When my kid was diagnosed autistic I started reading research papers (I am a Ph.D. researcher by profession) and the raw data. One thing that struck me immediately was the fact that minority children are much less likely to get a diagnosis than white kids. And minority kids are diagnosed later.
This inequity really bothers me. Accurately identifying the needs of a disabled child can focus the appropriate therapies and supports on that child. The need to rectify this inequity is 100% accepted within the autism advocacy and research communities.
This inequity poses a problem to people who claim that autism is an “epidemic”. If we are not identifying all the autistics in any given group (we aren’t), autism prevalence numbers are inaccurate. Being inaccurate, how does one compare, say, one CDC prevalence number with one 2 years later and claim a “real” increase?
One can’t. Plain and simple.
So, for years, groups like those promoting the idea that autism is caused by vaccines have not only ignored this inequity, they have actively denied it. They are stuck between accepting that the data can’t show an epidemic, or accepting that minorities have some sort of protection from this supposed “autism as vaccine injury”.
When was the last time you read something from, say, the Age of Autism blog or Andrew Wakefield calling for efforts to end this inequity? You haven’t. They don’t do it. When have you heard from someone like Brian Hooker that we should study minority populations to see what “protects” them from “vaccine injury”? You haven’t.
Who is Brian Hooker? Brian Hooker is a parent of an autistic child. Brian Hooker strongly believes that vaccines cause autism. He can back this up with his observations of his child’s development. Observations which are contradicted by his child’s medical records. I discussed this before as Double checking Brian Hooker’s story in VAXXED. A Special Master (a judge in the vaccine court) put it very strongly:
After studying the extensive evidence in this case, I am convinced that the opinions provided by Petitioners’ experts in this case, advising the Hooker family that there is a causal connection between SRH’s vaccinations and either the initial causation or aggravation of SRH’s ASD, were quite wrong.
In the original, the Special Master emphasized “quite wrong“.
So, we have someone who believes vaccines cause autism to the point of ignoring the facts in front of him.
Let me just focus on how Mr. Hooker, in my view cynically, abuses the African American community in order to attack vaccines. From the website of an organization Mr. Hooker belongs to (the ironically–to be polite–named “Children’s Health Defense”), we read this:
Main Points from Reanalysis:
The rate of autism diagnoses has increased alarmingly in the U.S., and is about 25 percent higher in black children. Boys are far more likely than girls to receive this diagnosis.
…
This is not only wrong, it’s wrong in a way that points to incredible dishonesty.
This first point is that autism is about 25% higher in black children. A “main point from the reanalysis”.
Tell me, when you read that did you think, “this study found that autism is more prevalent in African American children”? If so, you were misled. The 25% higher prevalence is from a different study than Hookers. And that other study says something completely different.
From the Hooker study:
However, one study showed that prevalence of autism in African-Americans was approximately 25% higher than that of whites when the data were adjusted for socioeconomic factors[7].
Also notable is that, although the overall ASD prevalence was higher among non-Hispanic White and Asian children than among non-Hispanic Black or African-America and Hispanic children, when the results were stratified by SES, we saw that the racial/ethnic differences in prevalence varied by SES (Table 3). The lower prevalence among non-Hispanic Black or African-American and Hispanic children was seen only in the low SES category, and the fact that more non-Hispanic Black or African-American and Hispanic children live in poverty contributed to the lower overall prevalence among these groups.
Emphasis mine. Overall ASD prevalence was lower for African American children. Not 25% higher. This lower prevalence was due to lower socioeconomic status. I.e. poverty.
Want to see this a different way? Here’s a figure from the paper (click to enlarge):
The overall prevalence in White non-Hispanic kids was 6.9/1000. For black non-Hispanic kids it was 5.7/1000. About 20% lower. Not 25% higher as Mr. Hooker claims.
Fewer African American kids are getting autism services. Not because they aren’t autistic, but because their poverty keeps them from getting a diagnosis.
This is something we should be working towards fixing. No question. But don’t look to the anti-vaccine community to care or act. It’s an inconvenient fact for their epidemic story.
I guess he has such a low level of respect for the people in his own community (those who believe vaccines cause autism), that he thought no one would check this.
By the way, this paper isn’t the only one that shows a lower autism prevalence among African Americans. You know those CDC autism prevalence reports that come out every two years? Every single one has reported a lower prevalence among African Americans. Every one.
Previous reports from the ADDM Network estimated ASD prevalence among white children to exceed that among black children by approximately 30% in 2002, 2006, and 2010, and by approximately 20% in 2008 and 2012.
When I saw the claim on Hooker’s organization’s website I figured he must have cherry picked a study that shows what he needed to make his story work. It’s just such common knowledge in the autism community that African Americans get diagnosed less frequently. It’s in every CDC report. I didn’t know he wasn’t cherry picking, he was just misrepresenting the study entirely.
I discuss this as a scientist. He “misrepresented the study”. My father had a word for that sort of behavior: lying.
OK, Brian. You’ve read the studies and decided to do nothing about the fact that many autistic African American kids aren’t getting identified and getting appropriate services. I get that, you have your own cause. But, really, is that community so much of a nothing to you that you can just use them like this? I ask rhetorically. You and your community have always acted with callous disregard.
I once had hope that as it because completely obvious that you and your community were wrong (and that was many years ago), you’d join the actual autism community and put your advocacy to use. I now know that will never happen. And, frankly, we don’t need dishonest people.
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:
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?
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.
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.
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:
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.
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:
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 ( and ) 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.
Andrew Wakefield has a new video with stunning new revelations of malfeasance by the CDC. Well, that’s what he wants you to think. Let’s take a look and see how well his story stands up to scrutiny, shall we? To do this I’ll highlight two of the problems with the video. The first I’ve already discussed some: Mr. Wakefield claims the CDC hid a result but the CDC actually published it. For the second problem, let’s follow Mr. Wakefield as he creates a timeline showing us how the CDC’s research plan was supposedly revised in response to some analysis results. Then let’s piece together the real timeline.
We will start with problem one. The basic idea of Mr. Wakefields argument in his new video is that the CDC hid an association in a group of kids allegedly susceptible to becoming autistic due to the MMR. This group are those with “isolated autism”: autism without intellectual disability, birth defects or other possible cause.
There’s a lot of smoke and mirrors in the video, but here’s the main result. An increased odd ratio for “isolated autism” for kids vaccinated before 36 months. Calculated odds ratio is 2.48. With a confidence interval that doesn’t span 1 (1.16 to 5.31).
There’s much drama in the video about this. For example, here’s what Brian Hooker had to say (about 3:25 into the video).
What CDC employees do, when they see an effect, then they will get in a room together and they will work until that association goes away
Followed by Mr Wakefield:
But that didn’t seem to happen. They deviated further from the analysis plan by limiting the isolated group to only those with no mental retardation. Even changing the age categories and composition of the isolated subgroup may not have achieved the desired effect. Since, in the end, the simply omitted the relevant findings from the paper altogether.
That’s an amazing claim, isn’t it? The CDC allegedly just buried the result. “Omitted the findings altogether.”
Except that the CDC didn’t hide the result. They reported on autism without MR. Here’s table 4 from the paper in Pediatrics.
If you want to say, “well autism without MR isn’t the same thing as ‘isolated autism’, consider this: the answer is basically unchanged from what Mr. Wakefield claims was “omitted”. Take a look at the table: in the total sample, the group without MR has basically the same result as was supposedly hidden. Odds ratio 2.45 (compared to 2.48), with confidence interval from 1.20 to 5.00 (compared to 1.16 to 5.31). Which is to say: the CDC published the result that Mr. Wakefield claims was hidden.
