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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

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

For the first time in history!

29 Oct

Here’s one of those statements that seem dramatic until one puts it into historical context:

For the first time in history, a biologically plausible mechanism of action has been discovered linking a vaccine to a serious adverse event.

Who wrote that? Someone from a group calling itself “SaneVax”. And repeated by none other than Dan Olmsted, proprietor of the Age of Autism blog. Yes, a man who has for years promoted the (failed) idea that mercury in vaccines caused an epidemic of autism is repeating the claim that ” For the first time in history, a biologically plausible mechanism of action has been discovered linking a vaccine to a serious adverse event.” The same Dan Olmsted who has offered up support for Andrew Wakefield and his failed claims that the MMR vaccine also caused a rise in autism rates.

Begs the question of why Mr. Olmsted has put so much time and effort into ideas like mercury and the MMR if they had no biologically plausible mechanism.

Of course no one believes Mr. Olmsted has changed his mind. It’s fairly clear this is just sloppy writing by “SaneVax” and some quick copy-and-paste work by Mr. Olmsted (sure he cited the source but did he read it?) . It would be amusing if the thimerosal and MMR ideas didn’t cause (and didn’t continue to cause) harm both within the autism communities and the general population.

For the record, this claimed “first biologically plausible mechanism” is from a paper by Prof. Shaw. His paper proposing a link between aluminum in vaccines and autism was very poor. Add this to the lack of relavence to autism andI see little point in putting much time into this new (gardasil) paper.

Also for the record and more historical context:

There were reactions to multi dose vaccines in the pre preservative era. The biologically plausible mechanism there was the growth of bacteria introduced into the vial by the needle.

There were reactions to the early polio vaccine produced by Cutter Laboratories. The biologically plausible mechanism there was the injection of live polio virus instead of the inactivated virus that was supposed to be used.

Similarly, the live virus in the oral polio vaccine  can occasionally cause paralysis. The OPV is no longer used in the U. S. after the efforts of a true vaccine safety advocate.

It probably seems strange but it is these last examples that strike me then most sad. Sure, they forgot their own claims that vaccines cause autism. But these other examples are very real, demonstrated vaccine reactions with clear biological mechanisms. But I am being naive. I am expecting a discussion of facts rather than a public relations and political commentary.

Edit to add: I’m not the first to notice this sloppy writing.

What letter, Mr. Olmsted? Why this one, of course.

14 Mar

When Brian Deer wrote one of his 2009 article for the Sunday Times: Focus: Hidden records show MMR truth, he introduced the article with a discussion of the father of Child 11, the only American child in the Lancet 12:

ON a Monday morning in February 1997, a taxi left the Royal Free hospital, in Hampstead , northwest London. It turned out of the car park and headed to the renowned Institute of Cancer Research, six miles southwest in Fulham.

In the back of the cab sat a California businessman, whose commercial interests lay in electroplating, but whose personal crusade was autism. On his lap was a plastic pot, in which snips of human tissue floated in protective formalin.

The snips were biopsies taken from the gut of the man’s five-year-old son, then a patient on the hospital’s Malcolm ward. The boy, Child Eleven, as he is known to protect his privacy, had been enrolled in a programme to investigate alleged risks of the three-in-one measles, mumps and rubella (MMR) vaccine.

Mr. 11, as he is known, was the one parent who chose to confirm the results he was given by Mr. Wakefield’s team at the Royal Free. In particular, he wanted to confirm whether the tissue samples taken from his son really contained measles virus, as he was told. After taking samples to people outside Mr. Wakefield’s team at the Royal Free:

“It took a big fight to get the information,” said Mr Eleven. “They told me there was no measles virus. I had the tests repeated three times at different labs in the US, and they all came back negative.”

This comes as no surprise to readers today. Mr. Wakefield’s graduate student, Nicholas Chadwick, was telling him all along that the virology results were negative.

