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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.

Paul Offit honored by American Academy of Pediatrics

24 Oct

Paul Offit has been honored by the American Academy of Pediatrics for Outstanding Service.

Here is the press release:

WASHINGTON, DC – The American Academy of Pediatrics (AAP) will present Paul Offit, MD, FAAP, with the President’s Certificate for Outstanding Service at the National Conference and Exhibition of the AAP. The award recognizes an individual’s outstanding service and long-term, personal dedication to the mission of the AAP and to the health, safety and well-being of children. Dr. Offit is a pediatrician, chief of infectious diseases and the director of the vaccine education center at the Children’s Hospital of Philadelphia. The AAP is honoring Dr. Offit in recognition of his ongoing commitment to promote immunization.

Dr. Offit is a co-inventor of a vaccine against rotavirus. He is also the author of the book, Autism’s False Prophets.

Hat tip to “I Speak of Dreams“

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)

Gentle autistic man murdered

22 Oct

If someone says, “there’s a murder in the news and an autistic is involved”, what is the image that comes to mind for most people?

This story from the Sacramento (California) Bee: Slain student was “gentle, sometimes a target,” dad says..

There are some autistics who are non aggressive to the point of being unable to defend themselves. It sounds like Scott Gregory Hawkins might fall into that category. He was beaten to death with a baseball bat by his roommate.

“I would say that he was just very gentle, sweet, unassuming, kind of sometimes a little goofy, and he was kind of a nerdy kid who really loved his studies,” his father said.

Scott loved history and wanted to be an educator.

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.

The myth that the IACC doesn’t support environmental causation research

21 Oct

Say a lie often enough and people will believe you. That is the strategy over at the Age of Autism blog, and for the organizations that sponsor it.

One of their favorite lies is the idea that the IACC (Interagency Autism Coordinating Committee) doesn’t support research into environmental causes of autism.

We are lucky that the IACC has published their research portfolio, showing not only the budgeted amounts, but the amounts committed so far. Below is page 11 from this document, for “Question 3. What Caused This to Happen and Can This Be Prevented?”

Question 3. What Caused This to Happen and Can This Be Prevented?
3.1 Initiate studies on at least five environmental factors identified in the recommendations from the 2007 IOM report “Autism and the Environment: Challenges and Opportunities for Research” as potential causes of ASD by 2010. IACC Recommended Budget: $23,600,000 over 2 years. 2008 research funding $7,600,673

3.2 Coordinate and implement the inclusion of approximately 20,000 subjects for genome-wide association studies, as well as a sample of 1,200 for sequencing studies to examine more than 50 candidate genes by 2011. IACC Recommended Budget: $43,700,000 over 4 years. 2008 research funding $4,065,392

3.3 Within the highest priority categories of exposures for ASD, identify and standardize at least three measures for identifying markers of environmental exposure in biospecimens by 2011. IACC Recommended Budget: $3,500,000 over 3 years. 2008 research funding $713,227

3.4 Initiate efforts to expand existing large case-control and other studies to enhance capabilities for targeted gene – environment research by 2011. IACC Recommended Budget: $27,800,000 over 5 years. 2008 research funding $4,603,867

3.5 Enhance existing case-control studies to enroll broad ethnically diverse populations affected by ASD by 2011. IACC Recommended Budget: $3,300,000 over 5 years. 2008 research funding $184,628

3.6 Determine the effect of at least five environmental factors on the risk for subtypes of ASD in the pre- and early postnatal period of development by 2015. IACC Recommended Budget: $25,100,000 over 7 years. 2008 research funding $1,803,628

3.7 Conduct a multi-site study of the subsequent pregnancies of 1,000 women with a child with ASD to assess the impact of environmental factors in a period most relevant to the progression of ASD by 2014. IACC Recommended Budget: $11,100,000 over 5 years. 2008 research funding $2,742,999

3.8 Identify genetic risk factors in at least 50% of people with ASD by 2014. IACC Recommended Budget: $33,900,000 over 6 years. 2008 research funding $36,966,711

3.9 Support ancillary studies within one or more large-scale, population-based surveillance and epidemiological studies, including U.S. populations, to collect nested, case-control data on environmental factors during preconception, and during prenatal and early postnatal development, as well as genetic data, that could be pooled (as needed), to analyze targets for potential gene/environment interactions by 2015. IACC Recommended Budget: $44,400,000 over 5 years. 2008 research funding $17,297,788

Adding those topics funding environmental causation and gene-environment causation, I get a budget of $135,500,000 for six topics.