Smoke. Mirrors. Wakefield. Hooker.
This result is 10 years old. And no one, not Wakefield, Not Hooker, not anyone in the real advocacy community has made a big deal out of it until now. I do not profess to understand how Mr. Wakefield nor Mr. Hooker think, but here’s one reason why most people haven’t considered this “autism without MR” result a big deal: this is a raw data result. A result unadjusted for any possible confounders. The adjusted result, also highlighted in the figure above, shows a confidence interval that spans 1. In other words, there’s no suggestion of a real effect when one does a full analysis.
Which of course shows us why people do full analyses. Sometimes associations change when one controls for other factors. Sometimes associations get stronger. Sometimes they go away. Sometimes things that appear to not be associations are shown to be associations.
Now that we’ve seen that the conclusion from Mr. Wakefield’s video is wrong, let’s consider a second problem with this new video: the way in which Mr. Wakefield manipulates his audience. He creates a timeline for the CDC’s actions that allows Mr. Wakefield to use his new favorite “f” word. Fraud. Let’s go through the timeline.
At about 2:20 in the video, Mr. Wakefield shows us a fraction of a page of the analysis plan. The protocol. Dated September 5, 2001.
We then get this ominous voiceover. Complete with the analysis plan page going up in flames. Very dramatic:
“Over the ensuing months, after the data after the data had been collected and analyzed, and strictly forbidden in the proper conduct of science, the group abandoned the approved analysis plan, introducing a revised analysis plan to help them deal with their problem.”
And to “prove” that months later the CDC introduced a new analysis plan we are shown notes supposedly documenting that the CDC team were creating that revised plan:
You are supposed to say, “they revised the analysis plan! That’s bad!” But do you see what I see? That these are notes from September 6, 2001 2011? Not after the “ensuing months” but one day later after the plan was finalized. I guess we weren’t supposed to look at the date, just the scary words “revised analysis plan”.
From these notes it appears to say that there will be a records review on September 12th and that in advance of that, whoever wrote these notes needs to get the revised analysis plan. Not, “hey, let’s fabricate a new analysis plan” but, “Hey, the plan was revised yesterday and I should get a copy”. Or, to put it another way: how sinister does the note read sound when the plan was just finalized the day before?
So, when did the CDC do the analysis that Mr. Wakefield shows in his video? You know, the analysis that the “revised” plan was supposed to avoid? November, 2001. Two months later after the plan was finalized and, importantly, two months after those notes were taken. Here’s a screenshot from a talk Mr. Hooker recently gave about his work and the DeStefano paper. He showed one of the same tables that Mr. Wakefield uses in his video (29:11 into the video). Notice the date? November 7. In the audio he says “they did see a statistically significant result as early as November 7th, 2001”. Mr. Wakefield’s first video (the ugly, race-baiting one) also references the November 7th meeting. So it looks like this is the earliest evidence Mr. Wakefield and Mr. Hooker have of the CDC obtaining results for this study.
Now, let’s compare how Mr. Wakefield presented a chain of events and what actually happened.
The impression Mr. Wakefield gives in his video is that:
(a) first the plan for the research was finalized by the CDC team,
(b) then they found data which showed an effect they didn’t like and
(c) after “ensuing months” the CDC team then held a meeting in which notes were taken that they had to revise the plan.
Here’s what the actual events appear to be
(a) the research plan was finalized on Sept. 5,
(b) on Sept. 6, someone (likely Mr. Thompson) took notes that he had to get the revised plan and
(c) on November 7, what appears to be the first pass at data analysis were presented presented in an internal CDC meeting.
No evidence of revising the plan after the analysis. The image of the meeting notes are being used as props to craft a story. Andrew Wakefield apparently doesn’t understand the first rule of documentaries. And apparently whatever ability he had for reporting factually has long since faded since he left grad school.
And, Brian Hooker? He’s not just a prop in these videos. He’s an active participant. His organization has paid Mr. Wakefield for at least the first video. The race-baiting video.
The autism communities deserve better. Better than Andrew Wakefield. Better than Brian Hooker.
Andrew Wakefield and Brian Hooker have been making claims that the CDC are involved in misconduct in autism research. In case you haven’t followed the story, it basically goes like this:
1) the CDC planned on a study of MMR and autism using the MADDSP data.
2) That the CDC created a research plan.
3) That the CDC found results they didn’t want to report: an calculated odds ratio for African American boys. So the CDC team allegedly deviated from that plan and didn’t report that result.
4) That the CDC introduced a new analysis after the plan: that they would include birth certificate data. While the CDC rationale for this new analysis was to provide more data (confounding variables) for the analysis, the allegedly real reason was to dilute the sample set and make statistically significant results disappear.
Here’s a paragraph from one of the press releases about the Hooker study:
According to Dr. Thompson’s statement, “Decisions were made regarding which findings to report after the data was collected.” Thompson’s conversations with Hooker confirmed that it was only after the CDC study coauthors observed results indicating a statistical association between MMR timing and autism among African-Americans boys, that they introduced the Georgia birth certificate criterion as a requirement for participation in the study. This had the effect of reducing the sample size by 41% and eliminating the statistical significance of the finding, which Hooker calls “a direct deviation from the agreed upon final study protocol – a serious violation.”
Or so goes the story. But as is often the case with Andrew Wakefield and Brian Hooker, the facts don’t match the claims.
In a recent video, Mr. Wakefield shows us the research plan the CDC had drafted. One red flag with Mr. Wakefield’s approach so far has been how he tries to tightly manage the flow of information. He has not shared the analysis plan in total and only now has he provided us with a couple screenshots. Begs the question: what are they hiding?
Here’s one screenshot from that video. This one is where he gets the idea that the plan was to report race for the entire sample.
Here’s the full text, in case that’s difficult to read:
Statistical Analysis
We will use conditional logistic regression stratified by matched sets to estimate the odds ratios for association between age at MMR vaccination and autism. In the main analyses, we will include all autism cases.
Potential confounding variables will be evaluated individually for their association with the autism case definition. Those with an odds ratio p-value < 0.20 will be included as covariates in a conditional logistic regression model to estimate adjusted odds ratios for the association between age at vaccination and autism. The only variable available to be assessed as a potential confounder using the entire sample is child’s race. For the children born in Georgia for whom we have birth certificate data, several sub-analyses will be carried out similar to the main analyses to assess the effect of several other potential confounding variables. A recent case control study (CDC, 2001) carried out with a subset of the autism cases from this study found that age matched cases and controls differed on several important background factors including maternal age, maternal education, birth type, and parity. The variables that will be assessed as potential confounders in this study will be birth weight, APGAR scores, gestational age, birth type, parity, maternal age, maternal race/ethnicity, and maternal education. (See Table 2 for how variables will be categorized.)
There are two interesting points in the above. First, the sentence Mr. Wakefield highlights doesn’t say what he claims. The only variable available to be assessed as a potential confounder using the entire sample is child’s race. The plan doesn’t say that they will test and report race. Consider the context: this is a section of the plan called “statistical analysis”. Put in context with the entire paragraph, this sentence is clear: the full dataset is limited because it only has one variable available.
The CDC didn’t deviate from the plan when they didn’t report on race for the total sample because that was never in the plan. If you want more evidence of this, the end of the paragraph says “See Table 2 for how variables will be categorized”. Table 2 is titled “Descriptive Statistics for Children Born in Georgia with Birth Certificate Records”. The variables will be categorized in the birth certificate sample.