In a later report, How the case against the MMR vaccine was fixed, Mr. Deer also introduced the article with Mr. 11. He noted that Child 11 was listed in the Lancet article as having a first behavioral symptom of “Recurrent “viral pneumonia” for 8 weeks following MMR” as occurring 1 week after the administration of the MMR vaccine, a point critical to Mr. Wakefield’s claims. However, according to documents available to Mr. Wakefield, the child showed signs before the MMR. Per Mr. Deer:

But child 11’s case must have proved a disappointment. Records show his behavioural symptoms started too soon. “His developmental milestones were normal until 13 months of age,” notes the discharge summary. “In the period 13-18 months he developed slow speech patterns and repetitive hand movements. Over this period his parents remarked on his slow gradual deterioration.”

Enter Dan Olmsted, proprietor of the Age of Autism blog. Mr. Olmsted sought out Child 11’s father to corroborate Mr. Deer’s story. Such is the importance of contradicting Mr. Deer that he was willing to contradict Mr. Wakefield’s claim in the Lancet as well. Mr. Olmsted claims that Mr. 11 wrote him that rather than 13 months, “The onset of his autistic-like behaviors began around 18 months.”

The one thing that Dan Olmsted, Brian Deer and Mr. 11 apparently agree upon: the report in The Lancet is incorrect. Somehow I expect there is some convoluted explanation Mr. Olmsted would offer to avoid this problem, but lets move on. Unfortunately to a rather odd back-and-forth where neither party (Deer and Olmsted) communicating directly. To start, Mr. Olmsted would have us believe that Mr. 11 is annoyed? angry? with Mr. Deer’s reporting and thinks they “misrepresented the facts”.

Mr. Olmsted wrote:
[edit to add: Mr. Olmsted is quoting Andrew Wakefield’s defamation complaint here. I.e. these are Andrew Wakefield’s words]

Indeed, the child’s father has since written Deer and the BMJ to explain that Deer was misrepresenting facts about child 11, yet Deer and BMJ have printed no retraction, correction, or mention of this fact.

Mr. Deer noted this claim by Mr. Olmsted in his declaration:

Neither I nor (to my knowledge) the BMJ have received any letter from this father accusing me of “misrepresenting facts.” Nor have we received any request from this father asking for any retraction, correction, or for us to take any action at all. On the contrary, the father confirms the terms of the medical record (which he gave me at a meeting in California in September 2007), but disagrees with the accuracy of that record. The matter is thus purely a (very common) situation where parental recall and medical records do not coincide, and naturally parents believe their recollection to be right.

In a recent article, Mr. Olmsted wrote:

But the father told me: “Mr. Deer’s article makes me appear irrational for continuing to believe that the MMR caused difficulties which predated its administration,” a clear contradiction that called for a prompt correction.

See what Mr. Olmsted did there? He cut short Mr. 11’s sentence and added his own ending. Which made me wonder, what was the full sentence and what was the full context.

If you are wondering that too, here is the full sentence from that email, in context:

Based on the incorrect discharge summary I shared with him, Mr. Deer reasonably inferred that my son’s autistic symptom, predated his receipt of the MMR vaccination, which they did not. Mr. Deer’s article makes me appear irrational for continuing to believe that the MMR caused difficulties which predated its administration, but until the incorrect dates in the discharge summary were pointed out to me this week, I failed to realize that thee discharge summary was inaccurate. While the inaccuracies in the Royal Free discharge summary may be chalked up to sloppy record keeping, if my son really is Patient 11 , then the Lancet article is simply an outright fabrication.

Is that an accusation of “misrepresenting facts” by Mr. Deer, as Mr. Olmsted asserts? Rather than call for a retraction or correction, as Mr. Olmsted claimed, Mr. 11 noted that “The Lancet article is a clear misrepresentation of my son’s history”, and that “the Lancet article is simply an outright fabrication.”

How do I know what is in the full email? Brian Deer entered it (redacted, of course) into the public record as an exhibit to his declaration. Given the way Mr. Olmsted was clearly cherry picking the email, I wanted to obtain the source for myself.

With apologies in advance for any transcription errors. But mostly with apologies to the young man who was Child 11 and to his father:

Daniel Olmstead
Brian Deer
Dear Mr. Olrnstead & Mr. Deer:
I have spoken with both of you regarding my son who may be one of the subjects in the Royal Free Hospital’s “research study” on autism summarized in the 1998 Lancet article.

