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A study comparing vaccinated and unvaccinated kids is coming…and SafeMinds is concerned

10 Jul

If a discussion of autism goes on long enough in the online parent community, the question of vaccines will almost certainly come up. (I’ll note that in real life it rarely, almost never, comes up). If the vaccine topic takes over the discussion, one is very likely to hear the call for a “vaxed/unvaxed” study: a comparison of health outcomes for kids who were vaccinated compared to kids who were not vaccinated.

There are at least three such studies in the works. Two are being funded by groups antagonistic to vaccines. The self-named “National Vaccine Information Center” is funding a project at George Mason University. Said study is, I believe, run by someone from NVIC. Generation Rescue is funding a project at Jackson State University, “Researching into the causes of autism”. In previous years, Generation Rescue was funding Jackson State for a project “vaccination status and health outcomes among homeschool children in the United States”, which is likely the same project just with a different name. Perhaps that’s the same study that the founder of “Focus Autism” is complaining about here. Either way, there are two, maybe more, vaccinated/unvaccinated studies that have been underway for a few years, funded by groups generally antagonistic towards vaccines.

As an aside–in online discussions, the people calling for a vaxed/unvaxed study are connected to Generation Rescue and NVIC. And yet they act like no one is doing such a study.

Back to the topic at hand: there is another vaccinated/unvaccinated study in the works. A large study. In discussions at an IACC meeting this year, Tom Insel responded to a statement about a vaccinated vs. unvaccinated study:

Dr. Insel: So I might add, we have just done that study looking at, in this case, tens of thousands of children in a large health care system — younger siblings, many of whom did not vaccinated. So we could, whether you like it or not, compare what the risks are, both the risk for autism and the risks for medical consequences for not being vaccinated versus being vaccinated in children who have presumably some genetic risk because they’re young sibs.

And those data are submitted for peer review. We should — maybe by July we’d be able to have that presented here. So I’ll be happy to, since we’ve funded that through, be happy to ask the authors to come and talk to us about the results.

That statement was in April. We just had the July IACC meeting but the results were not presented. The study is in the works, though. At the time Dr. Insel made that statement it struck me that this study was likely a part of a project by the Lewin Group. The Lewin Group presented at the IACC in early 2013. That project has not yet been published, but the results presented last year were very interesting, so I’ll take some time to go through those results here. Keep in mind that it’s possible the upcoming vaccinated/unvaccinated study is not by the Lewin Group.

The Lewin Group study population was large and included a large cohort of siblings of ASD kids:


When I read or hear “comorbid conditions” discussed by advocacy groups or parents, they are almost always those conditions which those groups feel are part of their “vaccines cause autism” picture. Gastrointestinal complaints–falsely linked by Andrew Wakefield to the MMR vaccine and autism. Mitochondrial/metabolic disorders, brought to prominence by a famous vaccine court case.

Yes, in this study metabolic dysfunction and gastronintestinal/nutritional conditions are about 4.5 times more common in ASD kids. About 20% of kids are in the gastronintestinal/nutritional conditions group (I wonder how that breaks down into GI and nutritional as separate groups). About 5% have metabolic conditions.

But what if I were to tell you that these are not the most common comorbid conditions in ASD children (and ASD adults are yet another story)? Not by a long shot.


About 70% of ASD kids have neurological disorders. About 70% have mental health conditions.

70%. 24 times higher than the general population for each condition.

You just don’t hear that from groups promoting vaccine causation. Groups like SafeMinds. Which brings us back to the vaccinated/unvaccinated study SafeMinds is concerned about. SafeMinds is preparing its readers for the vaccinated/unvaccinated study. Although they’ve been calling for this study for a long time, a fact they remind us of this fact in their article: The NIH is slated to release the results of a study on autism in vaccinated, partially vaccinated, and non-vaccinated children. Here’s what you need to know BEFORE it comes out.

SafeMinds begins their article comes with what I consider a rather ironic graphic:


Why is this ironic? SafeMinds relies upon poorly done research to support their arguments about vaccines, mercury and autism. For example, their non-peer reviewed Autism: A Novel Form of Mercury Poisoning is one of the papers that first made me question the purported vaccine/autism link. It was never very good and really should be discarded. As another example, if you go the SafeMinds web page
Correlation Between Increases in Autism Prevalence and Introduction of New Vaccines you will find this graph:


If you think that graph looks old, you’d be correct. It’s at least 10, if not 15 years old. It takes California Department of Developmental Services (CDDS) administrative data, pretends it’s actually autism prevalence, and graphs it against the mercury exposure from infant vaccines during the 1990’s and leads the reader to the idea that mercury exposure and autism are correlated and also related. But they aren’t correlated. That’s what happens when you use a 15 year old graph. California removed thimerosal from infant vaccines, even the flu shots, and also for vaccines for pregnant women. And what happened to the autism rate? It kept going up. Schechter and Grether published this in 2008 in Continuing increases in autism reported to California’s developmental services system: mercury in retrograde. In 2013, I showed that the increase was still going on. But SafeMinds is acting like the last decade didn’t happen. They tell us:

Autism prevalence increased rapidly in the late 1980s. The epidemic increased simultaneously in states across the United States, indicating that U.S. children were exposed to toxins in a consistent manner across the entire country. Due to the high adherence amongst the states to the CDC-recommended vaccination schedule, vaccines typically introduce a new exposure to children simultaneously throughout the country.