The second interesting point from the paragraph Mr. Wakefield has shown us is this: the CDC plan included a birth certificate sample.
Here’s a screenshot of the analysis plan from that new video, showing the front page of the analysis plan:
Shown with this voice over by Mr. Wakefield (while the screenshot above is shown going up in flames…very dramatic)
“Over the ensuing months, after the data after the data had been collected and analyzed, and strictly forbidden in the proper conduct of science, the group abandoned the approved analysis plan, introducing a revised analysis plan to help them deal with their problem.”
So, in case you were thinking, “that’s an analysis plan, how do we know it’s the analysis plan”, well, you have Mr. Wakefield’s word on it. This is the “approved analysis plan” that the CDC allegedly had to revise.
What interests me about this as that’s the same plan that I have and was preparing to write about. It’s nice now to be able to be able to say that this is, indeed, the same document that Mr. Wakefield and Mr. Hooker are working with.
We’ve already seen two big mistakes by the Wakefield/Hooker team: first that the analysis plan doesn’t include a call to report on race separately in the total sample (the group without the birth certificates), second that the CDC “approved analysis plan” included analysis of a subset with birth certificate data.
So, what were the objectives of the study as in the plan?
Objectives:
We did not have information regarding onset of symptoms for most cases in this study and this limited our ability to do certain types of analyses such as case series analyses. In addition, a totally unexposed group (i.e., never received the MMR vaccine or other measles containing vaccine) was not available since measles, mumps, and rubella vaccination are required for school attendance in Georgia. The following objectives are considered the primary objectives for this study.
1) To determine if case children were more likely than their matched controls to have been vaccinated with MMR before 36 months of age. DSM-IV criteria for autism require that onset of symptoms occur before 36 months of age. Therefore, the 36-month cut-off is one that by definition can be used to classify a definitely “unexposed” group.
2) To determine whether there was a difference between cases and controls in the proportion of children exposed to their first dose of MMR vaccine before 18 months of age. This objective is based on the research that suggests the timing of first parental concern for the development of autism appears around 18 months of age (Taylor et al, 1999). In addition, Cathy Lord has reported that the range of first parental concern for regression was between 12 and 23 months of age with a mode of 19-21 months.
3) To determine whether the age distribution for receipt of the MMR vaccine differs between cases and controls.
The IOM (2001) specifically recommended additional research regarding autism subgroups and MMR. We will examine several subtypes of autism in this study. Data from the Metropolitan Atlanta Congenital Defects Program will be included in the sub-analyses to identify particular sub-groups. The following sub-group analyses will be conducted:
1) Analyses excluding cases with an established cause for autism or a co-occurring condition suggesting an early prenatal etiology (e.g., tuberous sclerosis, fragile X, or other congenital/chromosomal anomalies.)
We propose to conduct a case-control sub-analysis looking at cases without an established or presumptive cause for autism, such as tuberous sclerosis, fragile X, and other congenital/chromosomal anomalies. The purpose of doing this analysis is to create a more homogeneous case group that may be more likely to be impacted by the timing of the MMR vaccine. The objectives from the primary analyses will be replicated in this sub-analysis.
2) Analyses of Isolated versus Non-isolated Autism.
Isolated autism cases are cases with no other co-morbid developmental disability while non-isolated cases do have a co-morbid developmental disability. Previous research suggests that the majority of non-isolated cases have a co-existing developmental disability of mental retardation (CDC, 2001). Both isolated and non-isolated cases will be compared separately to controls. The objectives from the primary analyses will be replicated in this sub-analysis.
3) Analyses examining Gender Effects
Males are at substantially higher risk for autism and may be more vulnerable to the exposure associated with the MMR vaccine. We will analyze males and females separately and replicate the main objectives of the primary analyses as well as examine the potential confounders available from Georgia birth certificates.
4) Analyses excluding autism cases with known onset prior to 1 year of age.
For a subset of autism cases, we were able to identify the timing of parental concern. This sub-analysis will exclude all cases excluded with an established or presumptive cause for autism (e.g., tuberous sclerosis, fragile X, and other congenital/chromosomal anomalies.) and children for whom we have been able to identify first parental concern prior to 12 months of age.
Just in case anyone reading this is one of the few that has been following Mr. Wakefield’s video releases: in a new video Mr. Wakefield is trying to claim that the isolated autism subanalysis was not done. Except that it was. They made a minor change to autism without MR, which gave essentially the same result that Mr. Wakefield claims was hidden.
Autism without MR has an odds ratio of 2.45 with a 95% confidence interval of 1.20 to 5.00. I’ll write about this new video soon as there’s much sleight of hand going on, but Mr. Wakefield is claiming that a result of odd ratio = 2.48 with confidence interval of 1.16 to 5.31 was not reported. Besides ignoring the fact that the data were reported by the CDC, Mr. Wakefield ignores the fact that these are raw-data results. Total sample, unadjusted analysis. In the adjusted analysis the result does not suggest an association.
But, getting back to the main point: the claims of fraud are just not founded on fact. The two main claims of “fraud” are just wrong. The analysis plan did not state that they would do a subanalysis by race for the total sample. The addition of the birth certificate data is in the plan, not in some sort of revision. And Mr. Wakefield and Mr. Hooker knew this.
I am reminded of a quote from an ABC News article recently
“There are always going to be those people at the edges of science who want to shout because they don’t want to believe what the data are showing,” said Dr. Margaret Moon, a pediatrician and bioethicist at Johns Hopkins Berman Institute of Bioethics. She said she thought the study author “manipulated the data and manipulated the media in a very savvy and sophisticated way.”
“It’s not good. It’s not fair. It’s not honest. But it’s savvy,” Moon said.
An autism study that was slammed by experts and retracted this week by its publisher is still alive and well on the Internet, thanks to what critics are calling a perfect storm of lax publishing standards.
Experts say the lone study author played fast and loose with statistics to show a link between autism and the MMR vaccine for measles, mumps and rubella, some experts going as far as saying that the author deliberately did this, but the dubious results took off online anyway, quickly going viral.
“There are always going to be those people at the edges of science who want to shout because they don’t want to believe what the data are showing,” said Dr. Margaret Moon, a pediatrician and bioethicist at Johns Hopkins Berman Institute of Bioethics. She said she thought the study author “manipulated the data and manipulated the media in a very savvy and sophisticated way.”
“It’s not good. It’s not fair. It’s not honest. But it’s savvy,” Moon said.
Good to see this coming from outside the blogOsphere. Let’s pull one sentence out for emphasis, shall we?
She said she thought the study author “manipulated the data and manipulated the media in a very savvy and sophisticated way.”
When people ask about data manipulation and the MMR/Autism story, there it is.
There was no cover up. The study did not find any statistically significant associations between age at MMR vaccination and autism. In the CDC paper, similar proportions of case (children with autism) and control children (no autism) had been vaccinated before 18 months or before 24 months. While slightly more children with autism (93.4%) than children without autism (90.6%) were vaccinated between 24 and 36 months, this was most likely a result of immunization requirements for preschool special education program attendance in children with autism.
As this topic was so sensitive and complex, the CDC study published in Pediatrics in February 2004 underwent clearance at CDC, the usual process of internal review for scientific accuracy that all CDC papers undergo. In addition, before submission to the journal, the manuscript was reviewed by five experts outside of CDC and an independent CDC statistician (see acknowledgements section of the paper for specific names). Finally, all reputable journals undergo peer-review of all submitted papers before final publication.