The main reason I am contacting you now is to reiterate to Mr. Olmstead that we wish for our family to stay out of the public eye, and request that in any further discussions of this matter our privacy and the confidentiality of our son’s medical history be respected. We appreciate that in published work you, Mr. Deer, did that. My son has not consented to any disclosures regarding his medical history, and I hope that whatever information you disseminate will be shared in a manner that is not personally identifiable.

My second purpose in contacting both of you is to clear up some confusion, albeit generating additional questions which, as I explain below, I do not think are worth pursuing. Mr. Olmstead informed me that he believes that my son is Patient 1 I in the Lancet article, a conclusion he seems to have reached due to a violation of doctor patient confidentiality by Dr F. Given Dr. F’s distance, so far as I know, from these events, and his current state, it is hard to know what to make of this purported information. Mr. Deer’s article appears to assume that my son is Patient 11 as well, describing conversations with a father of “Patient 11 ” that appears to be me. However, we have no confirmation that Patient 11 is my son. When we got information during the Royal Free’s investigation, we were told he was Patient 13. Only 12 patients are reported in the Lancet article. I have no way of knowing how many subjects were excluded from the final report, or whether my son was one of them.

In any event, the description of Patient 11 in the Lancet article is not accurate if, in fact, it refers to my son. The Lancet article indicates that autistic symptoms started at 15 months, a week after the MMR, which is completely inaccurate; my son’s autistic behaviors started 2-1/2 to 3 months after the MMR, which was administered to him at 15 months. The Lancet article is a clear misrepresentation of my son’s history. Moreover, the Lancet article is not consistent with the Royal Free’s discharge summary regarding my son, and both the article and the discharge summary are inaccurate. One of the incorrect statements in my son’s discharge report was that autistic symptoms were seen from 13-18 months, while the vaccination was at 15 months. This is clearly inaccurate as his symptoms began several months after the MMR, as reflected in my initial correspondence to the Royal Free requesting my son be included in the research study. Based on the incorrect discharge summary I shared with him, Mr. Deer reasonably inferred that my son’s autistic symptom, predated his receipt of the MMR vaccination, which they did not. Mr. Deer’s
article makes me appear irrational for continuing to believe that the MMR caused difficulties which predated its administration, but until the incorrect dates in the discharge summary were pointed out to me this week, I failed to realize that thee discharge summary was inaccurate. While the inaccuracies in the Royal Free discharge summary may be chalked up to sloppy record keeping, if my son really is Patient 11 , then the Lancet article is simply an outright fabrication. My son’s autistic behaviors did NOT begin a week after administration of the vaccine, in fact they began several months afterwards, with several medical complications occurring in between.

The bottom line is that, if my son is indeed Patient 11, then the Lancet article made a false assertion that his symptoms set in immediately after the MMR; in service of some attorneys’ efforts to prove “causation” that, unbeknownst to me, apparently drove this research. If the sloppy mishandling of patient information and inaccuracies in my own son’s records is any indication of how that research was done, then I am very thankful that the Lancet article has been withdrawn and the “research study” discredited. That brings me to my third reason for contacting you, which is to express my hope that we can all move on from this debacle and search for real causes of the current explosion in autism cases. I have been involved in and have supported serious research into the causes of and effective treatments for this illness. We know now that the study reported in the Lancet article was a huge and very costly distraction. I hope that you will join me in looking, with an open mind, at real explanations of the current situation, as well as in advocating for adequate medical care and educational services for the many people affected, so that outcomes can be positive, as they are now proving for my son. While some autism may be a natural part of the human condition, what is happening now requires explanation. We will not get it if we spend time rehashing old debates.

As for the confidentiality issues, I appreciate and rely on your courtesy and discretion

Mr. 11 asked for courtesy and discretion on confidentiality issues. I would put to Mr. Olmsted that when he published the first name of Child 11, he may not have been heeding Mr. 11’s wishes.

The father has made a few more statements about these events:

First, about the Age of Autism series: “Olmsted’s logic is twisted and emotional”.

About the research at the Royal Free: “We all make daily human errors, but I guess some people ( Royal Free ) do it for a lifetime !”

and

“What a HUGE embarrassment, and scientific fiasco ! “.