For people who actually looked at the CDDS data, we know the idea that autism was rising in the same way in various locations wasn’t true. The whole basis for a universal exposure causing the rise in identified autism was false. It’s one of those facts that made me question the vaccine hypothesis long ago. CDDS data even in 2000 showed autism rates varied wildly across the state of California and the increase was not the same from region to region within the state. Special Ed data (which has major limitations but is likely the data SafeMinds was using to make the above statement) showed large variation from state to state in the number of people getting services under the autism label. There is not and never was data to support the assertion SafeMinds makes above that the rates of autism increased simultaneously across the US.

All this is my long-winded way of saying, I find it more than ironic that SafeMinds wants to warn me about flawed research leading to bad conclusions.

So, let’s ask ourselves: why would SafeMinds be concerned enough about this new vaccinated/unvaccinated study? Well, siblings of autistic kids are (a) more likely to be unvaccinated and (b) more likely to be autistic, like 20 times more likely to be autistic (here and here)

The Lewin group reported that younger siblings were less likely to be vaccinated:


In addtion, an unpublished study from 2011 compared vaccination status among ASD kids, their siblings and non-relatives. The authors found:

Instead, because siblings of children with autism were less likely to be vaccinated according to the recommended schedule, both correlations and multiple regressions revealed a significant relationship between higher rates of vaccination and non-ASD behavioral outcomes.

Or, to put it simply, if you look at younger siblings, they get fewer vaccines than the general public and have a higher rate of autism. If correlation is causation, this would mean that vaccines prevent autism. Which, in at least one case, is true. Correlation is not causation, though. The new study will likely find that delaying or forgoing vaccines does not reduce autism risk. And that, in my view, would concern SafeMinds. Enough that they want people prepared in advance for what to them will be “bad” news.

By Matt Carey


Small groups band together to attempt to derail autism research funding

21 May

The law that sets in place the structure to steer autism research is up for renewal this year. Public Law 109-406 was introduced as The Combating Autism Act in 2006. It was reauthorized in 2011. And it is up for reauthorization again this year.

The law authorizes congress to appropriate $190,000,000 per year for autism research. But there are those who would like to scuttle this effort.

A number of groups have banded together to form the “Autism Policy Reform Coalition” to oppose continuing with the law funding autism research. From The Hill:

But an upstart group known as the Autism Policy Reform Coalition (APRC) is against the bill, arguing a drastic overhaul is needed in order for the money to be used effectively.

Who are the “Autism Policy Reform Coalition”? Readers to Left Brain/Right Brain will likely recognize many of these groups. And quickly put together the link that ties them together. In case you haven’t already guess it, yes, it’s vaccines. With science against them on vaccines, they are trying to legislate their views into existence.

Many of these groups are very small. Well funded, but small. None has a truly large membership. Most if not all do not allow for their leadership to be selected by a vote of membership. In fact, for most it seems one can not join them as a member, so it’s difficult to understand how they claim to represent a large part of the autism communities. As far as I know, none have an autistic in any prominent position, much less as a leader. And yet they purport to represent the “autism community”.

While many of these groups have toned down their public statements on vaccines over the years, they are still heavily invested in the idea. One marker of their support for the idea and their lack of scientific rigor is their support for Andrew Wakefield. Mr. Wakefield is the disgraced former academic surgeon who lost his medical license for unethical behavior and whose work attempting to link the MMR vaccine with autism was declared one of the great science frauds by Time Magazine. Much more, his work has been shown to be wrong (for one example, here).

Here are the groups in the Autism Policy Coalition:

Autism is Medical

Appears to be involved with Andrew Wakefield and the failed vaccine-causation notion. They are relatively new having just received 501(c)(3) status this year.

Defending Academic Integrity and Research Foundation
Again, a new group. They appear to be in place in large part to give financial assistance to Andrew Wakefield’s lawsuit against Brian Deer and the BMJ (replacing the “Doctor Wakefield Justice Fund”).

Here’s a recent Facebook page post

D.A.I.R. Foundation is committed to integrity in academics and research and exists to support scientists, doctors, and researchers working in the best interest of the public health whose efforts have come under intense and unfair scrutiny.

At the heart of this is Dr. Andy Wakefield whose work challenged special interest groups who responded with opposition and injustice. The Weston A Price Foundation awarded Dr. Wakefield the prestigious Integrity in Science award at the 2013 Wise Traditions Conference where he was also keynote speaker at the banquet. The DAIR Foundation Fundraiser seeks to provide legal support for Dr Wakefield and others in similar situations. We welcome your support. Tickets are tax deductible and attendees receive cocktails, dinner from a Paleo-style buffet, and a copy of Dr Wakefield’s latest book. Dr. Wakefield will speak to dinner guests about his research and his documentary movie.

To purchase tickets visit the DAIR Foundation website and click on the envelope icon next to the text Orlando Fundraiser Event

It is unclear how one would become a member, voting or not, of DAIR, nor how their leadership is selected.

Generation Rescue

Generation Rescue is currently run by Jenny McCarthy, who has been very vocal in her support of the vaccine/autism link. When Andrew Wakefield lost his job at Thoughtful House, Generation Rescue stepped up with a $100,000 donation to his “Strategic Autism Initiative”.

Generation Rescue’s founder wrote:

With less than a half-dozen full-time activists, annual budgets of six figures or less, and umpteen thousand courageous, undaunted, and selfless volunteer parents, our community, held together with duct tape and bailing wire, is in the early to middle stages of bringing the U.S. vaccine program to its knees.

I can not find from their website whether one can join as a member (voting or not) or how their leadership is selected.