The 2004 CDC study was designed as a case-control study. This means, children with autism (cases) were specifically identified, and children without autism (controls) were identified to be similar to the children with autism in other respects. When data are collected in a specific way for a specific type of statistical analysis (a case-control study in this instance), using those data in a different type of analysis can produce confusing results. Because the methods in Dr. Hooker’s reanalysis were not described in detail, it is hard to speculate why his results differed from CDC’s.
Since the 2004 Pediatrics paper, CDC has conducted additional studies of vaccines and autism. In 2004 the Institute of Medicine reviewed published and unpublished findings from the US and other countries and concluded that there was no association between MMR vaccination and autism. In 2011, another IOM committee reviewed additional research, and once again found that evidence favored rejection of this association.
I appreciate the work you do but I would like some clarification on recent events.
A gentleman came forward from the CDC to provide information about what he felt were inappropriately withheld results on an old autism study. This gentleman guided someone outside the CDC to reproduce the result. These results were published and with that publication a public relations campaign was started. This is where your board member, David Lewis, comes into the story. Mr. Lewis can be seen in the video produced. That video can be found here: https://www.youtube.com/watch?v=sGOtDVilkUc
The original video was produced with the whistleblower’s name censored and his voice modified. However, his gender was given, making it rather simple work for the CDC and everyone else to work out who this was (only one male was an author on the paper in question). Within 3 days of the release of the video, the online version was replaced with the uncensored version you see now–the version with “whistleblower revealed” as a title.
Since that time the whistleblower has released a statement including noting
1) he never consented to having his phone calls taped
2) he never consented to having his identity released
3) it appears, thus, that the video was not shown to the whistleblower, so he could not have approved of the rather ugly race-baiting angle it took.
Here are some other problematic details in these events.
1) Mr. Lewis is in the employ of the organization which did this study, Focus Autism. Both Mr. Lewis himself and his charity/church have been paid according to public tax forms from Focus Autism.
2) Mr. Lewis does not make this conflict of interest known in the video.
3) Mr. Lewis has a history of working with the director of the video, Andrew Wakefield. This includes soliciting donations through Mr. Lewis’ church with the purpose of using those funds to support Mr. Wakefield.
4) Mr. Wakefield has major conflicts of interest in this video as he is trying to rebuild the reputation he damaged with his unethical actions (as deemed by the U.K.’s General Medical Council).
5) These COI’s are not disclosed in the video, although most in the autism community are well aware of Mr. Wakefield’s.
6) The video takes a very ugly race-baiting approach. It takes what the whistleblower suggests is a scientific dispute and frames it as CDC officials partaking in a new “Tuskegee” experiment an compares the CDC officials unfavorably to Hitler, Stalin and Pol Pot. This includes civil rights pioneer Marshalyn Yeagan-Allsopp.
Mr. Lewis has not issued a statement that I can find distancing himself from the actions of his team: the breach of confidentiality of the whistleblower nor the cynical use of the whistleblower for political and public relations gain by Mr. Wakefield. I can not see how the treatment of this whistleblower by Mr. Lewis’ team can be construed as appropriate. In the video we can see Mr. Lewis making use of the opportunity for product placement of his book, “Science for Sale”. Given Mr. Lewis’ tacit approval of this video, again one put together for his own benefactor Focus Autism, I see his actions as “opinion for sale”.
I write for a website called LeftBrainRightBrain.co.uk. You will see I have been highly critical of the actions of the team that outed this whistleblower.
Could I ask for a statement from your organization? Do you believe these actions to be within the bounds of appropriate behavior for one working with a whistleblower? If so, could you elaborate, because recording a whistleblower without his permission, outing a whistleblower, and using the whistleblower for such an ugly public relations campaign without his approval seem far outside the bounds to me.
Educator/writer Liz Ditz often keeps a running summary of online discussions of trending topics. Below are some of her links. They are a few days old, but this gives you a starting place in case you wish to read multiple sources.
Of course, the key finding in Brian Hooker’s paper is that Wakefield was wrong. Indeed, in this video, Wakefield even admits that he was mostly wrong about MMR and autism. Let that sink in again. He admits that he was mostly wrong about MMR and autism. OK, he says we were “partially right,” but the flip side of that is that he must have been mostly wrong.
Hooker is wrong in his assertions because the DeStefano paper did not leave out African-American children on purpose. Children were excluded from the analysis because of very legitimate and scientific reasons. They either were not the right age, did not have autism but some other neurodevelopment disorder, or were born outside of Georgia. Even if they were tossed into the analysis, DeStefano et al used a statistical analysis that took into account things like birth weight and mother’s age when analysing the data. They wanted to make sure that what they were seeing was most likely because of the MMR vaccine and not because of some other factor associated with autism.
I’m very skeptical that Dr. Hooker’s simplified statistical approach can be better than DeStefano et al’s approach of conditional logistic regression. Conditional logistic regression has the advantage of being able to control for a multitude of confounders and effect modifiers.
I can imagine three main possibilities for what happened. The first possibility from what I know is that Thompson had some sort of disagreement with his co-investigators, made the incredibly stupid—yes, stupid—decision to unburden himself to Brian Hooker, who, he must have known or should have known, is an antivaccine crank associated with Andrew Wakefield, and is now paying the price for that decision… The second possibility is that Thompson wanted to correct something Hooker was doing with the data and somehow let himself be drawn into saying things that could easily be taken out of context. The third, and (I hope) much less likely, possibility is that Thompson’s gone off the deep end and gone antivaccine.
“What [Hooker] has done, apparently, is found grist for a perfect conspiracy theory to demonize the CDC, play the race card in a truly despicable fashion, and cast fear, uncertainty, and doubt about the CDC vaccination program, knowing that most of the white antivaccine activists who support hate the CDC so much that they won’t notice that even Hooker’s reanalysis doesn’t support their belief that vaccines caused the autism in their children. Meanwhile, there is no evidence, at least none, submitted by the antivaccine propagandists flogging this conspiracy theory, that there really was a CDC conspiracy to hide anything.
I want to focus on some statements made by one Andrew Wakefield, the British doctor who committed scientific fraud, resulting in the full retraction of his 1998 case series study on MMR and the stripping of his medical license. Wakefield boldly added himself to the list of not only torturing science, but now adds to his accomplishments torturing history and ethics (granted, we already knew he was ethically challenged). You see, in his videos (here and here) about the alleged “whistleblower”, William Thompson,Wakefield compared the purported “cover-up” to the Tuskegee syphilis debacle. It’s a false comparison used simply to inflame people and claim the race card.
It’s clear what’s happening here. Thompson, through sheer ignorance or total incompetence may have had a conversation with Hooker. Given the fact that the antivaccination gang lacks any serious scientific evidence supporting their dogma that vaccines cause autism, they jump on anything, however tenuous, that makes it appear that all of the evidence that refutes their dogma should be thrown in the garbage.
Here it is, Tuesday already, and the antivaccine underground is still on full mental jacket alert over the biggest story the antivaccine movement has seen in a while. Fortunately, it’s a story that’s been largely ignored by the mainstream media, which tells me that maybe, just maybe, the mainstream media has figured out that it shouldn’t give undue credence to cranks.
A study relying largely on a small group of subjects (about 20) with the conclusion that more work is needed. Sounds vaguely familiar. And, as we will see, Mr. Hooker has teamed up with Andrew Wakefield to put out a video where they jump past the whole this indicates more research is needed through this is absolute evidence of MMR causing autism directly to the CDC are engaging in a racist experiment sacrificing children to autism. It’s like the events around Mr. Wakefield’s 1997 Lancet paper cranked up to 11.
a friend, a friend that I consider to be intelligent and reasonable….first posted a link to a CNN article. Correction–it’s iCNN…which is VERY different. ANYONE can post ANYTHING there. You can, really. It’s a crowdsourcing platform. Shame on you CNN for whoring out your name for page views. Because this is what happens–people will post just about anything…..