Mr. 11 asked “That brings me to my third reason for contacting you, which is to express my hope that we can all move on from this debacle and search for real causes of the current explosion in autism cases”

Whether one agrees with the “epidemic” or not, the idea of moving on from the “debacle” (which I read in context to refer to the story about Mr. Wakefield and the Lancet study) and focusing on research is a very wise suggestion. As Mr. Olmsted has shown, not only has Mr. Wakefield been a huge distraction, but his supporters have been as well.

Another manufactured controversy

26 Jul

People are mad at Brian Deer. Really mad. His work uncovered a number of facts behind Andrew Wakefield’s research and business interests. These facts, these actions by Mr. Wakefield, led to many of the problems Mr. Wakefield has suffered in recent years. It is understandable that people are mad at Brian Deer. Andrew Wakefield is rather important to the groups who believe that vaccines caused an epidemic of autism. Mr. Wakefield is the researcher who took the parent’s hypothesis and put it into a prestigious medical journal. Mr. Wakefield has good credentials, and demeanor which makes for excellent TV footage. It is difficult to listen to him and think, “here is a man who lied to the world, caused a fear of the MMR vaccine and vaccines in general, and hid not only his faulty research, but other ethical lapses and shortcuts taken along the way”.

Difficult, but not impossible. The U.K.’s General Medical Council decided that contrary to what Mr. Wakefield had to say in his defense, he had misrepresented his work, he had taken many ethical shortcuts. While the GMC wasn’t interested in the vaccine fears promoted by the faulty, even fraudulent research, the GMC did find Mr. Wakefield guilty of ethics violations, research misconduct and dishonesty and had him struck off the U.K.’s medical register.

And, yes, it was the facts that led to the downfall of Mr. Wakefield. But, that doesn’t shield the messenger. In this case, Mr. Deer. Well, he was more than the messenger. He uncovered the facts as well as presented them.

One thing Mr. Wakefield’s supporters are mad about is the fact that Mr. Deer interviewed one parent using a pseudonym. He presented himself as “Brian Lawrence”, not “Brian Deer”. This is not news, having been in the press for at least 7 years. Much more to the point, it isn’t even a controversy, as I’ll show below. But, it is blog fodder. Apparently enough for Dan Olmsted of the Age of Autism to put out 3, count them 3, articles on the subject.

Since AoA have discussed Mr. Wakefield and Mr. Deer on their blog, it is not surprising that people came here looking to see if there would be a response to Mr. Olmsted’s pieces. There was a time when I read the Age of Autism blog, so perhaps, just perhaps, I was aware of the articles. In a comment on my piece, My comment to the IACC, I got the following

Jim Thompson, frequent commenter here, wrote:

Sullivan:

It seems that your interests parallel those on AoA with a major exception. Have you read this?

See “I was visited yesterday, Friday 28th November 2003 by Brian Lawrence…” at http://www.ageofautism.com/201…..dical.html

I used to get a lot of comments like that. Thread-jacking comments pointing me to one blog or another where some heated discussion was supposedly going on. I pulled the comment this time. In this case I felt it justified. The article it was attached to had nothing to do with the subject of the comment. In fact, to be blunt, I found it both ironic and insulting that the comment was attached to that piece.

Yes, my piece asking for research into better medical care for autistics is so like rehashing the “Brian Deer used a pseudonym” argument. If anything, this serves to show the differences between the Age of Autism and Left Brain/Right Brain. Differences which are becoming more pronounced with time. I’m pushing for a better future. They are rehashing their failures of the past.

Believe me, when I first heard that Brian Deer used a pseudonym in order to obtain an interview, I looked into the question. I asked a simple question: can a journalist lie to a source and if so, when?

The answer is, yes, a journalist can lie. As to when: there are two criteria that must be met. First, there must be a pressing need for the public to obtain the information. Second, the information is not expected to be obtainable by straightforward means.

Let’s consider the news investigation into Mr. Wakefield’s research. It is clear that there was a pressing need for the public to know whether the details were being accurately presented. Mr. Wakefield’s research was creating a fear of vaccines in general, and the MMR in specific. The vaccination rates were dropping to dangerously low levels, presenting a public health hazard. An investigation into the research, even if it required suberterfuge, was warranted, as long as the second criterion was met: there must be a valid expectation that the information would be obtainable by straightforward means.

