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A look at the “Garbage Can Quote” in full context

6 Jan

Last summer Representative Bill Posey read a statement in the House regarding William Thompson of the CDC. In it was a quote from a statement that quickly became known as the “garbage can quote”. The statement basically said that the CDC got rid of a number of documents related to one of their MMR studies, that William Thompson thought this was inappropriate, and that he had retained copies of the documents.

I obtained copies of the documents provided to Representative Posey’s office, posted them online and discussed them here at Left Brain/Right Brain.

Here is the “garbage can quote” as discussed at Emily Willingham’s column at Forbes.com last summer.

At the bottom of Table 7 it also shows that for the non-birth certificate sample, the adjusted race effect statistical significance was huge. All the authors and I met and decided sometime between August and September ’02 not to report any race effects for the paper. Sometime soon after the meeting, we decided to exclude reporting any race effects, the co-authors scheduled a meeting to destroy documents related to the study. The remaining four co-authors all met and brought a big garbage can into the meeting room and reviewed and went through all the hard copy documents that we had thought we should discard and put them in a huge garbage can. However, because I assumed it was illegal and would violate both FOIA and DOJ requests, I kept hard copies of all documents in my office and I retained all associated computer files. I believe we intentionally withheld controversial findings from the final draft of the Pediatrics paper

The statement in its entirety is in the package provided by Representative Posey’s office, so I was able to read it in context. Let’s take a quick look, shall we?

12. On June 28, 2002, all coauthors met and examined subgroup analyses by RACE for Whites and Blacks. (See page 17 in the Agendas Attachment and handout that includes Table 5).

13. In the Excel File named “describe_results_2002_0702.xls”, Table 7 shows the RACE analyses that I had run using ONLY the BIRTH CERTIFICATE Sample — the unadjusted RACE effect was statistically significant. (OR=1.51, [95%CI 1.02 – 2.24]). At the bottom of Table 7, it also shows that for the NON-BIRTH Certificate Sample, the adjusted RACE effect statistically significance was HUGE. (OR=2.94 [95%CI 1.48 – 5.81). That is the main reason why we decided to report the RACE effects for ONLY the BIRTH Certificate Sample.

14. In the Excel File named “describe_results_2002_0801.xls”, I split Table 7 into three different Tables (Table 7a, Table 7b, and Table 7c) to further investigate the RACE subgroup analyses.

15. All the coauthors met and decided sometime between August 2002 and September 2002 not to report any RACE effects for the paper.

16. Sometime soon after the meeting where we decided to exclude reporting any RACE effects, also between August 2002 and September 2002, the coauthors scheduled a meeting to destroy documents related to the study. Dr. Coleen Boyle was not present at the meeting even though she was involved in scheduling that meeting. The remaining 4 coauthors all met and brought a big garbage can into the meeting room and reviewed and went through all our hard copy documents that we thought we should discard and put them in the large garbage can. However, because I assumed this was illegal and would violate both FOIA laws and DOJ requests, I kept hard copies of all my documents in my office and I retained all the associated computer files. This included all the Word files (agendas and manuscript drafts), Excel files with analysis and results, and SAS files that I used to generate the statistical findings. I also kept all my written notes from meetings. All the associated MMR-Autism Study computer files have been retained on the Immunization Safety Office computer servers since the inception of the
study and they continue to reside there today.

Emphasis added to highlight text that appears to have been left out in the speech by Representative Posey.

Note that the last line in what was quoted by Representative Posey, “I believe we intentionally withheld controversial findings from the final draft of the Pediatrics paper”, was in the conclusion. Which was about 14 paragraphs after the rest of the text he quoted. I don’t think that is significant, but it’s worth noting.

I find a few things interesting in this. First, the omission of the sentence about Coleen Boyle (Dr. Coleen Boyle was not present at the meeting even though she was involved in scheduling that meeting.) Without that the paragraph reads as though Thompson was not present for the meeting. Instead, we now see that he was one of the “four remaining authors”. As such, why doesn’t he comment on the criteria for shredding documents? Second, it is very interesting that Coleen Boyle wasn’t there. Wakefield and Hooker have specifically targeted her in their attacks, and the fact that she wasn’t participating in this meeting goes against their narrative. If for no other reason that we don’t have any idea now what Ms. Boyle kept or didn’t keep.

A more important ommission, dare I say a significant omission: “All the associated MMR-Autism Study computer files have been retained on the Immunization Safety Office computer servers since the inception of the study and they continue to reside there today.”

Many people have claimed that the “garbage can” quote means that the data were deleted. Well, that’s not what Thompson said. It’s also a clearly false claim as Brian Hooker was able to obtain the data for his own version of the analysis. Here’s what Dan Olmsted of the Age of Autism blog had to say just a few days ago (he’s listing his “true” conspiracies) “The conspiracy by William Thompson and his colleagues dumping raw data into a wastebasket after they had twisted it into obscuring a link between the MMR and autism.”

It’s hard to dump raw computer data into a wastebasket, Dan. Delete, sure. Well, unless you are at a government lab that mandates backups of important raw data. Leaving that aside, data weren’t dumped. It appears that they discarded a huge amount of redundant paper based on what Thompson held on to. Most if not all of which could clearly be sent to a confidential shredder without any question of ethical lapse.

Another line of that statement also is of importance to note. Specifically because a lot of people are claiming that Thompson has said that the CDC team found that the MMR vaccine causes autism. He doesn’t:

The fact that we found a strong statistically significant finding among black males does not mean that there was a true association between the MMR vaccine and autism-like features in this subpopulation.

Emphasis added.

As to those who think I am skipping over the really important statements like “the adjusted race effect statistical significance was huge”. Let’s consider that a moment. One does adjustments, say with data from birth certificates, specifically in order to make sure that one doesn’t announce a possible association that is spurious. Beyond that, what Thompson doesn’t do is say, “here’s the scientific arguments that were given to not report this result and here is why I disagree.” Instead we are left to assume that the reason was to hide the result. If so, back it up. Where in his contemporary notes does he say, “they are doing this and it is wrong”. He says he’s not comfortable not presenting it, but he also says they all have “good intentions”.