I wish we knew the causes of autism, I really do. But vaccines ain’t it.
As much as the anti-vaccine activists have been demanding that Dr. Thompson come out into the open and make some sort of a statement, no one seems to demand that Andrew Jeremy Wakefield and his team publish the entire recorded conversation between Brian Hooker and Dr. Thompson. All we get are lies and innuendo. We have operatives like Ginger Taylor writing on Twitter that CDC deliberately didn’t look at birth certificates for African-American babies in the DeStefano study.
August 26, 2014: Anti-Vaccine Group The Thinking Mom’s Revolution Hosts a #CDCWhistleblower Twitter Party
There’s nothing like a good conspiracy theory to get the creative juices flowing. For actor Rob Schneider, that means getting your dander up over your incorrect belief that the CDC altered data to bury the “fact” that MMR causes autism.
Below are a selected list of discussions about Brian Hooker’s recent paper and the highly irresponsible way he and his team are promoting it. Let me know if you spot one I should add to the list.
… just how desperate the antivaccine movement is to have Brian Hooker’s incompetent “reanalysis” of a ten year old vaccine safety study and Andrew Wakefield’s despicable race-baiting video gain traction in the mainstream media. The failure of this conspiracy theory to do so is driving antivaccine activists into ever-greater fits of lunacy online.
There’s a conspiracy theory going around that the CDC covered up a link between autism and vaccines. From what I can tell, this conspiracy theory is on the same level as the one that NASA faked the Moon landings. And you know how I feel about that.
… the hashtag #CDCwhistleblower to do what really amounted to the social media equivalent of a temper tantrum, whining about how the mainstream media is not reporting on the study. It was really a sad display, as they simply all copied and pasted from the same list of talking points, not even adding their own interpretation.
August 27, 2014, in the morning: The Journal Translational Neurodegeneration removes Hooker’s paper from the public domain
An article purporting to find that black children are at substantially increased risk for autism after early exposure to the measles-mumps-rubella vaccine has been shelved, amid claims that a CDC whistleblower has accused health officials of suppressing information about the link.
August 27, 2014, Reuben Gaines at The Poxes Blog: Even the bottom-feeding journals seem to have some sense
’m still left wondering how this paper got through peer review, or who did the peer review. They seem to not have bothered with checking the biostatistics or with looking back at the DeStefano paper.
August 27, 2014, at approximately 2:30 pm, PDT, attorneys for William W. Thompson, the CDC employee, publish Thompson’s statement
My problem with Dr. Thompson’s statement is that the data were not omitted willy-nilly. There was a protocol that was established, and it excluded from the analysis children of different ethnicities, not just African Americans. In that exclusion, a vaccine-autism signal that was confounded by different factors was lost. It wasn’t lost out of bias but out of properly adjusting for different factors.
Apparently Mr. Hooker is unaware that the secrecy of confession is absolute. Priests, real ones, not self appointed ones like Mr. Hooker, have been known to go to jail rather than divulge what they’ve been told in confession. Real priests don’t record confessions so they can betray another.
Dr. Frank DeStefano, lead author of the 2004 study, said he and his colleagues stand by their findings. DeStefano said all the study authors, including Thompson, agreed on the analysis and interpretation before the study was submitted for publication 10 years ago. However, he said he plans to review his notes and will decide whether to run another analysis on the data.
While the black ribbon can mean different things to different people, it’s main use is for grieving or remembering the fallen, the dead. The way that these people have used it is to try to bring attention to their cause by equating autism with a death or a loss.
The groups promoting vaccines causing autism have been handed probably their biggest story in a decade. They are claiming, and it seams likely, that a senior CDC epidemiologist came to them with information that a statistically significant result of possible increased autism risk from the MMR in a specific subpopulation was not reported.
I’ll go into a lot of background below, but if you wish to read up about these events:
Here’s the press release for the recent reanalysis study
Even with multiple press releases and no doubt other efforts to gain media attention, this story has yet to break out into a mainstream news story. Some alternative news sources and many parent supporters of the vaccine/autism idea have discussed this lack of media attention. And there’s a YouTube video by Andrew Wakefield that I’ll embed below. That video deserves and probably will get it’s own article here on Left Brain/Right Brain. It is remarkably bad.
It has often been said that the parents promoting the idea that autism is a vaccine-induced epidemic are their own worst enemies. As the parent of a multiply disabled autistic child I can say without reservation that these groups are no friends to the majority of the autism parent community either. Nor are they friends to the real majority of our community: autistics. The vaccines-caused-an-autism-epidemic parents have refused to support any research which goes against their idea that autism is a vaccine-induced epidemic. They don’t support research into the prevalence of autism in adults. Likely because they worry that this will show that their epidemic idea is false. In the process we lose the chance to learn from the previous generations of autistics about what has worked and what has not. Information which is critical to this autism parent. These groups have failed to accept that the lower prevalence of identified autism in racial and ethnic minorities indicates that the prevalence numbers we so often hear are not the a true count of the fraction of our population that is autistic. Because to admit that is to admit that they are misusing the numbers they rely upon to claim an epidemic. Their lack of support has hindered attempts to improve identification and get appropriate services for autistics in racial and ethnic minorities. This is a point that is incredibly ironic given the way these groups are framing their recent news as you will see (or have seen if you read Ms. Ditz’ article linked above). On top of this they have produced a way over-the-top PR campaign about their news, demonstrating their deep hatred for the CDC. If I were to tell you that Andrew Wakefield is claiming that the CDC are worse than Adolf Hitler, Josef Stalin and Pol Pot (because, you see, in Mr. Wakefield’s eyes at least those dictators were sincere), would you believe me? Would you think I was making this up? If I said that Mr. Wakefield has played the race card in a disgusting way, claiming that the U.S. vaccine program is a new Tuskegee experiment, would you believe me? You can skip down to the bottom if you want to see that discussion and video. I’ll start with the science.
About 10 years ago a team from the CDC published a study: Age at First Measles-Mumps-Rubella Vaccination in Children With Autism and School-Matched Control Subjects: A Population-Based Study in Metropolitan Atlanta (full paper here). They took data from the CDC’s Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP). In order to control for potential confounding variables–like mother’s age, birth weight and more, the authors of the MMR follow-up study pulled birth certificate records. They only pulled them for kids born in Georgia. Could be there was a logistics issue (trying to track down records across the country) or if birth records were not consistent across the US. Also, they would have had to find control kids for those born outside Georgia, and that would have been a big logistics issue. In the end there were two analyses presented–one on the raw data with all the kids, and one with a more detailed analysis done with this smaller “birth certificate” cohort.
This is a good table to review this study. What did they find? The general result is that time of MMR vaccine receipt was similar between autistic kids and non autistic kids, but was statistically more common among autistic kids. In the table above we see that for the most part, the sub groups reported had generally no increased risk of autism with MMR. I.e. in most examples the 95% confidence intervals encompass 1. The unadjusted sample “all cases” and “boys” do not encompass 1. If those were all the data we had, we’d say “let’s look more closely at these”. We’d start with exactly what the authors do–check for confounding variables and see if the effect gets bigger or smaller. In the adjusted data, all the odds ratios encompass one. Some are high enough to warrant a closer look: kids aged 3-5 and boys. Combining these two I’d probably ask, “what about boys aged 3-5”, but the authors take on the age 3-5 question in general in the discussion citing that the 3-5 age group autistics were mostly in special ed preschool and were thus required to have MMR.