OK, so point one is met. Let’s look at point two. Mr. Olmsted gives us insight into that question himself:

Deer had written a number of critical articles about parents’ claims of vaccine injury, and if he gave his real name, he doubtless feared, Child 2’s mother would not agree to talk to him. Once she checked his blog, she would be more likely to kick him out of the family home than sit still for what turned into a six-hour inquisition.

Mr. Deer is also described by Mr. Olmsted as being considered at the time of the interview as “a journalist notoriously hostile to people who claimed that vaccines had injured their children. ”

Clearly, the second point is met as well: the information was not expected to be obtainable by straightforward means

Mr. Olmsted is, no doubt, quite aware of the ethics of such methods. The Society of Professional Journalists have the following rules (emphasis added):

Journalists should:
— Test the accuracy of information from all sources and exercise care to avoid inadvertent error. Deliberate distortion is never permissible.
— Diligently seek out subjects of news stories to give them the opportunity to respond to allegations of wrongdoing.
— Identify sources whenever feasible. The public is entitled to as much information as possible on sources’ reliability.
— Always question sources’ motives before promising anonymity. Clarify conditions attached to any promise made in exchange for information. Keep promises.
— Make certain that headlines, news teases and promotional material, photos, video, audio, graphics, sound bites and quotations do not misrepresent. They should not oversimplify or highlight incidents out of context.
— Never distort the content of news photos or video. Image enhancement for technical clarity is always permissible. Label montages and photo illustrations.
— Avoid misleading re-enactments or staged news events. If re-enactment is necessary to tell a story, label it.
— Avoid undercover or other surreptitious methods of gathering information except when traditional open methods will not yield information vital to the public. Use of such methods should be explained as part of the story
— Never plagiarize.
— Tell the story of the diversity and magnitude of the human experience boldly, even when it is unpopular to do so.
— Examine their own cultural values and avoid imposing those values on others.
— Avoid stereotyping by race, gender, age, religion, ethnicity, geography, sexual orientation, disability, physical appearance or social status.
— Support the open exchange of views, even views they find repugnant.
— Give voice to the voiceless; official and unofficial sources of information can be equally valid.
— Distinguish between advocacy and news reporting. Analysis and commentary should be labeled and not misrepresent fact or context.
— Distinguish news from advertising and shun hybrids that blur the lines between the two.
— Recognize a special obligation to ensure that the public’s business is conducted in the open and that government records are open to inspection.

As an aside: consider the rules above and Mr. Olmsted’s reporting on autism. “Distinguish between advocacy and news reporting”. “Test the accuracy of information from all sources and exercise care to avoid inadvertent error. Deliberate distortion is never permissible.” and more…

Back to the question of whether it is permissible to use “surreptitious methods of gathering information” in obtaining a story. Aside from these being the published rules of the Society of Professional Journalists, Mr. Olmsted is likely well aware of the method. Back when he was at UPE, Mr. Olmted’s journalism partner on what may have been his real intro into medical news reporting (a series on Lariam) was a gentleman named Mark Benjamin. Mr. Olmsted included Mr. Benjamin in the dedication of his book, “The Age of Autism”.

I believe that this is the same Mark Benjamin who went on to write a series for Salon.com called “Getting straight with God“, a “four-part investigation into the Christian netherworld of “reparative therapy,” a disputed practice to convert gays and lesbians into heterosexuals. ”

How did Mark Benjamin, a straight man, obtain the information he needed for the story? ” I told Harley I was gay, although I am straight and married. I used a fake name. ”

He flat out admits, he lied:

When I arrived in Levy’s office, I was asked to fill out roughly 15 pages of questions about myself and my family. Mostly the questions centered on how I got along with my folks. In a section about my problems, I wrote “possible homosexuality.” The fact is, I’m straight, I’m married to a woman, and I have a 3-year-old daughter and a son due in October. I wrote on the form that that I was married with a kid. But I lied and said I was also living a secret life, that I harbored homosexual urges.