But let’s get back to what the statement does say, rather than what it doesn’t.

Data were not deleted.

Even if the race effect isn’t considered spurious, it does not mean that there is a true association between the MMR and autism.

And some people are telling you that Thompson said the opposite.

Edit to add:

I am in no way suggesting that Representative Posey edited this statement to be manipulative. He may not have even been the one who wrote his statement in the House. But I do think that there is something to learn from the ommitted parts.

—
By Matt Carey

The William Thompson Documents. There’s no whistle to blow.

4 Jan

For those unfamiliar with the story of William Thompson, here’s a brief introduction. William Thompson is a CDC researcher who has worked on vaccine/autism studies. About 2 years ago he approached Brian Hooker (an autism parent and very vocal advocate for the idea that vaccines cause autism) stating that a statistically significant result was not only left out of an old study but that this represented not a scientific decision, but misconduct on the part of the CDC. It is worth noting that “statistically significant” is not the same as “proof of a connection”. Brian Hooker published his own analysis (incorrectly claimed as being the same as the CDC analysis method) in a now retracted paper. The result he presented was that there was an apparent increased risk of autism for one small subset of the study population: African American males, who were vaccinated not on schedule but before age 3.

There are some questions, of course, that this raises. Is this result very strong? Does the lack of inclusion in the paper represent scientific fraud or a legitimate scientific decision?

A few epidemiologists and other scientists have chimed in (for example here, here and here) and stated that the result was very likely spurious and that Hooker’s approach is somewhat flawed and definitely overplayed.

In fact, Brian Hooker’s paper was more of a publicity event than a scientific inquiry. When the paper was published, Brian Hooker and Andrew Wakefield released a video. It is difficult to describe just how bad this video was but here are a two examples. Wakefield tried to put forth the inflammatory claim that the CDC’s vaccine program was a new Tuskegee experiment. Which is to say that the CDC are intentionally allowing African Americans to become autistic due to vaccines as part of some sort of study. Second, according to Andrew Wakefield, the CDC team is so evil that they are worse than Hitler, Pol Pot and Stalin. =Mr Wakefield’s logic being that those dictators were sincere and the CDC team were not. No, really, Hitler was sincere per Wakefield.

In a series of phone calls between Thompson and Hooker (secretly taped by Hooker and released without Thompson’s permission), we find that Thompson was very interested in testifying before congress. It turns out that William Thompson kept much (if not all) of the paperwork involved in this study and, probably at least in part motivated by the hope for a hearing, passed these along to a member of Congress: Bill Posey. It has been claimed that this cache of documents numbers as many as 100,000 pages. Many have hoped that these documents will expose fraud by the CDC. (They don’t)

Congressman Posey released the documents to a journalist recently and, given that they are now in the public domain, Dorit Reiss and I requested that they be made available to us as well. Mr. Posey’s office graciously granted our request and I have spent some time going through them.

For those hoping for an exciting look into CDC malfeasance, sorry to disappoint you. Not only is it not present here, but these documents are very mundane and repetitive. Many people seem to think there will be evidence that the CDC are covering up. No “Vaccines cause autism! How do we cover this up”. Nothing like it. Wakefield and Hooker have already cherry picked–and misrepresented–whatever they could to “best” make their case.

For more introduction, I point you to these articles as a start:

MMR, the CDC and Brian Hooker: A Guide for Parents and the Media

Did a high ranking whistleblower really reveal that the CDC covered up proof that vaccines cause autism in African-American boys?
The “CDC whistleblower saga”: Updates, backlash, and (I hope) a wrap-up
Brian Hooker and Andrew Wakefield accuse the CDC of scientific fraud. Irony meters everywhere explode.

Given that long introduction, what is in the documents? Well, there’s about 1000 pages, not the claimed 100,000. Documents provided by Mr. Thompson and, also, documents that submitted as part of the complaint that Wakefield and Hooker filed with HHS were included in the zip file. Which is convenient as I had submitted a FOIA request for those.

There are multiple drafts of the analysis plan. Analysis Plan is the same thing as the “protocol” that Wakefield and Hooker claim was changed after the first race data were analyzed. And the fact that we have the revisions gives us the chance to check two of the fundamental claims behind the Wakefield/Hooker “fraud” charge against CDC. (1) Did the CDC plan to look at race as an exposure variable? Wakefield and Hooker are claiming (although they use different words) this is what the CDC was doing. This is different from using race as a control variable. (2) Did CDC add the birth certificate analysis after the first race analysis was done, in order to dilute the effect?

No. Very clearly no. I’ve covered (2) already based on information Wakefield and Hooker made available. The final analysis plan was dated Sept.5, the first race analysis wasn’t until late October or early November. And we see the same in these documents.

But now we have new information that answers (1). Here is what appears to be the first draft of the analysis plan. And here is a capture of a very important part:

First Draft Analysis plan segment 1

Note that this draft analysis plan is from April 3, 2001. Well before the final version, the “protocol”, which was September 5. More importantly, this is a long time before a race analysis was started. But even more, notice how there’s an annotation “I would include race as a covariate, not as an exposure variable.” That’s critical–they decided against using race as an exposure variable from the start. Before they did a race analysis. Another point: they were already planning on using birth certificate data right from the start.

William Thompson certainly should have known this, it’s very probable that he did know this. Wakefield and Hooker likely knew this. They showed documents from this collection in their video and elsewhere. But they told us the opposite.

Whether they knew or not, they were wrong. Wildly irresponsibly wrong.

Ever wonder why they didn’t make documents public? We can’t tell if Hooker and Wakefield had all the Thompson documents, but we know they had some. While they cry out for transparency, they were carefully guarding information in order to craft the story they wanted told. The full documents tell a different story.

Let me put this more simply: if Wakefield and Hooker worked for me they would be fired for just their handling of the Thompson story (of course, they would have been fired years ago for many other causes, but promoting this sort of misinformation is simply wrong.)

Also in that same directory appears to be the first draft of the paper (A000071.PDF), with William Thompson as first author. I find it interesting that Thompson is first author there as later it would be Frank DeStefano who would be first author of the published study.