Summing the gene only projects (3.2 and 3.8) I get $77,600,000, for two projects.

Yes, about 60% of the causation budget is on environment and gene-environment mechanisms.

Why isn’t the Age of Autism blog writing about this? Why aren’t Generation Rescue, SafeMinds, the National Autism Association…all of the “environmental causation” organizations happy with this level of funding?

Why isn’t Lyn Redwood, IACC member and SafeMinds co-founder claiming a huge victory? How about Mark Blaixill, who is on an IACC subcommittee, and is also a member of SafeMinds? Why isn’t he discussing this?

The reason is obvious, to me at least. There isn’t a specific project calling for research into vaccines.

Guess what, there isn’t anything ruling out vaccine research either.

If the vaccines-cause-autism groups want to call for transparency in the process, why don’t they practice it? Why are they hiding information from the autism community? Do they actually care about environmental causation aside from vaccines? It doesn’t seem like it to this observer.

NIH director on the lack of trust within the autism community

20 Oct

This video is taken from the Simons Foundation blog. The Simons Foundation was able to get NIH Director Francis Collins to make a statement about the resignation of Story Landis from theIACC .

I am impatient for answers. If there were any good evidence that vaccines were causal in autism, I’d be pushing for research on that subject.

As Dr. Collins notes, we should not assume that there is “just one path” that will get us to the truth. I would assert that it is precisely the vaccine/autism organizations who can’t leave behind their one path. We need to move forward, not spin our wheels in the same place that hasn’t proven fruitful for the past 10 years. It’s time to move beyond vaccines.

http://vimeo.com/moogaloop.swf?clip_id=7156587&server=vimeo.com&show_title=1&show_byline=0&show_portrait=0&color=6854a1&fullscreen=1

Neurodiverse intimidation

20 Oct

A recent comment on this blog used this video as an example of how the Neurodiverse community uses “intimidation”. Take a look for yourself:

video below

I thank Mr. Crosby for bringing this video to my attention. It is awesome. I also appreciate the opportunity to see what people mean when they make claims that the neurodiverse community. What others label “intimidation” is to me–and I bet to the almost everyone who would watch this video–as a very respectful presentation by a well spoken person.

Wired Magazine: an epidemic of fear

20 Oct

Amy Wallace has written her first piece for Wired Magazine, and it is sure to draw a lot of attention. The article, An Epidemic of Fear: How Panicked Parents Skipping Shots Endangers Us All, covers a lot of ground. The main focus is basically an extended interview with Dr. Paul Offit.

Just in case there are any readers who haven’t heard of Dr. Offit, he is an infectious disease specialist, co-inventor of a rotavirus vaccine, and outspoken critic of the idea that vaccines caused an autism epidemic. Or, as Ms. Wallace writes in her introduction, “To hear his enemies talk, you might think Paul Offit is the most hated man in America.”

Orac, over at Respectful Insolence, has already blogged the article.

The piece points out the very real dangers of vaccine preventable diseases. It also discusses briefly some of the luminaries of the anti-vaccine movement: people like Jenny McCarthy, Robert F. Kennedy Jr and his deeply flawed article in Rolling Stone, Barbara Loe Fisher…unfortunately it is a long list.

Ms. Wallace also discusses autism’s thriving alternative medical community. Search for “Enter the snake oil salesmen” if you want to find that section quickly. Ms. Wallace attended an Autism One conference and reports on her findings.

In discussing how the membership in the CDC’s Advisory Committee on Immunization Practices has changed from mostly medical and vaccine professionals to mostly epidemiologists and public health professionals, Ms. Wallace writes:

That’s not by accident. According to science journalist Michael Specter, author of the new book Denialism: How Irrational Thinking Hinders Scientific Progress, Harms the Planet and Threatens Our Lives, the controversy surrounding vaccine safety has made lack of expertise a requirement when choosing members of prominent advisory panels on the issue. “It’s shocking,” Specter says. “We live in a country where it’s actually a detriment to be an expert about something.” When expertise is diminished to such an extent, irrationality and fear can run amok.