If you look at Table 5 (click to enlarge) you see an interesting and very strange trend. It was in the other data but it’s really clear here. The odds ratio is much larger for kids who got MMR before 36 months than for kids who got it before 24 months. The odds ratios still encompass 1, but there is something going on in the data for the kids who got vaccines between 24 and 36 months. And by “something going on” we always have to consider social factors. But take a look:
Take, for example, maternal education. Kids with mothers who had more than 15 years of education had an odds ratio of only 0.61 if their kids got the MMR before 24 months, but that odds ratio jumps up to 2.76 if their kids got the vaccine before 36 months. In both the confidence intervals encompass 1, so we can’t say “MMR before 24 months is protective but MMR before 36 months increases risk”. But that difference is striking. Even if these results were statistically significant, it doesn’t make sense to say, “the MMR vaccine causes autism in kids when it is given between 24 and 26 months if their mothers are well educated. And, by the way, it’s protective if given before 36 months.”
While not as striking, the differences between the unadjusted and adjusted analyses in table 3 are notable. Odds ratios change when you take into account other factors. I’m no epidemiologist, but if this isn’t covered in epidemiology 101 I’ll be stunned. In physics (the field of my Ph.D.) we talk about “hidden variables”. You see one thing correlated with another but in reality a third, “hidden”, variable is actually causing the association.
That said, the CDC MMR paper is not a study without limitations (no study is). One major limitation was the need discussed above–to argue why the 3-5 age group kids had a higher prevalence.
At this point researchers (both the study authors and those reading this paper) and advocates can take a number of approaches. Here are 4:
1) They can say, “yep, that’s plausible enough. We’ve worked this dataset enough. This tells us that MMR doesn’t cause autism. Let’s move on from MMR.”
That didn’t happen and rightfully so. This isn’t a particularly strong study. It’s not the final word and I don’t think it was intended to be. It was a relatively quick study using an existing population. In the end there were more studies on autism and MMR.
2) Advocates and researchers could take the approach: “There’s an association there, but these data are too limited to really answer the question of causation. Can we do a study to nail down if there’s something about those kids born in those specific years (the 3-5 year olds) who got the MMR between 24 and 36 months? Maybe look at further subsets?” And, while it’s easy to say with hindsight, this is the approach that should have been taken in my opinion. I am unaware of work by this team of researchers or external researchers which addressed this question. I am also unaware of calls by the autism community to do such a follow up, by the way.
3) Advocates and/or researchers could say, “I think we can tease more out of these data. Hey, CDC, can I have that dataset to review myself?” Because the CDC did make these data available for serious researchers to review. CDC researchers moved on to other topics in autism and vaccines, but other researchers or qualified advocates could have taken this up.
4) Advocates (not so much researchers I suspect) could say, “I don’t trust the CDC to add 1 and 1. Give me those data and I’ll do the analysis myself. Even those areas where you show a lack of association are probably wrong.” And, yes, there are advocates like that. Well, except that no one asked for the data back then. More recently, though someone did. Which leads us to:
An autism parent and strong proponent of the failed mercury hypothesis, Brian Hooker, recently published a study re-analyzing that old CDC dataset on MMR and autism. His financial backers put out a press release claiming that not only does this study show that vaccines cause autism in a specific subgroup, but that this study was prompted by a CDC “whistleblower”. I.e. someone who was inside CDC and knew about the details of the CDC study was in contact with Mr. Hooker.
That’s a pretty dramatic press release. Let’s take some time on it.
Focus Autism Releases Findings on 2003 CDC Autism Study – Higher Autism Rate Among African-American Boys Receiving MMR Shot Earlier than 36 Months
Focus Autism releases their findings of a possible reduction in the sample size of a major 2003 study conducted by the Centers for Disease Control and Prevention. This sample size reduction negates statistically significant findings from the study.
This title is why I jumped to the press release before talking about Mr. Hooker’s paper. With this title we know (a) that Mr. Hooker is claiming an association among a specific subgroup only (African American boys) and (b) he’s claiming that there was some sort of sleight of hand by the CDC where they reduced the sample size.
Well we already know from the CDC study that autism rates were higher in kids who got the MMR before 36 months. It’s right there in the conclusion statement of the abstract. But not so much before 24 months. And we know autism rates were higher in boys. We didn’t see the analysis narrowed down to African American boys.
The press release states:
“However, CDC researchers did not include any children that did not have a valid State of Georgia birth certificate – reducing the study’s sample size by 41% . Dr. Hooker explains that by introducing this discretionary criteria into the analysis, the cohort size was sharply reduced, eliminating what would have been a higher statistical finding. ”
This is a rather odd statement. And by odd, I mean so obviously false that I wonder why it was written. See for yourself above, the study includes *both* the group with the birth certificate data and the raw data. Mr. Hooker’s explanation is, well, lacking. Sure, it is “discretionary” to try to account for confounding variables. It’s the sort of discretion I expect from epidemiologists. It’s like saying, “the engineers designing the Tacoma Narrows bridge decided against including the discretionary criteria of wind”. Also, consider that a result can be both statistically significant and wrong as is often the case when one finds something “statistically significant” without looking for or correcting for hidden variables.
In another press release Mr. Hooker calls the birth certificate data “irrelevant and unnecessary”. Again, why put out statements that anyone familiar with epidemiology would know to be false?
Elsewhere Mr. Hooker has even challenged the fact that one can obtain the stated data from birth certificates. He is in effect stating that not only is there no point in controlling for such factors, but that the CDC just lied and didn’t even have those data from the birth certificates.
Despite your assertions and the assertions of Destefano, Birth Certificates do not contain the information on the covariates you cite: birth weight, maternal age, maternal education, parity, etc. If you had read my paper, you would see that I repeated the analyses of the CDC and obtained the same results that they obtained in both what was published originally and what was withheld. Also, the birth certificate restriction was NOT applied to other race categories outside of African Americans.
Readers interested in whether Mr. Hooker is correct can take a look at the U.S. Standard Certificate of Live Birth. While this is the revised version, states standardized on birth certificates back in the 1990’s.
Epidemiologists are aware that the piece of paper a parent takes home isn’t necessarily the same birth certificate data that is in the full record.
And “Also, the birth certificate restriction was NOT applied to other race categories outside of African Americans”. Here we see the race card being played. A card that we will soon see was played with a very heavy hand. But to address the assertion made by Mr. Hooker, I wonder how he explains that there are 333 white autistic kids in the “total sample” and 199 in the “birth certificate sample”. Which is to say, his statement is false.
In one of the press releases, Mr. Hooker states
When asked if there could be any scientific basis for excluding children born outside of Georgia, Hooker responded, “I know of none, and none has been provided by the authors of the DeStefano study.”
Again, children born outside of Georgia were not excluded as Mr. Hooker asserts. Analyses were presented on both those born within Georgia (including adjustments for vital statistics found on the birth certificates) and a total sample including those born outside Georgia (the unadjusted analysis). If Mr. Hooker is “unaware” why people would do such an elementary epimiological task as adjusting data with covariates, I suggest he was a poor choice to perform Focus Autism’s study. Another thought would be that Mr. Hooker could read his own paper where he states:
It should be noted that a recent publication has shown that the prevalence of autism in African Americans is nearly 25% higher than that of whites. This value was obtained when CDC data were appropriately analyzed based on socioeconomic status
Mr. Hooker notes that when one does an analysis “appropriately” one includes socioeconomic status (such as with data found in the full birth certificates).