There are also meeting notes. Lots of meeting notes. Here’s the first batch, as near as I can tell. Meetings were held every month or two.

Now is a good time to address the “garbage can” quote. Congressman Posey read a statement from William Thompson into the congressional record. Emily Willingham discussed this in A Congressman, A CDC Whisteblower And An Autism Tempest In A Trashcan. On the other side, here’s an article by Jon Rappoport Bombshell: CDC destroyed vaccine documents, Congressman reveals Bombshell: CDC destroyed vaccine documents, Congressman reveals; CDC whistleblower case is back.

Here’s the thing–there’s zero “bombshell” involved in putting these documents into a confidential bin for shredding/recycling. There’s no reason to keep all these revisions of the analysis plan, all these meeting notes, all this redundant material. I hope people at CDC are not keeping all this paper. Beyond that, the rules are that they have to keep enough information to recreate the study. Aside from the fact that all these meeting notes are not required for that, Brian Hooker proved that requirement was met when he claimed to have done exactly that–recreated the study.

Mr. Thompson also provided a file with ALL Agendas for mmr autism meetings with written interpretation. Which is to say Thompson added his own annotations (purple pen) to the agendas.

Here’s an example of his annotations. And a great example of trying to make data fit a story. Thompson appears to be trying to support the idea that the CDC team changed the protocol to include the birth certificate analysis in response to analyzing the race data:

Race examined before final protocol

The implication that the race analysis and had somehow influenced the final protocol (as Wakefield and Hooker have claimed and this comment appears to support) is just plain wrong. First, as we have already seen, the birth certificate analysis was included from first draft of the analysis plan, in April 2001. That’s four months before this meeting note. Second, the so-called “race effect” isn’t seen in this meeting note. In fact, we see the opposite: “not statistically associated with case/control variable”.

From the phone conversations between Brian Hooker and William Thompson (secretly taped by Hooker), we have found that Thompson was very interested in participating in a congressional hearing. Hooker and his colleagues had been involved in arranging a previous congressional hearing on autism. Frankly it appears to me as though Thompson was involved in a bit of a quid pro quo: Thompson coaching Hooker in ways to spread fear about vaccines in exchange for a chance to be involved in a hearing. Which begs the question: why no hearing based on all that Thompson has laid out?

In case it isn’t already abundantly clear: there’s no hearing because there is no reason for a hearing. There’s no evidence of fraud. Many of the reasons given by Wakefield and Hooker to call this fraud are, well, just flat out wrong. Contradicted by the evidence. For those hoping that Thompson’s personal notes would show some evidence of a cover up, here they are mmr autism study 2001-2002 hand written notes.

Ah, one will say, what about the finding of an association between the MMR and autism for African American boys vaccinated late (between 18 months and 36 months)? Why wasn’t that included in the published paper or public presentations? The reasons given by Thompson/Hooker/Wakefield don’t hold water as I’ve shown. So, what was the scientific reason for not including this result in the paper? Many online writers have discussed how weak this result is; how it is a spurious result. But I’d like to know the reasoning at the time behind the CDC decision to leave this out. As a community member–an autism parent–I’d like to see all the results and understand the reasons why certain results are spurious. Of course it is easy to say now, but leaving this out of the public’s eye was a mistake. It gave Thompson, Hooker and Wakefield the chance to cherry pick, hide information and craft a story that has been very damaging to the autism communities and to public health.

The first thing I did when I heard about this story was email a few epidemiologists I know and point this story out and ask them if they had the data to address the question raised. I no longer feel this way. Why should the autism communities spend precious funds and researcher time every time Andrew Wakefield (Time Magazine’s #1 on their list of great science frauds) comes up with a new story? Especially now that we know the story was built on lies. But consider this: Wakefield and Hooker have not been calling for more research. Instead they are calling for a congressional hearing. If you watched any part of the previous hearings you know they are political theater and have done nothing (NOTHING) to help make a better life for autistics. They have done nothing except provide video and blog fodder for those promoting the failed idea that vaccines cause autism.

Also, consider this: before Thompson Wakefield and Hooker didn’t talk about the issues of racial/ethnic minorities. For the most part, the entire “autism is caused by vaccines” community have ignored minority communities. Why? Because they are a clear example that the vaccine hypothesis is a failure. Prevalence estimates for racial/ethnic minority groups have been typically much lower than for Caucasians (Hispanics are diagnosed at a rate of 1/3 that of Caucasians in California. And this has been consistent for over 10 years.) This presents a huge problem for the likes of Hooker and Wakefield. If vaccines are a major cause of autism, why do minority groups have such low prevalences? If they were honest about their own beliefs, they would be calling for a study into the “protective” effect for minorities. But they don’t. More importantly, if they were real autism advocates they would be calling for better diagnosis, better awareness, better services for these under served communities. Instead they have just ignored these minority communities. That is, until they could use them as part of their campaign against vaccines.

And they still aren’t calling for better services better diagnosis in these underserved groups. Instead they are just trying to recruit as many parents as they into the vaccines-cause-autism camp. Imagine being convinced, wrongly, that you participated in injuring your own child. The charlatans who prey on our community with fake–and sometimes abusive–therapies rely on the vaccine/autism idea for the majority of their business.

The vaccines-cause-autism story is built on lies and it is very damaging. There has been nothing since the Kanner/Bettleheim “refrigerator parent” idea that has caused so much damage to our community. And that is the real story here. A group of people perpetuating a failed idea by carefully crafting a story.

The Zip file provided to me by Representative Posey’s office is at this DropBox link
https://www.dropbox.com/sh/jxtr06s5ddc82s7/AADaZvp7yu_daBhbuZwMfQy4a?dl=0

Again, I am grateful to Representative Posey and his staff for providing these files to me.

—
By Matt Carey

The IACC will meet in January: submit comments now!

14 Dec

Below is a meeting announcement for the U.S. Interagency Autism Coordinating Committee (IACC).

Now would be a great time to submit a written comment to IACCpublicinquiries@mail.nih.gov

As a former member of the IACC I can tell you that comments are read and considered seriously.  I can also tell you that the groups pushing the idea that vaccines cause autism do a good job of submitting comments.  There’s a lot of work to be done with the new IACC.  The Strategic Plan needs to be rewritten.  Now is when your input can have a big impact.