National Autism Association

Recently ran into controversy over a fundraiser for their stance on vaccines. Supporter of Andrew Wakefield. They state on their website:

The National Autism Association believes:
Vaccinations can trigger or exacerbate autism in some, if not many, children, especially those who are genetically predisposed to immune, autoimmune or inflammatory conditions.

One can become a dues-paying member of the NAA. Their most recent IRS form 990 shows that they took in $4,775 in dues. That would be fewer than 150 dues paying members at their $35 tier.

I can not see how leadership is selected; whether the membership is allowed to vote in open elections.


One of the first organizations formed around the idea that vaccines cause autism. In specific, SafeMinds is focused on thimerosal in vaccines. The leadership has many of the same people over the past decade and I can’t see where one could join and whether if members are allowed, if they are allowed to vote for leadership.

Talk About Curing Autism

Another org that is strongly behind the vaccine-autism link.
(and here). It’s unclear if or how one would become a voting member. The leadership has been largely unchanged since founding.

The Thinking Mom’s Revolution

While I’m very fond of blogs, I don’t see them as organizations. Again, where does one join or vote for leadership? How does this blog count membership? Facebook likes?

I believe every one of the above groups considers Andrew Wakefield to be a hero, ignoring his proved ethical lapses (he was stripped of his medical license and the fact that his ideas on vaccines and autism have been shown to be wrong (e.g. Lack of Association between Measles Virus Vaccine and Autism with Enteropathy: A Case-Control Study to select one of many)

I am a public member to the IACC, which was set up by the reathorization in 2011. All views above (and anywhere) are my own. While there are certainly things I would hope could be done differently in the way the U.S. manages autism research, handing control over to a few small groups so they can push a failed agenda on vaccines is not the direction we should go. Scuttling the reauthorization because support is not going into further research on this failed idea is also not the direction we need to take. Not at all.

It’s very telling that these groups for the most part hide or downplay their position on vaccines. The NAA, for example, recently ran into controversy about their stance and lost a fundraising opportunity with the national restaurant chain Chilis. The NAA leadership paid lip service to effect that the statements on their website are old views, but those statements remain. They know this position is a liability in public. But rather than accept that the view is a liability for good reason, they chose to downplay their views.

I don’t know if many in the legislature are giving them a serious listen, but I hope not. These groups do not represent the autism communities. They certainly are not showing an effective leadership, working to scuttle a law and lose hundreds of millions of dollars in funding if their own failed ideas are not supported.

By Matt Carey

More Canary Party financial documents

2 Mar

The Canary Party grew out of the “vaccines caused an autism epidemic” movement. It’s a small group based in Minnesota. They bill themselves as:

The Canary Party is a movement created to stand up for the victims of medical injury, environmental toxins and industrial foods by restoring balance to our free and civil society and empowering consumers to make health and nutrition decisions that promote wellness.

Last July I wrote about their financial documents in Financial documents for the Canary Party. In that article I made the incorrect statement: “The Canary Party is not a charity, so they do not file form 990′s with the IRS.”

It turns out that they do file form 990. I can’t find them on Guidestar (perhaps because they are new?), but I found this one online. It’s for 2011, when the party formed.

When I wrote last July about the Canary Party, I noted that the financial statements on the Minnesota State Websites indicated that in their founding year (2011) they were largely funded by donations from Canary Party members/officers/founders Jennifer Larson ($40,665) and Mark Blaxill ($15,000).

The form 990 linked to above was an amended form, filed in July of 2013. Coincidentally, filed 10 days after my article about their financials. Per that amended IRS tax form for 2011, those amounts were not donations but loans.

The description of the organization’s mission is given as:

The time has come for a change. The mounting crisis in the health of children and other vulnerable groups has not only been ignored by medical authorities, it has been suppressed. As parents, citizens and advocates for the health of future generations, we must rise up to call attention to this crisis and take action to end it. In nominally democratic societies, which sadly are increasingly corrupted by the power of entrenched interests and economy of influence that surrounds the medical industrial complex, we can most effectively effect change by mobilizing for political action in order to take action against these corrupt forces. It is time to come together to form the Canary Party.

There’s another description as well, but you get the point. It’s a bit much, in my view, but not really out of line with their statements since.

At the time I wrote my previous article, it looked like the revenue to the Canary Party was decreasing. I wrote, “The Canary Party pulled in $72,000 in 2011 and $49,000 in 2012.” (at the time I didn’t know that a large part of the 2011 cash might be from loans). I noted that in 2012 a large fraction of their revenue came from a single donor, one Barry Segal, who apparently has since become disaffected with the Canary Party. I noted:

Per another comment posted to Respectful Insolence, the association between the Canary Party and Mr. Barry Segal appears to be strained. As Mr. Segal accounted for $30,000 of the party’s $49,000 revenue in 2012, one does wonder what 2013 revenue will look like.

Well, from the State of Minnesota site, here is the 2013 financial report on the Canary Party.

The Canary Party took in $17,245 in 2013. Of that, $15,000 was from Mr. Segal on January 2nd. The Canary Party started the year with $15,562.14 and, after $32,300.02 in expenses, ended the year with $687.12 in the bank.

To recap revenue in the last three years:

2011: $72,000 (of which $55,665 may have been in the form of loans)
2012: $49,000
2013: $17,245

Year-end assets

2011: $9,259.07
2012: $15,694.19
2013: $687.12

In other words: revenues and assets are way down. One does wonder how long the Canary Party will last, given these trends.