If Mr. Hooker would like to ask why the CDC team didn’t look for birth certificate data on kids born outside of Georgia, that’s would be a better place to start. Then we can discuss whether the CDC would then need 3 controls for each non-Georgia born kid, controls from the same place of birth as the study team did with Georgia born kids. And we could discuss how difficult that would be. And whether that would introduce more problems than it might solve. That’s a reasonable discussion. Claiming there’s no reason to gather important data is not.
Enough of the inconsistencies in Mr. Hooker’s recent statements. What was Mr. Hooker’s method and what did Mr. Hooker find in his analysis? The Poxes Blog and epidemiologcal.net discuss this with more expertise than I can. Mr. Hooker does not recreate the CDC’s case-control study. That would require that match autistic kids and non autistic kids on the parameters he says aren’t available, and adjust for those same parameters. Instead he does a cohort study without adjustments. As discussed elsewhere, this is a much weaker approach. His main result is as the press release states “Higher Autism Rate Among African-American Boys Receiving MMR Shot Earlier than 36 Months”. He does not note in his press release “no risk for MMR and autism in everyone else”. Here is table 2 from his paper showing that.
He states a relative risk that is statistically significant for African American boys who get the vaccine before 24 months (RR=1.73) and before 36 months (RR=3.36). No increased risk for African American girls. And, as Table 3 shows, no increased risk for non African Americans.
Mr. Hooker says his results are statistically significant. Others have questioned whether his analysis is really appropriate to say this, but for now let’s just benchmark this by checking how large his sample group for that large relative risk is anyway. Just so we know. The high risk group are kids vaccinated before 36 months. Here’s a figure from Table 2 of DeStefano et al.:
There are 45 autistic kids vaccinated between 24 and 36 months. African Americans account for 40% of the total population, but let’s say about 1/2 of this 24-36 age group are African American. Or about 22 kids. 22 kids and Mr. Hooker is doing no adjustments for factors such as those found on birth certificates. The sort of socioeconomic parameters that he notes are important to get an accurate prevalence in the African American population.
Which is to say: this is not a strong finding by any stretch of the imagination.
Mr. Hooker took a subgroup–African American males–and found that there was in the unadjusted data a statistically significant relative risk. An increased relative risk is not the same thing as showing causation, especially when you are working with unadjusted data and many other limitations in this. This is enough to raise the question of whether we should do more studies to show if this increased risk holds up to further scrutiny. This is how Mr. Hooker concludes his paper:
Routine childhood vaccination is considered an important public health tool in reducing the morbidity and mortality associated with infectious diseases. However, consideration should be made in the current United States vaccination schedule for genetic subpopulations that may be associated with vaccine adverse events. Additional research is required to better understand the relationship between MMR exposure and autism in African American males.
A study relying largely on a small group of subjects (about 20) with the conclusion that more work is needed. Sounds vaguely familiar. And, as we will see, Mr. Hooker has teamed up with Andrew Wakefield to put out a video where they jump past the whole this indicates more research is needed through this is absolute evidence of MMR causing autism directly to the CDC are engaging in a racist experiment sacrificing children to autism. It’s like the events around Mr. Wakefield’s 1997 Lancet paper cranked up to 11.
Even though Mr. Hooker’s analysis is quite limited, as in it would be (and you will see is) incredibly irresponsible to jump from this to say “MMR Causes Autism in African American Males”, I’d like to see either more data or a good explanation why someone shouldn’t do it. If for nothing else, precisely to head off the sort of irresponsible and damaging PR campaign that Mr. Hooker and Mr. Wakefield have engaged in. There are a lot of data on MMR and autism since DeStefano first published (especially Hornig et al.) showing that MMR doesn’t increase autism risk. And Mr. Hooker himself has shown that autism risk is not raised in everyone other than African American boys. One can easily argue (and should) that the MMR/Autism/African American Boys result is spurious. But I’d like to see more evidence to support that. I don’t see evidence so far that this is fraud, but I don’t agree with the scientific decisions made.
All this said, can reasonable people really raise a concern about autism risk given how inflammatory that discussion can be? Yes. Here’s an example of how a study found a possible risk factor and follow up studies answered the question. The Price study was one of the largest studies on thimerosal exposure and autism risk. As part of that study they considered folic acid intake in mothers as one confounding variable for thimerosal exposure. They reported that there could be an increased autism risk from taking folic acid. The calculated risk for mothers who reported taking folic acid was about double that of those who didn’t. Keep in mind that folic acid supplementation for pregnant women is a major public health program as it reduces the risk of some developmental disabilities, so the possibility that it was increasing autism risk has major public health implications. This is a good parallel to the question of vaccines (public health program) and autism.
After the Price study, multiple studies were performed looking folic acid intake and autism risk (I can’t say that these were prompted by Price et al., but it seems reasonable to think they might):
How can we summarize the folic acid history? A possible risk factor was found. It wasn’t plausible since folic acid seems to be protective for birth defects. But people did a second check (and even a third) and found that not only is folic acid not a risk factor, it may even reduce autism risk. Which even though this is what people would have said was biologically the most probable outcome at the start, this was a needed exercise.
Can we draw a parallel? Well, DeStefano et al. and later Hooker found a possible risk for MMR and boys (with Hooker citing African American Boys) getting the MMR vaccine late but before 36 months. It doesn’t seem plausible or even self consistent with the other results of the study dataset as has already been discussed. Reasonable people could move forward on this and see if existing data could answer this or if a new study is warranted.
Reasonable people could. As I’ve alluded to, we aren’t really dealing with a “and reasonable people” scenario. And here’s where we get into the “these people are their own worst enemies” part of the discussion. We’ve already seen how Mr. Hooker has made incorrect statements about the birth certificates of the DeStefano study. Let’s look another of Mr. Hooker’s statements and ask, “is this the statement of a reasonable person”?
He added, “The exclusion is reminiscent of tactics historically used to deprive African-Americans of the vote by requiring valid birth certificates.”
And here we see Mr. Hooker and Focus Autism playing the race card for sensational effect. One can’t even say this is a stretch. It’s just ridiculous. There was no exclusion and certainly people didn’t say, “let’s exclude African Americans and deny them their rights.” Maybe some will say this still within the realm of what a reasonable person might say. I would then ask you to watch this video produced to promote this study and the events surrounding it. The really inflammatory statements are made by Andrew Wakefield, but this looks to be a joint effort between Mr. Wakefield and Mr. Hooker. If Mr. Hooker would like to explain that he disagrees with the approach Mr. Wakefield took, I’ll be quick to rewrite this. But for now, here’s what team Wakefield/Hooker has prepared for you:
As promised above here are Andrew Wakefield and Brian Hooker claiming that the CDC are running a Tuskegee like experiment, where in Mr. Wakefield’s view African American boys are allowed become autistic by MMR for some nefarious and unexplained reason (because there are so few autistics that we need to create some for study?). I suspect Mr. Hooker will take offense at me stating that he is claiming this as it’s Mr. Wakefield who says the words. OK. Go ahead and put out a statement distancing yourself from this irresponsible attack Mr. Hooker. And, yes, I wasn’t exaggerating when I said that Mr. Wakefield thinks that the CDC are even worse than Hitler, Stalin and Pol Pot. The dictators, you see, were sincere. (8:40 into the video).
No one has yet responded in the mainstream media to the press releases and the Hooker study. And many of Mr. Wakefield’s supporters online are noticing this and asking why. Here are some possibilities:
2) perhaps the most famous person in that bad science and unethical behavior is your spokesperson on this new media campaign: Andrew Wakefield.