Meeting of the Interagency Autism CoordinatingCommittee

Please join us for an IACC Full Committee meeting that will take place on Tuesday, January 12, 2016 from 9:00 a.m. to 5:00 p.m. ET at the National Institutes of Health, 31 Center Drive, Building 31, C Wing, 6thFloor, Conference Room 6, Bethesda, MD 20892. Registration will begin at 8:00a.m. The meeting will also be available by live webcast and conference call.

Agenda: To discuss business, updates and issues related to ASD research and services activities. The committee will discuss the next update of the IACC Strategic Plan.

Meeting location:
National Institutes of Health

31 Center Drive

Building 31, C Wing, 6th Floor, Conference Room 6

Bethesda, MD 2089

Nearest Metro stop:

Medical Center Drive Metro Station – Red Line

 

In the interest of security, NIH has instituted stringent procedures for entrance onto the NIH campus. All visitor vehicles, including taxicabs, hotel, and airport shuttles will be inspected before being allowed on campus. Visitors will be asked to show one form of identification (for example, a government-issued photo ID, driver’s license, or passport) and to state the purpose of their visit. Also as a part of security procedures, attendees should be prepared to present a photo ID at the meeting registration desk during the check-in process. Pre-registration is recommended.

 

Pre-Registration:

The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered. Online registration will be opening shortly. Please check the IACC website for updates.

 

Public Comment – Deadlines:

Notification of intent to present oral comments: Monday, January 4th by 5:00p.m. ET

Submission of written/electronic statement for oral comments: Tuesday, January 5th by 5:00p.m. ET

Submission of written comments: Tuesday, January 5th by 5:00p.m. ET

 

Remote Access:

The meeting will be remotely accessible by videocast  (http://videocast.nih.gov/) and conference call.  Members of the public who participate using the conference call phone number will be in listen-only mode.
Conference Call Access
USA/Canada Phone Number: 800-988-9744
Access code: 3700810

 

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed below at least five days prior to the meeting. If you experience any technical problems with the conference call, please e-mail at helpdeskiacc@gmail.com or call the IACC Technical Support Help Line at 415-652-8023.

 

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda, materials and information about prior IACC events.

 

Contact Person for this meeting is:

 

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 6182A
Rockville, MD 20852
Phone: 301-443-6040
E-mail: IACCpublicinquiries@mail.nih.gov

Protests/Rallies in California–Tomorrow! Help support our developmental disabilities system.

9 Dec

We are facing a crisis here in California. Support for the developmental disabilities services system has dwindled, eroded. This year we were pushing for a reinstatement of lost funding levels but lost out in a budget deal. It’s not like funding levels have ever been sufficient, but they are now even lower.

Tomorrow protests will be held to inform our legislators that we need to keep the promise made by the Lanterman Act. If you can attend one, please do so. If you can’t, contact your state legislators and bring this event to their attention.

The message below is taken from an email sent out by The ARC of California.

Help us make Thursday unforgettable and help us all keep the pressure on the policymakers in our state.

WE’RE (STILL) HERE TO SPEAK FOR JUSTICE & KEEP THE LANTERMAN

PROMISE MARCH TO THE CAPITOL; PROTEST ON THE NORTH STEPS
Thursday, December 10, 2015
Gather at Raley Field 9:30 – 10:30 am
March to the Capitol 10:30 – 11:00 am
Meet at North Steps 11:00
Protest North Steps of Capitol 11:00 – 1:00 pm
Protest at Governor’s Mansion 1:00 – 2:00 pm
The developmental services community has endured a decade of rate cuts and freezes. We are a community that is falling apart. The Governor can no longer
ignore us. We need help now!

#KeepthePromise #Speak4Justice

WE’RE (STILL) HERE TO SPEAK FOR JUSTICE & KEEP THE LANTERMAN PROMISE:

Starting at 9:30 am we’ll start meeting at the Raley Field baseball parking lot leaving at 10:30 am for a march to the North Steps of the Capitol. By about 11 am we’ll begin to gather at the capitol for speeches and inspiration. The speakers will begin with Ari Ne’eman founding director of ASAN, will kick off the event, self-advocates, families, and DSPs will be the primary speakers of the rally.
If you can’t make it to Sacramento check out one of these local events:
Berkeley – Ed Roberts Campus, 3075 Adeline St, Berkeley, CA 94703, 10:30AM-1:30PM. Bring protest signs & loud noise makers!
San Diego – Speaker of the House Assembly Member Toni Atkins office, 1350 Front St., Room 6054, San Diego, CA 92101, 11:00AM.
Bakersfield – LIBERTY BELL on Truxtun AVE at 10:00am,
Lancaster – Desert Haven Enterprises, Inc., 43437 Copeland Circle, Lancaster, 1:30 pm.
Redding -Redding (Protest organized by Sadie Hess from Compass, no details at this time. Contact email: shess@compasscares.com.

to the people at the Inland Regional Center–you have our support and sympathy

2 Dec

News out today is that a mass shooting has occurred here in the U.S.. This time it is in California and, specifically, at the Inland Regional Center. The Regional Centers are the sites that manage services for the developmentally disabled here in California.

There are mixed reports, including one that the people targeted in this shooting were not affiliated with the Regional Center. Whatever the case, people working at the Regional Centers are heroes every day here. They are the people struggling to keep our underfunded and broken disability services program running. People with disabilities and their families are also present at regional centers for meetings and more.

For those victims of the shooting and their families, I wish I could offer more than this: you have our support and our sympathy.

—
By Matt Carey

Comment on study: Early exposure to the combined measles-mumps-rubella vaccine and thimerosal-containing vaccines and risk of autism spectrum disorder

23 Nov

Missed this one from earlier this year. A study that looked at both MMR uptake and thimerosal exposure from infant vaccines. Guess what? “No convincing evidence was found in this study that MMR vaccination and increasing thimerosal dose were associated with an increased risk of ASD onset”

Again.

The abstract is below.