I find redefining the initial donations as loans to be very interesting. I don’t see evidence that the Canary Party paid back any portion of the loans in 2013. And, given their financial status, I don’t see the possibility of paying back the loans as highly likely. I do have a speculation as to why they might redefine the donations as loans, but I’ll hold off on that for now.

edit to add: here’s the part of the form 990 where they state that they are correcting the original to classify the contributions from the board members as loans.

CP Form 990

By Matt Carey

Mark Blaxill on the Geiers: they do sloppy work

13 Oct

Mark Geier and, more recently, his son David have been active promoting autism as vaccine injury for over 10 years (Mark Geier has been active as an expert in, and been criticized for his lack of quality work, the vaccine court on non-autism issues for about 20 years). They have written multiple papers, ranging from bad to worse, attempting to argue the case that vaccines (and especially thimerosal) are a primary cause of autism.

There are multiple discussions over the years of the Geiers here on Left Brain/Right Brain, Respectful Insolence as well as many other places. The best work was done by Kathleen Seidel at, but due to a server crash much of that content is not readily available. (although it is worth searching for the cached versions or the versions on the Wayback Machine).

The work of the Geiers is so poor that it has always been a wonder to me that no criticism has come from anyone promoting the idea that vaccines caused an epidemic of autism. It isn’t that those promoting the vaccine-epidemic idea are not bright, leaving me wondering if they are too biased by their beliefs or just unwilling to speak publicly against an ally. But, recall, these are the same people who closed ranks around Andrew Wakefield in the face of clear and proved ethical violations.

If we are to believe Jake Crosby, former writer for the Age of Autism blog, it appears that the tacit approval of the Geiers has, at least in part, been a case of “circle the wagons”. I.e. people defending an ally over speak their opinions. Mr. Crosby has blaxillwilliams and quotes more emails where Mark Blaxill (former board member of SafeMinds and a long-time proponent of the idea that mercury in vaccines are a primary cause of autism) expresses his views about the Geiers to Mike Williams (attorney involved representing the families in the Omnibus Autism Proceeding).

In an email image on Mr. Crosby’s blog, Mr. Blaxill is reported to have stated:

In the interest of full disclosure. I thought you might like to see my critique of the Geiers’ latest work on VSD. I have not been a big fan of the Geiers. I worry they do not represent our side well. They do sloppy work.

In another email (quoted by Mr. Crosby, the link to the original is nonfunctioning) quotes Mr. Blaxill as stating:

“As to the Geiers, I may be a bit of a minority voice here, but I worry very much that they can do our cause more harm than good. They are not very good scientists, write bad papers (both writing badly and reporting in sloppy fashion) and attract too much attention to themselves as individuals. In this last regard, they don’t show nearly as well as Andy Wakefield but they’re trying to play the same role. Frankly, if I were on the other side and were asked to critique their work, I could rip it to shreds. I’m surprised they haven’t been hit harder. So I think you are wise to diversify.”

Mr. Crosby’s stance is that this constitutes “interference” in the Omnibus Autism Proceeding. I.e. Mr. Crosby seems to imply that the Geiers are not sloppy scientists whose work is poor, but that the Geiers should have been allowed a more active role in the Omnibus.

In this case I find myself agreeing, in part at least, with Mr. Blaxill. The work by the Geiers is poor. Where I don’t agree is Mr. Blaxill’s decision to hold back on making those statement public. Not just because it’s hard to take the stance that one is a only “…interested in the quest for the truth” when one holds back on key information like an entire critique of the Geiers’ VSD paper. No. It goes deeper than that. The Geiers’ junk science went beyond promotion of the idea that thimerosal is a primary cause of autism. The Geiers ran a clinic for many years. Mark Geier was a licensed physician, David Geier worked in the clinic (and has been accused of practicing medicine without a license). Through their papers and their talks at autism parent conventions like AutismOne, the Geiers became well known. One of the “brand name” autism clinics. They reached this level of respect within their community because no one within that community dared to speak out.

I’ve noted on Left Brain/Right Brain many times before that these parent conventions differ markedly from real science conferences in that no one ever seriously challenges the speakers. They can present almost any theory or idea, especially if they tie it to autism as vaccine injury, without anyone standing up and saying, “that makes zero sense”. These aren’t science presentations, they are advertisements. It would be interesting to see how many of these conventions Mr. Blaxill attended and yet remained silent on the “sloppy” work that could be “ripp[ed] to shreds” that the Geiers presented. Instead, parents were presented a view that the Geiers were good scientists who suffered unjust criticism for their “brave” stance on vaccines.

The Geiers were promoters of chelation as a treatment for autism. Not only does chelation have no scientific basis to be an autism treatment, a study just out this week using rodents states that chelation could be harmful if there is no real heavy metal toxicity:

Finally, we also found that succimer treatment produced lasting adverse neurobehavioral effects when administered to non-lead-exposed rodents, highlighting the potential risks of administering succimer or other metal-chelating agents to children who do not have elevated tissue lead levels. It is of significant concern that this type of therapy has been advocated for treating autism.