3) members of the press are not generally attracted to stories where people who have devoted their lives to preventing infectious diseases and to understanding developmental disability are called worse than Hitler.
4) after years of a campaign to instill fear about vaccines, we are in the midst of outbreaks of multiple vaccine preventable diseases. The founder of the blog where Mr. Hooker chose to release and discuss his new results famously once bragged that his groups was going to bring the “U.S. vaccine program to its knees”
Mr. Wakefield and Mr. Hooker probably (and some of their followers certainly) have been wondering why their news of a CDC “informant” hasn’t garnered media attention. If you read the press releases and have followed the online discussions, you know that the idea for this reanalysis of the DeStefano data came from documents obtained by Congressman Issa and from phone conversations Mr. Hooker had with a CDC epidemiologist.
In their first press release, Mr. Hooker’s team noted that
According to Dr. Hooker, the CDC whistleblower informant — who wishes to remain anonymous — guided him to evidence that a statistically significant relationship between the age the MMR vaccine was first given and autism incidence in African-American boys was hidden by CDC researchers.
That was released on a Tuesday. The video came out the Monday previous, but was censored and the voice of the “informant” was obscured. On that same Monday, Mr. Wakefield noted on his Facebook page “He will be identified very soon” (referring to the “informant”). In other words, they had no intention of keeping this man’s identity secret. And a few days late, on Thursday night, the video was changed so that the censoring was gone and the voice was not obscured.
So, we have an informant who was obviously working with the Hooker/Wakefield team for months who wanted to remain anonymous. The Wakefield/Hooker team left clues about who this person was: they noted that he works for the CDC and has for some number of years and Mr. Hooker spoke of the informant as “him”. There are only two males who worked on that paper: W.W. Anderson Thompson (who has been named as the informant) and a statistician in the acknowledgments. Which of those two are on record within CDC as having voiced a strong opinion about the African American boy data? Heck, I nearly called Mr. Thompson myself to ask if he was working with Mr. Hooker. I wouldn’t be surprised if people at the CDC figured it out and that’s why his name was so quickly divulged by Mr. Wakefield. Why keep his name secret if you’ve already given out enough information to his superiors for them to break his cover?
And with that let’s get back to the “these guys are their own worst enemies” discussion. When you have someone you consider a whistleblower, it is your duty to protect that person. Not out him/her. Mr. Wakefield doesn’t seem to understand that. Years after having ignored the information given to him by a whistleblower in the UK, Mr. Wakefield not only outed that whistleblower, he first threatened the man with disclosure:
If Mr. Thompson intended to stay anonymous, and I have no reason to suspect otherwise, he chose poorly in his confidants.
Mr. Thompson had many options of to whom he could reveal his information. Many people would have taken him seriously and not taken the highly irresponsible approach that Brian Hooker has with the race-baiting video and more. I’ve read a number of people speculate that Mr. Thompson didn’t know what he was getting himself in to. If he really chose to work closely with Mr. Hooker, I can’t see how he didn’t see the extremes this information would be put to.
Mr. Hooker has had much communication with the CDC over the past decade and more. Here is some of that communication (about 3MB worth), selected by Mr. Hooker himself as an exhibit in his FOIA case with the CDC.
People at the CDC, likely Mr. Thompson included, would know of Mr. Hooker’s very strong opinions of them. A letter sent to then CDC Director Julie Gerberding is entitled “War Crimes in Your Fight Against Infectious Disease and recommends: “I would personally urge you to review the Book of Matthew 18:6 and consider your own responsibility to all children of the U.S. including my own son.” Italics in the original. Here is one version of Matthew 18:6:
But whoso shall offend one of these little ones which believe in me, it were better for him that a millstone were hanged about his neck, and that he were drowned in the depth of the sea.
Brian Hooker and Andrew Wakefield present at parent conventions such as AutismOne, where other presenters are selling their goods and services with faux autism treatments. Treatments such as bleach enemas and drinks (MMS), Lupron (a drug which shuts down sex hormone production. Essentially chemical castration), chelation, megadoses of “supplements” and more. They are sold largely on the promise of healing “vaccine injury”. By handing the Hooker/Wakefield team this PR win, Mr. Thompson will be feeding that industry.
This all said, we only have a few sentences on a video purporting to be Mr. Thompson. I have no reason yet to doubt that his his voice. I also don’t have the full conversations in context. Nor do I have evidence that Mr. Thompson agreed to be outed. Nor do I have evidence that Mr. Thompson agreed to have his phone conversations recorded. Nor do I have evidence that Mr. Thompson continues to communicate with Mr. Hooker. In fact he’s been silent since this story broke and no new quotes from him have been passed by Mr. Hooker or Mr. Wakefield.
What’s more, and rather odd, is that MMR is not really either Mr. Thompson nor Mr. Hooker’s primary interest. Mr. Thompson was author on a number of major thimerosal papers. First author on one. Mr. Hooker’s primary focus on the vaccine/autism discussion has been on thimerosal. I have been reading people online claiming that these events are what they’ve expected and hoped for: someone from CDC exposing that all the vaccine/autism work is fraudulent. But this isn’t the case at all. Nothing so far on thimerosal. One re-analysis of some MMR work that, while important to discuss, is not very strong at all. And while I have written what is possibly my longest article yet (out of something like 2000), there isn’t, as they say, much there there when it comes to anything substantial about vaccines and autism. What we do have is a public relations mess. A story that will be exploited by unethical people to frighten parents and try to revamp their own image and take some revenge.
More recently, at least one (non reliable) site is reporting that Mr. Thompson has spoken through his attorney. The message (and I paraphrase): in getting the preliminary result on African American boys out, he did what he set out to do.
In the end, it is once again public health and autism families that will pay the price. People will use this in their attempt to “bring the U.S. vaccine program to it’s knees”. More autism parents will be dragged into the self blame and guilt that comes with the vaccines-cause-autism beliefs. And disabled children will be subjected to abusive faux therapies in attempts to heal their “vaccine injury”.
I recently wrote about how Robert Kennedy Jr. is gutless (I’m an autism parent. No way I will vote for Robert Kennedy Jr.. He’s gutless). Over the past few decades, Mr. Kennedy has spoken at many events where fake, even abusive, therapies are promoted to autism parents for use on their disabled children. As a […]
It’s four years since Santa Clara County (SCC) ordered shelter-in-place to limit the spread of COVD-19. This was the first such order in the country when they did this on March 16, 2020. It is a decision which gets much criticism today from some quarters. Is that criticism deserved? Let’s start with a simple metric […]
As an example, I will discuss one particularly egregious “therapy” that was used on autistic children, the so-called “Lupron protocol”. Mr. Kennedy was in a perfect spot to stop or limit this therapy, but he never did. It would have taken courage, and, in my opinion, Mr. Kennedy is gutless. Robert Kennedy (RFK Jr.) is […]
There’s the ghost of a girl I’ll never beBefore I go, let go of the ghostJust let her disappearAnd then maybe you’ll see meWhile I’m still hereI’m still here The musical Kimberly Akimbo has been nominated for multiple Tony Awards. The show is about a 15 year old girl who has a rapid aging disease […]
I happened to run across this study from last year: Maternal Influenza A(H1N1) Immunization During Pregnancy and Risk for Autism Spectrum Disorder in Offspring : A Cohort Study and thought it worth highlighting. The anti-vaccine movement has been good at moving goalposts and one of their lines in recent years has been that vaccines are […]
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