Why do I suspect that this is not included on “vaccine information” websites like the so-called “National Vaccine Information Center”, or “Dr. Bob’s” new site? Oh, because it doesn’t scare parents about vaccines, that’s why. And they can’t even blame the CDC or drug manufacturers for putting out a biased study (well, they can, they will, because they always do).

This study was done by Japanese academics. I’m sure some connection to Big Pharma will be produced to discount the fact that this study tells us what every other actual study on MMR and thimerosal and autism has said.

Early exposure to the combined measles-mumps-rubella vaccine and thimerosal-containing vaccines and risk of autism spectrum disorder.
Uno Y1, Uchiyama T2, Kurosawa M3, Aleksic B4, Ozaki N5.
Author information
Abstract
OBJECTIVE:
This case-control study investigated the relationship between the risk of Autism Spectrum Disorder (ASD) onset, and early exposure to the combined Measles-Mumps-Rubella (MMR) vaccine and thimerosal consumption measured from vaccinations in the highly genetically homogenous Japanese population.

METHODS:
Vaccination histories at 1, 3, 6, 12, 18, 24, and 36 months from birth were investigated in ASD cases (189 samples), and controls (224 samples) matching age and sex in each case. Crude odds ratios (ORs) and 95% confidence intervals (95% CIs) were calculated to determine relationship between MMR vaccination and ASD. The differences in mean values of the thimerosal dosage between cases and controls were analyzed using an unpaired t-test. MMR vaccination and thimerosal dosage were also investigated using a conditional multiple-regression model.

RESULTS:
There were no significant differences in MMR vaccination and thimerosal dosage between cases and controls at any age. Furthermore, the ORs (95% CIs) of MMR vaccination and thimerosal dosage associated with ASD in the conditional multiple regression model were, respectively, 0.875 (0.345-2.222) and 1.205 (0.862-1.683) at age 18 months, 0.724 (0.421-1.243) and 1.343 (0.997-1.808) at 24 months, and 1.040 (0.648-1.668) and 0.844 (0.632-1.128) at 36 months. Thus, there were no significant differences.

CONCLUSIONS:
No convincing evidence was found in this study that MMR vaccination and increasing thimerosal dose were associated with an increased risk of ASD onset.

Copyright © 2014 Elsevier Ltd. All rights reserved.

KEYWORDS:
Autism Spectrum Disorder; Case–control study; Environmental factors; Measles–Mumps–Rubella vaccine; Risk factor; Thimerosal

—
By Matt Carey

So, you supposed champions of autistic minorities, why aren’t you commenting on the new autism prevalence report?

17 Nov

One of the first things I check when I see a new study on autism prevalence is how the prevalence varies among racial and ethnic sub populations. In the U.S., this usually means comparing autism rates among Caucasians to that among African Americans and Hispanics (the most reported minority groups). I am especially interested given that in the past year the groups that promote the failed notion that autism is a vaccine-induced-epidemic have tried to position themselves as champions of the African American community.

So with the new autism prevalence study out, I decided to check on what these various “champions” are saying. I look specifically because the reported autism prevalence estimate is slightly lower among African Americans and much lower among Hispanics.

AutPrevalence race-ethnicity

In case you want the conclusion–few of these groups seem to have even read the new study, and none of them have anything to say about the disparities among racial/ethnic communities.

And this is a shame. Under diagnosis means under-served autistics. It means autistics likely getting the wrong supports.

Here’s a non scientific survey of various groups and their reactions to the new autism prevalence study:

The Age of Autism blog has New Estimate 1 in 45 American Children Have Autism. There’s no evidence that whoever put this article up actually bothered to read the CDC report. Much less comment on the racial disparity reported.

This should shock Americans for two reasons. One, the sheer epidemic numbers of this life and demographic landscape altering diagnosis is appalling and unacceptable. Two, the CDC continues to prove its inability to keep track of American medical conditions and provide any measure of protection. Like school shootings, autism has continued to rage across the nation unabated. Cui bono? Not families. Not the children, many of whom are now young adults.

The article is just listed as “Posted by Age of Autism” but the wording is very characteristic of Kim Stagliano. Likening autism to schoo shootings that continue “to rage across the nation unabated” is very much in her style. It’s not a style I appreciate. My child is not like a school shooting, thank you very much Age of Autism, and you are doing zero to help and much to harm my child’s chances for a better life with your stigmatizing approach.

Focus for Health (formerly Focus Vaccines), the organization that funded the Brian Hooker “reanalysis” of the CDC data and the media campaign to try to create a controversy around the so-called link between the MMR and autism in African American boys? They have a confusing article “Do vaccines cause autism?” which doesn’t address the question of race/ethnicity at all.

“Dr. Bob” Sears, who recently claimed to speak for all autistic students in California posted a link to a TACA (Talk about Curing Autism) blog article. TACA gives little indication that they read he CDC study beyond the one number, and doesn’t address racial/ethnic disparities at all. The TACA article is titled Autism is now 1 in 45 – will anyone listen?. Hey, Lisa Akerman–Autism is STILL under diagnosed in the Hispanic community. When will you listen? And, “Dr. Bob”, gee thanks for cutting and pasting a link to someone else’s blog post. That’s going to make a change in our community. And by “our” I don’t include you.

Andrew Wakefield’s “Autism Media Channel” copied a link to an NBC article about the new study. Nothing more. Wakefield and his Autism Media Channel were the primary force in promoting the supposed controversy about the MMR vaccine and African American boys. Well, the autism prevalence is slightly lower in African Americans, Wakefield. And much lower in Hispanics. Do you care?

The self-named (and inaccurately named) National Vaccine Information Center is another group that only put a link to someone else on their facebook page. And, you guessed it, nothing about race/ethinic groups.

I don’t see anything on the Generation Rescue blog, but a short blurb on their Facebook page that, again, looks like they didn’t even read the study. Much less comment on under served communities.

OK, basically nothing so far. Let’s look at some of the smaller players in the vaccines-cause-autism arena. Like the “Thinking Mom’s Revolution”. Nothing on their Facebook page or their blog that I can see about the new prevalence numbers. So, naturally, nothing about under served communities. They do have a few FB posts asking people to take a survey (because an online survey only advertised to a skewed demographic is accurate, right?). The survey is calling asking if people want a congressional hearing on vaccines.