It is highly likely that Mr. Blaxill would disagree with the statement that chelation has no good scientific basis as a treatment for autism. He’d be wrong, but that’s been covered over and over before. The Geiers moved on from standard chelation to stranger, more dangerous therapies. As an aside, if chelation was a successful treatment one has to wonder why the Geiers were prompted to move on to using Lupron as an autism treatment. Lupron is very serious medicine and it shuts down sex hormone production in the body. Why Lupron, one might ask? The Geiers convinced themselves (or convinced themselves that they could pass off this explanation) that mercury bound itself to testosterone in the brain, making it hard to chelate. They cited a paper showing that if one heats testosterone and mercury salts in benzene, one could form these mercury/testosterone complexes. They actually claim (yes, they tried to patent this idea to make money off it) that this paper shows that “It is known in the art that mercuric chloride binds arid forms a complex with testosterone in subjects”. The “subjects” are beakers of benzene, not animals and not people. Add to that the lack of an explanation of how shutting down hormone production would break up these complexes. The Geier “science” supporting Lupron would be laughably bad if it wasn’t used to subject disabled children to Lupron injections.

Lupron clearly has no basis as an autism therapy. In fact, the “lupron protocol” played a major part in Mark Geier losing his medical licenses. One has to ask, how did the get such traction for such an obviously bad idea? For one thing, the Geiers were considered respected scientists in the vaccine injury/alternative medicine autism community due to their previous and ongoing work trying to link thimerosal and autism. Work which Mark Blaxill considered “sloppy” and worthy of being ripped to shreds. But instead of sharing his views on the Geier papers with the public, Mr. Blaxill shared them privately within his own circle.

It’s worth noting that the email quoted above was written before the “Lupron Protocol” was developed. We don’t know if Mr. Blaxill was alarmed by the emergence of the “Lupron Protocol”. I can’t find where he spoke out against it. We can see that his blog (under a different writer) promoted the idea as “MERCURY, TESTOSTERONE AND AUTISM – A REALLY BIG IDEA!“. Mr. Blaxill doesn’t seem to have commented there. For all the papers the Geiers have published, Mr. Blaxill only mentions them once in his book “Age of Autism. But as we’ve seen, tacit approval (silence) may not be the same thing as real approval.

Mr. Blaxill had the courage to testify before a congressional hearing last year. A hearing where the politicians had been lobbied in advance to be favorable to his cause. When it came to disagreeing with one of his allies, that courage was lacking. He allowed “sloppy” science from an ally to go unchallenged. An example of the fallout of such a decision, in my opinion had he stood up he could have slowed or even stopped the “Lupron Protocol”, a therapy which in my opinion amounts to the abusive treatment of disabled children in an uncontrolled and unapproved experiment.

By Matt Carey

No, the thimerosal in the flu vaccine does not explain why autism rates did not go down

6 Oct

Surprisingly enough, there are still people promoting the idea that the rise in autism diagnoses observed over the last decades was caused by thimerosal in vaccines. The original argument was this–vaccines were added to the vaccine schedule in the 1990’s and with them the infant exposure to thimerosal increased. Concurrent with this rise in infant thimerosal exposure was a rise in autism diagnoses. Add to this a poorly concocted argument that autism resembles mercury intoxication and you have the basis for the mercury hypothesis.

Thimerosal was phased out of infant vaccines over 10 years ago. Thus, if the thimerosal hypothesis were true, reported autism rates should be declining by now. As far back as 2005 David Kirby (whose book “Evidence of Harm” played a major role in promoting the mercury hypothesis) acknowledged this point in a statement

If the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis.

It’s 2013. Autism rates in California have not declined. Not in Special Education. Not in the CDDS roles. And, yes, we are six years past the 2007 deadline that David Kirby gave us.

To be specific, let’s use the same method that David Kirby and others used to claim a thimerosal induced autism epidemic in the 1990’s (namely the California DDS client count–which not a good method, by the way). Autism “rates” have gone up by over 150% since thimerosal was phased out of infant vaccines. The age 3-5 bracket had about 4000 children in 2003 and is currently over 10,000.

CDDS 3-5

So we have more kids in California receiving services under the autism label than when thimerosal was in vaccines.

This is but one in a huge list of reasons why the thimerosal hypothesis doesn’t work.

But let’s go back in time a bit. Not so long ago one would hear proposals that we go back to the vaccine schedule of the early 1980’s when, it is claimed, the autism rate was 1 in 10,000. Fewer vaccines, less thimerosal, less autism. So goes the logic.

Generation Rescue, in fact, used to recommend the 1983 schedule as one of their alternative schedules

Turn back the clock
Comment: This is the schedule from 1983. If it worked for kids then, why doesn’t it work for kids now?”

Does it make sense to go back to the 1983 schedule? No. Why? OK a lot of reasons, but let’s focus on the fact that infants were exposed to more thimerosal in the 1980’s than today. Infant vaccines have no or only trace amounts of thimerosal.  So if thimerosal were the (or even a single) primary cause of autism risk, we would see autism rates lower today. To not only 1990’s levels, but to something like 1980’s reported levels. Assuming that the reported rates in the 1980’s were an accurate count of how many autistics there were then (a bad assumption but it’s the one they use).

To recap–Infant thimerosal exposure from vaccines peaked at nearly 200 micrograms in the 1990’s, up from about 100 micrograms in the 1980’s and is now less than 10 micrograms. And autism rates have not declined at all. Much less to 1980’s levels.

Once anyone says this the instant answer is that there is still thimerosal in some influenza vaccines. This, they say, is why autism rates have not declined. (note that thimerosal containing vaccines, including influenza vaccines, are banned in California for infants and pregnant women…and autism “rates” have continued to climb here).  