This is why I’m calling this out as a manufactured controversy. Brian Deer interviewed someone using a pseudonym. He misrepresented himself. It happens in journalism. It not only happens, it is clearly allowed under specific circumstances. As a journalist, a journalist whose colleagues have used the same techniques, Mr. Olmsted should be quite aware of this.

et

Underimmunization in Ohio’s Amish: Parental Fears Are a Greater Obstacle Than Access to Care

29 Jun

With apologies for opening the subject of the Amish and autism once again, a recent paper in the journal Pediatrics explores vaccination and the Amish: Underimmunization in Ohio’s Amish: Parental Fears Are a Greater Obstacle Than Access to Care. Seth Mnookin has already discussed this at The Panic Virus at PLoS blogs in Anecdotal Amish-don’t-vaccinate claims disproved by fact-based study.

What is worrisome here is the fact that the nderimmunization amongst the Amish is resulting from parental fears. In a very different study from 2001, Haemophilus influenzae Type b Disease Among Amish Children in Pennsylvania: Reasons for Persistent Disease, most Amish parents who chose to not vaccinate were citing availability and convenience rather than fear as the reason.

To repeat–in 10 years the reasons for non-vaccinating amongst the Amish have changed from convenience to fear. We can’t say exactly why, but it seems quite plausible that the focus on autism, vaccines and the Amish could have played a role.

Given that the “Amish Anomaly” notion seems destined to linger on, I have written up another summary of the history and the facts of the story.

Dan Olmsted, now the owner of the Age of Autism, was once an editor for UPI. It was during his UPI time that he took on the autism/vaccine question that has since dominated his professional life. Back in 2005 he ran a series of stories which investigated the proposed link between autism and vaccines and, in specific, mercury. It was right around the time that the David Kirby/Lyn Redwood book “Evidence of Harm, Mercury in Vaccines and the Autism Epidemic: A Medical Controversy.” was published. This was likely the high water mark for the public’s acceptance of the vaccines-causation idea.

One of the ideas that Mr. Olmsted explored was that of the Amish. He started with the belief that they don’t vaccinate and set out to investigate whether this correlated with a lower autism prevalence. The idea of the Amish being a largely unvaccinated population was set out years earlier. David Kirby describes in Evidence of Harm how Lyn Redwood of SafeMinds discussed this in a presentation she made to congress in the year 2000.

Mr. Olmsted described his investigation starting in a piece, The Age of Autism: Mercury and the Amish . There was plenty of data even then which Mr. Olmsted could have considered which went against his hypothesis. Since then even more data has mounted against the idea.

And, yet, it persists. Often the “Amish don’t vaccinate and they don’t have autism” story pops up in internet discussions following news stories. Books have incorporated the idea. Of course it ends up in alternative medicine books on autism such as Kenneth Bock’s “Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies”. The idea can be found in other boos as well, including “Timeless Secrets of Health and Rejuvenation” (2007) and “Cry for Health: Health: the Casualty of Modern Times” (2010). Again, this is a reason to revisit the debunking of this myth. The myth lives on, even in the face of facts.

In his 2005 UPI article, Mr. Olmsted started out with the assumption that the Amish don’t vaccinate. He set out to see if he could find autistics amongst the Amish, but didn’t look into the vaccination question with any depth:

So I turned to the 22,000 Amish in Lancaster County, Pa. I didn’t expect to find many, if any, vaccinated Amish: they have a religious exemption from the otherwise mandatory U.S. vaccination schedule.

As is well known now, the Amish do not have a religious exemption from the vaccine schedule. They do not have a religious prohibition against vaccination.

This was something Mr. Olmsted could easily have confirmed at the time. He might have checked the 1993 book Amish Society by John Andrew Hostetler (1993), in which he would have found the following statements about medicine:

“Some are more reluctant than others to accept immunization, but it is rare that an Amish person will cite a biblical text to object to a demonstrated medical need…” ….””If the Amish are slow to accept preventive measures, it doesn’t mean they religiously opposed to them…”

He might have made more than a cursory effort to contact people at the Clinic for Special Children in Strasburg, Pennsylvania. The Clinic, aside from serving special needs children (including autistics) runs vaccine clinics and has for some many years. In a piece explaining Mr. Olmsted’s failures, Mark Blaxill (also of the Age of Autism) explained that the Clinic did not return Mr. Olmsted’s phone call. No mention is given why Mr. Olmsted didn’t go to the clinic in his visits to Lancaster County

Had Mr. Olmsted done so, he would have known that this statement, again from his 2005 piece, was incorrect when he relied on a source who claimed a very low immunization rate:

That mother said a minority of younger Amish have begun getting their children vaccinated, though a local doctor who has treated thousands of Amish said the rate is still less than 1 percent.