—
By Matt Carey

U.S. announces 2% autism rate. Again. And it’s dependent on a change in the way a survey is worded. Again.

17 Nov

Last week a study was released showing an autism “rate” in the U.S. of about 2% (an estimated prevalence of 2.24% to be exact). Luckily one of the best science journalists out there focuses a lot of her attention on autism and covered this story. I’m writing of course about Emily Willingham and her article Increase In Autism Diagnoses Not An Increase In Autism.

The study in question is Estimated Prevalence of Autism and Other Developmental Disabilities Following Questionnaire Changes in the 2014 National Health Interview Survey. The abstract is at the bottom for those interested.

While other articles are discussing the large “increase in autism”. Or, as in this Reuters article, US autism numbers soar in which we read what must be a confusing message to many:

The results reflect a near doubling in autism rates over the past three years, but the US Centers for Disease Control, which released the data last week, says the shift is largely due to a change in the way the survey was worded.

Here’s the thing, before I saw what the study was, I actually thought that the discussion was about this study: Changes in Prevalence of Parent-reported Autism Spectrum Disorder in School-aged U.S. Children: 2007 to 2011–2012. In that study, released in 2013, a 2% autism “rate” was announced. And that was a significant change from the previous survey data (using the National Survey of Children’s Health). And like previous estimates based on survey’s the change is at least due in large part to a change in the way the survey was presented to parents (I’m looking for a link to the discussion of the change in survey questions that affected the 2013 estimate, but there was a shift and it had a big impact).

Thankfully much of the media, and even Autism Speaks, are pointing out how this 2% figure doesn’t represent a “real” change in autism prevalence, but is largely dependent on the study methods. Others can be counted on to shout “epidemic” and ignore some of the key reasons why this doesn’t reflect a real increase.

Number 1 reason–the autism prevalence is basically the same for kids who were 3-10 and kids who were 11-17:

AutPrevalence

A real increase would show up as a higher prevalence for younger kids.

One thing we see is a decrease in disparity for autism prevalence by race/ethnicity. African Americans have a slightly lower autism prevalence (it’s unclear whether this is statistically significant or not), and Hispanics have a decidedly lower autism prevalence (1.49% vs. 2.55% for Caucasians). Which means we still have far to go to identify and bring services to all autistics. And it also means that the autism prevalence estimates will continue to rise as we do identify more in under diagnosed populations.

AutPrevalence race-ethnicity

But let’s focus on the important part of that–we still have a large under-diagnosed/under-served population and it is largely among Hispanics. We really need to be focusing more attention on remedying that situation.

Here is the abstract for the current study:

Objectives—The developmental disabilities questions in the 2014 National Health Interview Survey (NHIS) were changed from previous years, including
question reordering and a new approach to asking about autism spectrum disorder (ASD). This report examines survey-based estimates of the lifetime
prevalence of ASD, intellectual disability (ID), and any other developmental delay (other DD) following the inclusion of a standalone ASD question, the
inclusion of specific diagnoses in the ASD question, and the ASD question preceding the other DD question, and compares them with estimates from
previous years.

Methods—In NHIS, one child is randomly selected from each family to be the subject of detailed questions on health conditions, functional limitations, and
health care utilization. Parents are asked if a doctor or health professional had ever told them that their child had each of a series of developmental disabilities.
Prevalence estimates of ASD, ID, and other DD for children aged 3–17 years were calculated using data collected in 2011–2014.

Results—The estimated prevalence of ASD based on 2014 data was 2.24%, a significant increase from the estimated annualized prevalence of 1.25% based on
2011–2013 data. In contrast, the prevalence of other DD declined significantly from 4.84% based on 2011–2013 data to 3.57% based on 2014 data. The prevalence of ID did not significantly change from 2011–2013 (1.27%) to 2014 (1.10%). The prevalence of having any of the three conditions was constant across survey years.

Conclusions—The revised question ordering and new approach to asking about developmental disabilities in the 2014 NHIS likely affected the prevalence estimates of these conditions. In previous years, it is likely that some parents of children diagnosed with ASD reported this developmental disability as other DD instead of, or in addition to, ASD. Following these changes, the 2014 ASD estimate was more similar to ASD prevalence estimates from other sources.

—
By Matt Carey

Mr. Kennedy, if you know the science, why did you claim that the MMR vaccine contains mercury?

16 Nov

Robert Kennedy (son of Robert F. Kennedy) has been focused on reducing mercury exposure for some time. His advocacy against mercury led him to focus on vaccines (infant vaccines used to contain a mercury compound as a preservative). And, the main argument against mercury in vaccines is the (now totally failed) idea that mercury in vaccines causes autism.

It’s important to keep that autism is not his priority. It’s his tool to allege dangers of vaccines. He’s not out to help us out, but instead to use us to help him.

Add to this that he’s a lawyer, not a scientist and he’s from a very political family. Three are lawyers and politicians actually understand science. Mr Kennedy claims he is in that number (he’s “rabidly pro-science”), but in reality he either doesn’t understand the science or the facts are just be a political tool for him.

That Mr. Kennedy feels the need to instill in us the message that he understands science may stem from the fact that his first attempt at discussing autism and vaccines met with disaster. He published an article “deadly immunity” (because, you know, very pro-vaccine people use terms like “deadly immunity” to discuss vaccines, right?). This article was published both in Rolling Stone and Salon.com. In Salon’s Correcting our record, We’ve removed an explosive 2005 report by Robert F. Kennedy Jr. about autism and vaccines. Here’s why we read:

In 2005, Salon published online an exclusive story by Robert F. Kennedy Jr. that offered an explosive premise: that the mercury-based thimerosal compound present in vaccines until 2001 was dangerous, and that he was “convinced that the link between thimerosal and the epidemic of childhood neurological disorders is real.”