For completeness sake, let’s consider a kid who gets the maximum exposure to thimerosal from vaccines. I.e. a non California kid.  A kid who turns 6 months (the earliest age they will give a flu vaccine to a kid) during the flu season.  That kid will get 2 vaccines in the first year (6 and 7 months) then another influenza vaccine each year thereafter. Each with 25 micrograms of mercury from thimerosal. How does the thimerosal exposure compare to the 1983 schedule?  Take a look for yourself (exposures in micrograms of mercury from thimerosal):

1983 schedule 2013 schedule
DPT Inluenza
2 months 25
4 months 25
6 months 25 25
7 months 25
Total by 1 year 75 50
18 months 25 25
Total by 2 years 100 75
30 Months 25
Total by 3 years 100 100

So by age 3, the exposures are the same.  Except that the kid of today gets the thimerosal later and more spread out over time.  As an aside–most people who talk about the rise in thimerosal exposure during the 1990’s neglect to point out that the cumulative exposure in the 1980’s was already 100 micrograms. I.e. the “safe” level was significant.

If thimerosal were the driving force behind the rise in autism diagnoses, we should be back to 1983 levels, misrepresented by those claiming an epidemic as 1 in 10,000.  Instead we are at 1-2%.  The “rates” didn’t go down.

By this point the proponents of thimerosal are basically screaming, “you are forgetting the vaccines recommended to pregnant women!” No, I just put that off until now.  Sure, the influenza vaccine is recommended for pregnant women, but as the CDC notes:

Prior to 2009, influenza vaccination levels among pregnant women were generally low (~15%) (5,9).

So, from about 2000 to 2009 there wasn’t a big increase (or even a large part of the population) getting influenza vaccines while pregnant, nor were their children getting exposures higher than those in the 1983 schedule.

Take a look at that graph for California administrative autism prevalence again. Between 2002 (after the drawdown of thimerosal in vaccines) and 2012 the autism count doubled. Thimerosal exposure was down. A lot. Below 1990’s “epidemic” levels. Back to the 1983 “worked for kids then” levels. But autism “rates” continue to climb.

The people still pushing the idea that thimerosal is a (or even the) primary cause of autism are not unintelligent. We are talking about college educated people. Ivy league schools. A former journalist, an intellectual property expert and more. There is no math above. It’s all quite simple and straightforward. It uses the exact same logic and methodology they used to promote the idea that mercury causes autism. This is where intellectual honesty and basic integrity should kick in and get people to suck it up, admit their mistakes and start repairing the harm they have caused.

I’m not holding my breath.

By Matt Carey

Is there a split in the autism-vaccine groups?

1 Mar

For people who watch the public discussion of autism and vaccines, organizations like Generation Rescue, SafeMinds, the National Autism Association and TACA (and others) come to mind. One less public organization is Focus Autism. Focus Autism is a private foundation. In other words, they don’t accept donations from people outside the foundation. Here are tax forms submitted by Focus Autism in 2010 and 2011:

2010 tax form 990
2011 tax form 990

In 2011, Focus Autism pulled in $1.7M, which makes it as big or bigger than most of the other groups named above. If you peruse their website, it is clear that they have promote the vaccine-epidemic idea. Their “about” statement is:

FOCUS AUTISM is dedicated to finding answers about autism causation, no matter how inconvenient it might be. We believe in accountability, transparency and above all, a sense of urgency.

Childhood vaccine policies must be carefully administered. We demand strict avoidance of neonatal vaccination and vaccination of vulnerable children.

We must hold leaders of government, corporations, and the medical establishment accountable for failures that have led to the autism epidemic.

Leaders in the field agree there is a subset of vulnerable children who are predisposed to vaccine-related injury. We want those children identified, so that we do not needlessly harm innocent children.

Millions of dollars have been funnelled into genetic research in a frantic search for the single gene or a small number of genes responsible for the autism epidemic. Emerging consensus rejects a purely genetic cause. Most experts now agree that the primary causes must be a combination of genetic and environmental factors.

They have funded a mix of projects and groups. In 2010, most projects were not vaccine-focused. In 2011 they funded: Autism Speaks ($51,000), the Marcus Autism Center ($50,000), projects in Africa and many other non-vaccine focused projects. In 2011, Focus Autism funded vaccine-oriented groups such as the National Vaccine Information Center ($37,500), SafeMinds ($70,000), Generation Rescue ($40,000).

In 2011, Focus Autism added to its board Louise Kuo Habakis and Katie Wright, both vocal proponents of the vaccine-causation idea. The board currently includes Brian Hooker, who is also a vocal proponent of the idea. There has been some discussion lately about Mr. Hooker’s involvement with the autism hearing held by the Committee on Government Oversight and Reform last year. The idea being presented that Mr. Hooker, lone citizen, made contact with members of congress and got the hearing moving.

Consider that Focus Autism was founded and is apparently run by Barry Segal. Mr. Segal’s family foundation has over $50M in assets, and seems to be doing a great deal of good work, especially in sub-saharan Africa. Mr. Segal’s company sold for an undisclosed amount, but had sales of $1.7B (yes B) in 2006.

Here is a picture from Facebook showing Mr. Hooker in the audience of the congressional hearing from Focus Autism’s facebook page. Sitting next to him is Mr. Segal’s wife, then Mr. Segal.

Hooker-Segal 2

I consider it possible he had a bit more support in his efforts than, say, I might have.

Focus Autism includes in its list of partners: Age of Autism, EBCALA, the National Vaccine Information Center, the Canary Party and the Dwoskin Family Foundation. All groups promoting the idea that vaccines cause autism.

As to the split mentioned in the title of this article, consider this short blog post on the Focus Autism website: The Fragmented Autism Community:

The so called autism community is represented by:

#1 Autism Speaks, which because of Bernie-Julie thing refuses to meaningfully go after environmental issues, especially vaccines.