He also made a misleading statement:

When German measles broke out among Amish in Pennsylvania in 1991, the CDC reported that just one of 51 pregnant women they studied had ever been vaccinated against it.

What is left vague in this statement was the fact that the 51 pregnant women were those who contracted German measles. Not surprising that those infected were largely unvaccinated. This doesn’t tell us what fraction of the whole population were vaccinated though, and is quite misleading.

One might wonder why Mr. Olmsted was not aware that the Amish participated in the eradication of Polio. Conversely, he might have questioned how polio was eradicated if the Amish did not vaccinate. Here is a March of Dimes photo from a 1959 vaccine clinic:


(from March of Dimes By David W. Rose, 2003)

An article available to Mr. Olmsted at the time of his 2005 article, Haemophilus influenzae Type b Disease Among Amish Children in Pennsylvania: Reasons for Persistent Disease, discussed the reasons why Amish parents did not vaccinate their children. While some did cite “religious or philosophical objections”, the majority said they would vaccinate if “vaccination were offered locally”:

Among Amish parents who did not vaccinate their children, only 25% (13 of 51) identified either religious or philosophical objections as a factor; 51% (26 of 51) reported that vaccinating was not a priority compared with other activities of daily life. Seventy-three percent (36 of 49) would vaccinate their children if vaccination were offered locally.

Since Mr. Olmsted’s original series, more data has come in refuting the “Amish Anomaly”. In 2006, a paper was published: Vaccination usage among an old-order Amish community in Illinois. Here is the abstract:

The Old-Order Amish have low rates of vaccination and are at increased risk for vaccine-preventable diseases. A written survey was mailed to all Amish households in the largest Amish community in Illinois inquiring about their vaccination status and that of their children. In this survey, the Amish do not universally reject vaccines, adequate vaccination coverage in Amish communities can be achieved, and Amish objections to vaccines might not be for religious reasons.

It is clear that the Amish do vaccinate and that it would have been simple for Mr. Olmsted to find accurate information about this at the time. It was certainly more difficult for Mr. Olmsted to ascertain what the prevalence of autism might be amongst the Amish. He made the assertion: ““there are only a few of them [autistic Amish] in the United States”.

Of the “few” Amish autistics Mr. Olmsted could find, six were being treated by Lawrence Leichtman. The children were unvaccinated but the doctor who reported them to Mr. Olmsted attributed their autism to high mercury levels. This is not surprising as Dr. Leichtman was one of the early alt-med practitioners working in autism, being part of the secretin fad of the 1990’s. One wonders if the “elevated mercury” levels in these children would stand up to tests performed by qualified medical toxicologists.

Another six autistic Amish, nearly under Mr. Olmsted’s nose at the time of his article, were being treated by the Clinic for Special Children in Lancaster, PA. Six children who had PDD or Autism were at that time being treated and written up for a study in the New England Journal of Medicine. They were missed by Mr. Olmsted. He has since argued that these children are syndromic and, thus, somehow not as relevant to his story. Those arguments aside, this was a clear miss for Mr. Olmsted.

In 2010, a study was presented at IMFAR: Prevalence Rates of Autism Spectrum Disorders Among the Old Order Amish

Preliminary data have identified the presence of ASD in the Amish community at a rate of approximately 1 in 271 children using standard ASD screening and diagnostic tools although some modifications may be in order. Further studies are underway to address the cultural norms and customs that may be playing a role in the reporting style of caregivers, as observed by the ADI. Accurate determination of the ASD phenotype in the Amish is a first step in the design of genetic studies of ASD in this population.

A preliminary number of 1 in 271 is a far cry from “little” or no autism amongst the Amish. Given the limitations of working within a community like the Amish, it is surprisingly close to the 1 in 100 often cited as the autism prevalence estimate for the general U.S. population. The study was being prepared for submission when I checked with the lead author last fall. It will be interesting to see what the final number is obtained for the prevalence.