The piece was co-published with Rolling Stone magazine — they fact-checked it and published it in print; we posted it online. In the days after running “Deadly Immunity,” we amended the story with five corrections (which can still be found logged here) that went far in undermining Kennedy’s exposé. At the time, we felt that correcting the piece — and keeping it on the site, in the spirit of transparency — was the best way to operate. But subsequent critics, including most recently, Seth Mnookin in his book “The Panic Virus,” further eroded any faith we had in the story’s value. We’ve grown to believe the best reader service is to delete the piece entirely.

“I regret we didn’t move on this more quickly, as evidence continued to emerge debunking the vaccines and autism link,” says former Salon editor in chief Joan Walsh, now editor at large. “But continued revelations of the flaws and even fraud tainting the science behind the connection make taking down the story the right thing to do.” The story’s original URL now links to our autism topics page, which we believe now offers a strong record of clear thinking and skeptical coverage we’re proud of — including the critical pursuit of others who continue to propagate the debunked, and dangerous, autism-vaccine link.

“…critical pursuit of others who continue to propagate the debunked, and dangerous, autism-vaccine link”. Not exactly a ringing endorsement of Mr. Kennedy’s approach nor the “science” he still promotes.

One take a moment here to discuss Mr. Kennedy’s strong record of advocating for real changes that would benefit autistics. Or we could if there were such a record. Again, we aren’t his focus. We are his tool.

So, given this long introduction, what about the claim that that the MMR vaccine contains mercury? It is in this video Mr. Kennedy produced recently. And while it may seem like a small thing, it is a clear example of misunderstanding or ignoring simple facts in order to support his argument that mercury in vaccines cause autism. Mr. Kennedy is jumping on the controversy that Brian Hooker and Andrew Wakefield tried to make last year about the MMR vaccine.

Now for those who have a basic understanding of the science, one will immediately wonder, “why is Kennedy latching on to this MMR story when there is no mercury in the MMR vaccine?” Not only does the MMR vaccine not contain mercury, it can’t contain mercury. The MMR vaccine is a live virus vaccine. Mercury is a preservative; it’s specific purpose is to kill bacteria (mostly) and viruses.

Let’s leave out the other huge warning flags here–such as the current MMR controversy Wakefield and Hooker tried to create is based on a huge amount of misrepresentations. Let’s ignore that and ask, surely Mr. Kennedy wouldn’t claim that the MMR vaccine contains mercury, right? Because that would mean either he doesn’t care about the facts or doesn’t understand the facts. It would suggest that sticking to very simple facts is taking back seat to political advocacy.

Why care, one might ask? Politicians have been ignoring facts for millennia. I care beause of the harm Mr. Kennedy brings to my community. I care because he is be scaring parents, especially African American parents, needlessly and convincing them to avoid a vaccine which prevents three very serious diseases. But more, he’s instilling in a new community the guilt and shame that comes with belief in the vaccines-cause-autism idea.

Given that long intro, here’s the video where Mr. Kennedy sends out his message to the African American community:

You can jump right to the point I’m discussing (6:45 into the video).

“…it proved that these vaccines, these mercury containing vaccines particularly, were causing autism”

When he’s talking about the William Thompson story, he’s talking about this study, Age at first measles-mumps-rubella vaccination in children with autism and school-matched control subjects: a population-based study in metropolitan atlanta. He’s talking about the MMR vaccine.

Again, the MMR doesn’t contain mercury. Never has. In fact, it can’t. And there’s no good reason why after all these years why Mr. Kennedy would not know this. In his book “Thimerosal, let the science speak”, Mr. Kennedy on two occasions (Kennedy MMR-not thimerosal 1 and Kennedy MMR-not thimerosal 1) notes that the MMR vaccine does not contain mercury.

Again, this may seem like a small thing–he got this fact wrong. So what?

There was a time when I thought that the leaders of the movements that promote the idea that vaccines cause autism were just misguided. Probably good, decent people who somehow got themselves to believe wrong ideas. It’s not that hard to believe in something false, and just because you are wrong doesn’t mean you are lying.

Well, in my opinion, that doesn’t describe Mr. Kennedy. And as I’ve noted, the consequences for my community are huge. And I don’t appreciate Mr. Kennedy what appears to be Mr. Kennedy using us as his tool.

—
By Matt Carey

Was the murder of Dustin Hicks committed by a biomed mom?

10 Nov

Let me start with some resources. Shannon Rosa of the Thinking Person’s Guide to Autism have done a good job in writing about resources for families. In particular, Parenting Kids With Disabilities: How to Get Through Tough Times. There are other resources out there as well. As Shannon wrote in a recent Facebook comment

Again: The solution **for this situation** is to spread the message that killing disabled people is unacceptable, and that parents have other choices. Here are some of those choices: http://www.blogher.com/parenting-kids-disabilities-through-toughest-times -SR

Also, the Autistic Self Advocacy Network (ASAN) has an effort to stop such murders. One can find information about that at their Anti-Filicide Toolkit page.

With that long introduction, here’s the main article:

Recently I posted news here about another murder/suicide. The autistic youth, the victim, was Dustin Hicks. Usually when I write these stories I leave out the name of the mother. I do because many news stories focus on the mother, even to the point of not naming the victim. Consider yesterday’s news where they asked if this was a mercy killing. A possible mercy killing?

Dustin Hicks’ mother was named Nina Hicks. They lived in Georgia.

As it turns out, there was a mom in Georgia named Nina Hicks who also listed herself as “Dustin’s Mom” in online discussions. As one can see in the signature in this post left to the “open Georgia Autism Group”. On this list, we see that she is a proponent of so-called “biomedical” intervention approach. Here we see her promoting the Amy Yasko “protocol” (which, by the way, is nonsense):

I would also highly recommend your looking into the genetic testing offered by Dr. Amy Yasko. It takes a lot of the guess work out of biomedical interventions and addresses the underlying reasons why your kiddo cannot excrete toxins like his typically developing peers can. You can find info regarding the Yasko protocol on the two sites I’ve listed above. It’s a little extra $$ up front, but it will save lots of (precious) time and $$$ overall.

She appears to have petitioned on behalf of her son for compensation in the vaccine court (Court of Federal Claims). The decision states that the mother did not provide any medical opinion or medical record that autism was a vaccine injury. Simply put, she didn’t really put forth a case.

One might ask why bring all this up?