Dr. Offit makes a very good point in the article about risk:

“The choice not to get a vaccine is not a choice to take no risk,” he says. “It’s just a choice to take a different risk, and we need to be better about saying, ‘Here’s what that different risk looks like.’ Dying of Hib meningitis is a horrible, ugly way to die.”

Unfortunately, we now have highly visible doctors like “Doctor Bob” Sears who recommend that people who don’t vaccinate “hide in the herd” so to speak. He tells people in his book that if they don’t vaccinate they should keep quiet about it so that vaccination rates stay high and their family remains protected by the rest of us who do vaccinate.

While morally reprehensible, Dr. Bob’s advice is accurate. From the Wired story:

The frightening implications of this kind of anecdote were illustrated by a 2002 study published in The Journal of Infectious Diseases. Looking at 3,292 cases of measles in the Netherlands, the study found that the risk of contracting the disease was lower if you were completely unvaccinated and living in a highly vaccinated community than if you were completely vaccinated and living in a relatively unvaccinated community. Why? Because vaccines don’t always take. What does that mean? You can’t minimize your individual risk unless your herd, your friends and neighbors, also buy in.

Wired makes special note of the organizations which are particularly vocal in the “anti-vaccine” message:

Anti-Vaccine Websites

Though many of these organizations would not define themselves as such, these are the most active organizations and websites in the current battle against vaccines:

National Vaccine Information Center
Autism One
Generation Rescue
SafeMinds
Treating Autism
National Autism Association
Autism File

As Orac points out, the Age of Autism blog would fit in well with the above list.

I wish I could bet on the criticisms that are headed towards Dr. Offit after this article. I’m fairly confident I can pick out the paragraphs that will be focused upon.

If you read the article, you will understand this: Bonnie, thanks for loaning us your husband. He is a true friend to children.

Federal judge stops IHSS cuts in California

20 Oct

California is facing severe budget shortfalls. High on the chopping block for cost-cutting are services to the disabled.

One form of support is IHSS (In Home Supportive Services).

The IHSS Program will help pay for services provided to you so that you can remain safely in your own home. To be eligible, you must be over 65 years of age, or disabled, or blind. Disabled children are also eligible for IHSS. IHSS is considered an alternative to out-of-home care, such as nursing homes or board and care facilities.

Here is an update from CDCAN, the California Disability Community Action Network.

OAKLAND, CALIF (CDCAN) [Updated 10/19/09 12:10 PM (Pacific Time)- Federal District Court Judge Claudia Wilken in Oakland blocked the state from implementing cuts to eligibility and services under the In-Home Supportive Services (IHSS) program,
granting a preliminary injunction requested by attorneys representing persons who receive In-Home Supportive Services, saying from the bench that substantial harm, damage and injury which would result if the cuts went forward.

The judge’s order represented a sweeping major victory for advocates for persons with Disabilities, mental health needs, the blind, low income seniors, their families, IHSS Workers and advocacy groups.

The judge’s order blocks the State from implementing major cuts to eligibility based on a person’s “functional index score” and reductions in domestic and related services based on a person’s “functional index rankings”.

Judge Wilken said that the State’s use of the “functional index rankings” and “functional index scores” were clearly not based on need, that essential services could be withdrawn arbitrarily, and that “people could lose something irreplaceable – the ability to remain safely in their homes.”

The judge issued her injunction that stopped the cuts from going forward as scheduled Because she believed that the plaintiffs – the persons with disabilities and others who filed the lawsuit were likely to win in a the trial that the cuts to services under IHSS using the “functional index score” and “functional index rankings” as the basis to make cuts to eligibility and domestic and related services violated federal law. The judge denied a request (motion) from the State to “stay” (delay effect date of her injunction) until her ruling can be appealed (“staying” her injunction would have allowed the cuts to go forward until the case could be heard in the US 9th Circuit Court of Appeals)

The judge issued her ruling from the bench from a two hour hearing this morning.

More details later today.

In other words–the cuts to IHSS are on hold during the state’s appeal. The alternative, make the cuts while the state appeals, would have surely meant that some people would have lost their ability to stay “in home”.

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