#2 Safe Minds, another disaster and I don’t know (or care) what their agenda is.

The rest of the community is fragmented, acts like our congress, accomplishes nothing and has an approval rating similar to congress. In both cases we need to change.

“Bernie” is most likely Bernie Marcus, co-founder of Home Depot and founder of the Marcus Autism Center. I’m not sure who “Julie” refers to. SafeMinds, well that reference is clear. It is also interesting in that Focus Autism donated money to both the Marcus Autism Center and SafeMinds in 2011. Somewhere in the past couple of years, there seems to have been a falling out.

Given some of the current discussion about the way the congressional hearing was put together, specifically Mr. Hooker’s and SafeMinds’ roles (see here, here and here), it is interesting to see the organization he works with taking such a harsh stance on SafeMinds.

The name Barry Segal was familiar to me, and it took me a few days to recall where I saw it before. It was on a discussion at the Forbes website. I usually avoid bringing discussions held on other sites to this blog, but I think these statements show the possibility of further rifts, both between autism organizations and within organizations. Here are the statements made by Mr. Segal (or someone using his name, but I have no reason otherwise) at Forbes:

First this one (actually two, it was repeated):

I guess you are aware that in 1960, 3 years before the measles shot, 100 people died of measles. In 2012 over 80,000 of the babies born that year will end up on the spectrum. Bob Wright knows certain children are vulnerable to vaccines but Bernie Marcus won’t let him go there. Do you really give your child or grandchildren a Hep b shot at birth, or do you have them practice safe sex till they are 6 years old. (That is when the shot wears off)

Indicating his opinion that Bob Wright (founder of Autism Speaks) wants more vaccine research but that Bernie Marcus (Marcus Autism Center and Autism Speaks) is blocking it.

Mr. Segal went on:

I won’t discuss Hepatitis B with you except that the following five countries, Denmark, Sweden, France, Germany and Japan only give the Hepatitis B vaccination to children whose mothers test positive.

As far as Bob Wright, I have met with him and he shared with me, the following thoughts:
1.That there needs to be more vaccine research
2.That there should be no more thimerosal in any vaccines or medicines

I had dinner with Bernie Marcus in Florida. Towards dessert, I mentioned what Bob Wright had said and he told me, “There is no thimerosal in this country today,” to which I replied, “ You’ve got to be kidding me, you can go to your local drug store and get a shot of thimerosal in your flu injection.” He is clueless and after starting the Marcus Autism Center and hearing Bob Wright had an autistic grandchild, he reached out to Bob Wright to form Autism Speaks with the intent that they do not address the vaccine issue. Peter Bell and Holly Peete both have vaccine injured children and will not vaccinate their subsequent children as mandated.

And this:

I had breakfast with Peter Bell on 12/8/11. He explained to me that the increase in the vaccinations alters the immune system. When he lived in CA, he didn’t have to vaccinate his children (philosophical exemption is available in CA) but when he came to NJ, he slowed it down as much as possible. Peter suggested Tylenol could be part of the problem.

Rodney Peete said in his book, “NOT MY BOY!” co-authored by Danelle Morton:

“At home that night, R.J. had a terrible fever and started shaking violently, just short of something like a seizure. Holly called the pediatrician to ask him what could have caused this. Should we take R.J. to the hospital? The doctor was unruffled and told us it was not a reaction to the shots. He recommended that we give R.J. some Tylenol to help him with the fever and he promised that R.J. would be fine. R.J. had a terrible reaction to the Tylenol and we rushed him to the emergency room late that night. We believe he went into some kind of toxic overload shock. After that, we didn’t hear the words “Mommy” or “No” for about four years.”

As far as vaccine safety, the problem is much more than just thimerosol. Today, the autism incidence rate is 1 in 88 and this is for children born in 2000. If we apply a more conservative 8% growth rate to this rate, we’re looking at over 80,000 children born this year being on the spectrum!

In these two suggesting that Peter Bell (Autism Speaks), Holly Robinson Peete and her husband Rodney Peete (HollyRod foundation, Autism Speaks) are also proponents of the vaccine-causation idea.

All this again indicating tensions between and within autism orgs over the topic.

For anyone who thinks the vaccine-autism-epidemic idea is going away from the public discouse any time soon, keep in mind that this is not a grass roots movement. There are millions of dollars being spent by these groups every year. Much of it from wealthy donors.

Mr. Segal had some very interesting things to say about the departure from Autism Speaks of their previous president. That is discussed in Was Mark Roithmayr pushed out of Autism Speaks over vaccines?

By Matt Carey

No, the autism “rate” in California did not go down after removing thimerosal from vaccines

26 Feb

I recently attended a talk where the speaker showed autism prevalence by age group for a large HMO in California. The administrative prevalence (fraction of people in the HMO identified autistic) was still going up as of 2010, and the speaker indicated this trend continued to 2012. California is an interesting case study because not only was thimerosal removed from vaccines along with the rest of the U.S. starting in the late 1990’s, but the state enacted a law which required that pregnant women and children under three be given thimerosal free vaccines from 2006 onward. So, with the exception of an an exemption in 2009 and another one right now, even the influenza vaccine in thimerosal free. I bring this up because it is a common argument that somehow the exposure from the flu vaccine is keeping the rate climbing, even though at most this is a lower exposure than that from the 1990’s pediatric vaccine schedule.