Because the culture that goes with the alternative-to-medicine approach and the vaccines-cause-autism movement is toxic. Yes, I know these groups feel some sort of ownership over the word “toxic” and will feel that it’s ironic that I use it here. But their culture has very toxic elements. Let me explain. Because this is exactly what many of us have been fighting against. And the murder of Dustin Hicks is exactly the sort of event we have tried to prevent.

First we have the toxic message, “your child is damaged. You did this by vaccinating him/her. Now it’s your job to fix him/her.” Think I’m exaggerating? Take a look at the introduction to Jenny McCarthy’s first autism book, “louder than words”. The introduction was written by DAN (Defeat Autism Now!) doctor Jerry Kartzinel:

“You broke him, now you fix him!” was the mandate given to me by my wife as we watched our fourth boy slip into the world of autism after receiving his first measles, mumps, andrubella (MMR) vaccine.

Further in the introduction, we read:

Autism, as I see it, steals the soul from the child; then, if allowed, relentlessly sucks life’s marrow out of the family members, one by one.

Let’s break this down. First we get the message that autistics are less than they should be. They are damaged. And not only are they damaged, but autism also destroys their loved ones. Allow autism to go unchecked and you are allowing this damage into your family.

So, “fix him!”. The goal of a parent is to try anything, tested or untested (mostly untested), with a demonstrated safety or (more often) not.

And while not in the above quote, “the clock is ticking”. You as a parent have only a short time before your child will forever be this source of sucking life’s marrow out of everyone around him/her.

Yes, that’s a toxic message. And yes, that plays into pushing some people over the edge. Did it push Dustin Hicks’ mother over? We can’t tell for sure. Did it push others? Yes. Consider Katie McCarron’s mother. She killed Katie because Katie was autistic and wasn’t on a path to being non-autistic. Who cared that Katie was a beautiful child with a future? Well, a lot of people. Her father. Her grandparents, just to name a few. But that wasn’t enough for her mother.

Let’s look for another source of the toxic message of the autism-is-vaccine-injury community. Here’s part of the introduction to Dr. Bob Sears’ “The Autism Book”, titled ironically “an encouraging word”. It begins:

Autism has become one of the most widespread childhoold epidemics in recorded history. Except for some infectious disease epidemics of the past, no other serious condition has ever affected so many of our children.”

He goes on later in that paragraph,

“What makes it so devastating for parents is that autism can strike unexpectedly, seemingly out of nowhere; a healthy and neurologically normal infant can suddenly regress into autism, between ages one and two.”

Where’s the encouraging message? We get the “devastating” and “epidemic” messages. What’s encouraging about that? Well, having sewn despair and fear, Dr. Bob offers encouragement in his book of untested (for either efficacy or safety) treatments based on either disproved or just bad ideas of what autism is.

And, again, having instilled the fear in the parents, what happens as the fake medicine doesn’t really render the child non-autistic? Not only the autism remains, but the fear and despair.

And that’s classic for the Dr. Bob’s and the Dr. Jerry’s of the world–use despair and fear and then sell hope. False hope. Tell them all will be better with fake treatments like chelation. Years back, JB Handley, founder of Generation Rescue, told the world that if you chelate your autistic kid, you “get them back”.

Boyd Haley, long proponent of the autism as mercury poisoning idea tried to coin the phrase “mad child disease” (because autism is just like mad cow disease, right?) for autism. He went on to try to sell an untested industrial chemical, a chelation compound, as a “supplement”.

Then you have people like Andrew Wakefield. Mr. Wakefield has been at the forefront of the vaccines-cause-autism movement for about 20 years now. He introduced one of his first books with a glorification of a murder/suicide. He gives a fictionalized account of a real incident in which a mother jumped to her death, taking her autistic child with her. With no apparent sense of irony, he ends his intro with

She knew. She was ready. Falling ever faster, she pulled him to her, love and instinct keeping him safe.

Because pulling/pushing your child to his death is “love” and “keeping him safe”.

Andrew Wakefield also famously took on a family in a very desperate situation–the Spourdalakis family. Alex Spourdalakis was an autistic teen with very extraordinary needs. Mr. Wakefield was trying to launch a reality show where he would show that his “autism team” could swoop in and save people like Alex, blame vaccines and move on to the next family.

Only after collecting his tape, after taking him to his colleague for the diagnosis of the non-existent diagnosis of “autistic enterocolitis”, Alex’s mother brutally murdered him.

But don’t look to the people who spread the message of despair to take responsibility. No. They will tell you, as Dr. Bob does, that they are giving “encouraging messages”.

In the days when Yahoo Groups were flourishing and many were focused on giving autism parents a venue to discuss autism as vaccine injury and ways to “heal” that supposed injury, one could often read parents write, “what have I got to lose”. Because the lives of their autistic children where already so devalued by the process of selling fake cures that parents actually came to believe, “what have I got to lose”.

Is this what drove Dustin Hick’s mother to the edge? We don’t know yet. Maybe in the past few years she came to separate herself from the ideas of autism as vaccine injury and autistics as being less and “devastating” to the family and all that goes with that message.

While writing this article, the Age of Autism blog came out with their own article on the murder/suicide. Kim Stagliano left this as the conclusion to her comment.

I do understand that some families will be so overwhelmed, so set adrift, so exhausted and facing such despair that murder and/or suicide seems the only solution. There but for the grace of God.

Kim

No, Kim, you don’t understand. You are and have been part of the problem. You are just using this tragedy to continue to spread your message of despair. You offer no help, instead you just throw an anchor to those who are already having trouble staying afloat.

Not “there for the grace of God”, Kim. How about, “if you get to that point, STOP. Find resources. If you have reached the end of your abilities, pass on the responsibility to someone else. Because even though it may seem the only solution, it isn’t.”

How about trying to stop this instead of claiming it’s some “new normal”. Not on my watch, Kim. Perhaps on yours, but not on mine.

I won’t close with that. Instead I’ll end as I started, with Shannon Rosa’s Parenting Kids With Disabilities: How to Get Through Tough Times.

To Dustin’s father, I can only imagine what you are going through.

Dustin, you should be alive today.

—
By Matt Carey

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