to speculate on the outcome and at least one newspaper has closed its online comment section on legal grounds until the trial is over. This has slowed down the usual messages of sympathy for the perpetrator. But one member of EOH still managed this comment. [edit]

To the group sadly I beleive we will see a rash of cases where , where they put there child to sleep. The same phenomena occured in england over a two year period , that force the UK gouv to increase funding Before they wake up , I suspect we will see many cases

Pierre

So murder is now “putting to sleep.” And heck it works! When parents went on a killing spree in the UK the government increased its spending on autism. I live in the UK I remember a few isolated cases of murder of autistics, no more, but sadly no less than what is happening in the rest of the world. I do not remember it leading to a growth in funding. What we have in the UK is a National Autistic Society that is committed to improving the lives of autistic people and their families. It operates across the lifespan. It does not demonize autism or cry wolf over vaccines and epidemics. Its campaigns section has enabled autistic people to talk directly to lawmakers and the law is changing. More services are on the way. But at no point were the deaths of autistic children exploited for campaign purposes. EOH is well named. If it can foster the sort of twisted thinking and disregard for the facts displayed by Pierre it truly is an environment of harm.

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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)

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