This all said, the talk made me dive back into looking at autism prevalence. I decided to finally write about the fact that the autism prevalence in Denmark is higher post thimerosal than while thimerosal containing vaccines were in use. This is completely unsurprising, but a myth has been propogating that it came down and that fact was being hidden.

As it turns out I also checked back with what once was the most common source of autism data for the armchair epidemiologist: the California Department of Developmental Services (CDDS). (I admit one could argue that Special Education data are the most common source for the armchair epidemiologist). The CDDS provides services to disabled Californians and keeps and makes public statistics on their client base. For a long time, every quarter they would come out with a report. For a long time, every quarter these reports would be followed by announcements about how the data showed that vaccines cause autism. One of the people you could always count on was David Kirby (author of the book, Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy, and basically a PR man for some of the vaccine-causation groups). Mr. Kirby went so far as to claim that these data were the “gold standard of autism epidemiology”. Well, the data had their uses (such as identifying and quantifying some of the social influences behind the increase) but it is not an easy task to get results from them. The idea that they represent an accurate count of all those with ASD’s (or even accurately account for all individuals with autistic disorder) is a stretch.

But this didn’t stop David Kirby. Back in 2005, David Kirby was claiming that there was an indication that the administrative prevalence in California was starting to drop, and if the trend continued this was a sign that the removal of thimerosal was having an effect:

Stay tuned. If the numbers in California and elsewhere continue to drop – and that still is a big if — the implication of thimerosal in the autism epidemic will be practically undeniable.

Well, by 2007 it was clear that the California data were not really showing a drop. In addition, the lack of a drop was published in 2008 as Continuing increases in autism reported to California’s developmental services system: mercury in retrograde.\

The rise in the number of autism clients in the CDDS database was key to the idea of the mercury-induced epidemic. David Kirby (and others) relied on these data and Mr. Kirby even acknowledged that the data should start showing a drop (statement from 2005):

If the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis.

The reason is that 5 year olds in 2007 were born after the removal of thimerosal from vaccines. Their exposure to thimerosal was much less than kids in the 1990’s. If the “thimerosal caused an autism epidemic” idea were true, the rates would have to drop. They should drop back to pre-1990 (actually pre 1980) levels if thimerosal were the main, or even a main, cause of the rise.

My recollection is that Mr. Kirby did later backpedal and claim that we would have to wait until some much later date, but it was a weak argument (even by David Kirby standards).

Sorry to keep diving into past history, but one of the strangest moments in the mecury debate (and I can use the term this time, because there was a debate) came in San Diego in 2007. David Kirby debated Arthur Allen in the UCSD Price Center (about 100 yards from my old office, as it turns out). Presented with the fact that even though thimerosal exposure from vaccines had gone down, the California numbers kept going up, David Kirby presented (in something like 100 power point slides!) a four pronged response. First was a claim that California HMO’s had stockpiled thimerosal containing vaccines, so the exposure from vaccines didn’t really go down as much as reports were claiming. Then:

1) A gigantic plume of coal smoke from Chinese power plants has settled on California, depositing lots of mercury and therefore causing the autism numbers in the state to continue to grow.

2) Bad forest fires have put tons of mercury into the air, depositing lots of mercury etc…

3) Cremations (!). The burning of dead bodies with mercury amalgam in their mouths has added even more mercury to the air.

It was a hail Mary pass, to be blunt. Lot’s of handwaving and ignoring the facts.

In 2007, the CDDS changed the way they assessed and counted their clients and they stopped publishing the quarterly reports. As you can imagine, many claimed this was part of a conspiracy to hide the fact that the autism rates were declining in California. And with that the quarterly ritual of misinterpreting and deconstrucing the data came to an end.

All amusing history, sure, but one might ask, why bring all this up again? Well, because it turns out that the CDDS started putting out quarterly reports again in 2011. Yes, there’s a gap of a few years in the data. Yes, some things changed (for example, the CDDS now shows the PDD fraction of autism client base). Given these limitations–and the other limitations in the CDDS data (i.e. they are *not* the “gold standard” of autism epidemiology), what do these data show? The upward trends continue. More individuals served by the CDDS with autism, even though thimerosal was removed from vaccines. Here’s the total–all ages–count for CDDS clients in the autism category (click to enlarge):

CDDS total

Looking at the younger age groups, those whose exposure to thimerosal is much lower than for kids born in the 1990s, there is also an increase. Here is the age 3-5 age group (click to enlarge)

CDDS 3-5

and the 6-9 age group (click to enlarge):

CDDS 6-9

9 year olds in 2012 were born in 2003. Post the removal of thimerosal nationwide. 5 year olds were born in 2007, post thimerosal nationwide and post the California law prohibiting mercury in vaccines for pregnant women and small children. In both groups, the CDDS autism counts are higher than they were in 2002 (the earliest date in the currently available data). Which, in turn, was much higher than the counts from the 1990’s. Here is a figure from the Schechter-Grether paper refenced above:

S-G CDDS paper figure

Which is all a very long way of saying: years ago the evidence was against the thimerosal/epidemic idea; it is even more clear now. For years we heard Mr. Kirby and others talk about how those responsible should step up and admit what happened. Well, the fact is they did. Now it is time for those who promoted the mercury notion to step forward and show they have the guts to admit they were wrong. Because they were. Clearly wrong. It would take a lot of guts to step forward and admit the mistakes. Even though their influence has waned, it would help the autism communities. While I have focused on David Kirby in this discussion, the list is much longer of people who should step forward. I’m not going to hold my breath.

By Matt Carey