The IMFAR abstract was available, I believe, before Dan Olmsted’s book, The Age of Autism, went to press. Instead of including this information, he chose to paint autism as rare amongst the Amish using quotes he obtained in 2005 and unsupported statements like, “the most aggressive possible count of autistic Amish comes to fewer than 20 cases, which would give us a rate of no more than 1 in 10,000.” It seems unlikely, given the low sales figures, that The Age of Autism will be reprinted. If that should happen, I wonder if Mr. Olmsted will correct this misinformation. The facts are clearly against him. Certainly, his review of internet sources and cursory tour of Lancaster County hardly counts as “aggressive”.

The “Amish don’t vaccinate and don’t have autism” idea was never very well supported. Now, with more data in, it is just plain wrong. It would be a good and honorable thing for Mr. Olmsted himself to make this clear. Good. Honorable. And not going to happen.

Reconsidering the Nature of Autism

8 Apr

Todd Drezner has a new piece up on the Huffington Post: Reconsidering the Nature of Autism. He starts out by quoting the forward to one of Jenny McCarthy’s books. The forward is by alternative medical practitioner Jerry Kartzinel.

Here is what Mr. Drezner wrote in his introduction:

“Autism … steals the soul from a child; then, if allowed, relentlessly sucks life’s marrow out of the family members, one by one.” So wrote Dr. Jerry Kartzinel in the introduction to Jenny McCarthy’s bestselling “Louder Than Words.” No wonder, then, that the concept of neurodiversity– the idea that we should understand and accept autistic people as a group that thinks differently from the majority — has proven to be so controversial.

The quote takes me back. Back to when I was starting to look online for information about autism. I remember when Jenny McCarthy hit the scene. Kev responded here with his blogging. The blog might have been kevleitch.co.uk then, not LeftBrainRightBrain. I remember that Kev’s blog went down: the traffic was so high that he hit his bandwidth quota. I remember that he responded to the forward from Jerry Kartzinel. He responded with words and, a little later, with video:

I don’t bring this up just for some sort of nostalgia. But this reminds me of two major themes. First: words hurt. What Dr. Kartzinel wrote, and Jenny McCarthy published, hurt. It hurt a lot of people. It added to the stigma of autism and disability. Second: words can be powerful. Kev fought back, as did many others. How or if this was an influence on Todd Drezner, I can’t say. It influenced me as I still remember it.

We can’t sit back and let people stigmatize others, for whatever reason they may have. Kim Wombles shows that almost every day with her blog Countering. Bev did it with a humor and keen perspective on Asperger Square 8. Corina Becker is taking up the task with No Stereotypes Here. And this is just a few of the many voices, autistic and non, out there.

Having said this, I will bring up one message that I’ve felt needed to be countered for some time. Here is a screenshot of a page from the book “the Age of Autism” by Dan Olmsted and Mark Blaxill. Both write for the Age of Autism Blog (Dan Olmsted appears to be the proprietor). Mark Blaxill is a member of the organization SafeMinds. Both promote the idea of autism as vaccine injury and, more specifically, the failed mercury hypothesis. (click to enlarge)

To pull but one disturbing quote: “As one of the first parents to observe an autistic child, Muncie learned how well autism targets ‘those functions distinctly human’ “. Yes, I have spent quite a lot of time fighting bad science like the first part in that sentence: the idea that autism is new/the kids in Kanner’s study were the first autistics ever. But what about the second part: that autistics are missing or have impaired “distinctly human” functions? Yes, I’ve also responded to that sentiment in the past and I plan to continue to do so. And that is much more important than the fight against bad science.

Words hurt. Jerry Kartzinel’s words hurt. Dan Olmsted and Mark Blaxill’s words hurt. They hurt and they are wrong. Plain and simple.

Another phrase from the above paragraph: “autism brutally restricts the interests of the affected”. So say the team that has one interest: pushing mercury in vaccines as a cause of autism. A little ironic?

Reading their writing, I am reminded of one of Bev’s amazing videos:

Back to the paragraph from “The Age of Autism”. Dan, Mark: You don’t think autistics made tools, explored the globe, invented new technologies? The sad thing is, it seems like you don’t.

Yeah, a lot of kids, kids like mine, aren’t in the world explorer/inventor categories. And even kids like mine are still as human as you or I. They are not missing anything “distinctly human”.