Since these stories have attracted many people from outside the autism community, let me start with a few things I’d like you to know. I am not a science blogger. I am the parent of an autistic child. One with multiple disabilities, including intellectual disability. While I try to stay as objective as possible in my discussions, these topics are personal to me. Frequent readers here will know that the inequities in identification and services in autism, especially between racial and ethnic groups, is something that concerns me and is something I have long advocated to correct. And this has nothing to do with the fact that my kid is mixed race (not mixed African American, but mixed race nonetheless). I don’t think about that. My kid is just my kid. And that luxury comes because there are people who changed America and made it this way. Still, equity means a lot to me; inequity bothers me a great deal. I have upmost respect for those who have pioneered the civil rights we now enjoy and I abhor those who use race in order to sensationalize their message.
All this said, let me get this out of the way clearly right now: the CDC did not find that the MMR causes autism in African American boys. The CDC has not been running some sort of experiment and allowing kids to be vaccine injured.
Many people have taken on the science–or better stated lack thereof–of Mr. Hooker’s paper. And if Mr. Hooker’s paper has taught me anything, it’s that epidemiology isn’t something for amateurs, even ones with Ph.D.’s like Mr. Hooker and myself. Sure, one can do some simple first passes, but there’s a reason why people get their Ph.D.’s in epidemiology. Rather than have me go into the science and get diverted from what I really want to talk about, here are discussions by an Surgeon/scientist, scientist/writer specializing in healthcare an epidemiology grad student. When grad students are pointing out your very basic mistakes, this isn’t a close call. Mr. Hooker’s paper is flawed. If you are so inclined, please go and read these.
Instead of summarizing the analyses of this re-analysis paper, let’s go to Brian Hooker, who wrote the re-analysis study, and William Thompson, who was an author on the original study and see what they have to say.
What did Mr. Hooker write in his paper? The final sentence, the conclusion was “Additional research is required to better understand the relationship between MMR exposure and autism in African American males.” Not, “we’ve shown that MMR causes autism” but “additional research is required”. Of course he has since made much more sweeping statements. But he wrote in the paper what he knew he could defend. No one was going to read his paper and approve it for publication if he said “MMR causes autism”. Not because of some political reason. He just didn’t have the data to make that claim.
And here is a good time to point out: the CDC team did do additional research. Both within the paper–the analysis adjusted for possible other factors, and other papers.
Now let’s look to Mr. Thompson. It’s difficult here to discuss what he has to say. Not because his statement isn’t clear, it is. But because people tried hard to speak through him. And by that I mean that Andrew Wakefield and Brian Hooker basically said, “We spoke to a whistleblower. Here are some statements out of context. And here’s our point of view, please believe that the whistleblower shares our view.” As we have seen from Mr. Thompson’s own words, he was unaware that Mr. Hooker and Mr. Wakefield were going to release his identity or use his voice. So he clearly didn’t see, much less approve, of the video that was produced to promote the movie. So, what has Mr. Thompson had to say? We have his statement here, with no analysis, no editorializing. I’d encourage readers to go through that statement for themselves.
Everyone will pull one or more sentences out of his statement for further analysis, but given the discussion here I want to pull out the one where he expresses his concern: “My concern has been the decision to omit relevant findings in a particular study for a particular sub group for a particular vaccine.”
That’s his concern. Not “tens of thousands of African American boys were allowed to become autistic because we didn’t act.” Not “there was massive fraud and a coverup at the CDC”. No, this result should have been openly discussed.
As a researcher with 30 years experience (yes, I started as an undergraduate student) I could go into a long discussion of both sides of this scientific debate and tell you about how I side with Mr. Thompson’s co-authors that this is not a strong result and there are very reasonable arguments for why social factors resulted in the higher calculated risk, and so it was appropriate to leave this out of the paper (it also would have been appropriate to leave in with a discussion in ). Let’s instead focus on the two simple words I just wrote: scientific debate. Mr. Thompson appears to feel that this debate should have been opened up to the community, the broader scientific community, and I suspect and hope the autism community and the general population. As a parent, an advocate and a citizen, I have to say I hold that sentiment. That’s easy to say now. Now that we’ve seen how cynically this result was used. It’s easy to say we should have had this discussion 10 years ago and have this resolved and avoid this current PR campaign by Mr. Wakefield.
Can a researcher really be that troubled by the scientific debate behind a paper? I can certainly see it. I have over 100 publications to my name. Some have been very highly cited. Some I am quite proud of. And out of all of those, the one that sticks out in my mind is one I never wanted to write. There’s nothing wrong in it, but we held on to the results for years and instead of publishing them when they would have shown how far in front we were, they made it look like we were behind. If it had been left up to me, we would never have published that. That’s industrial research. So, yeah, I can understand on one level what Mr. Thompson seems to be saying. Of course my experience is on a whole different level than that of a public servant doing research. I didn’t have the responsibility Mr. Thompson has had and still has. I can absolutely see someone feeling strong regret over holding back on a result, even one that his coauthors and he agreed to hold back.
I don’t see Mr. Thompson’s regret indicating, as some have suggested, that he feels that the MMR vaccine has allowed a huge number of African American boys to become autistic. What do I base this upon? Mr. Thompson’s statement:
I regret that my coauthors and I omitted statistically significant information in our 2004 article published in the journal Pediatrics. The omitted data suggested that African American males who received the MMR vaccine before age 36 months were at increased risk for autism. Decisions were made regarding which findings to report after the data were collected, and I believe that the final study protocol was not followed.
He’s talking about the decision making process. He specifically states that the data “suggested” an increased risk in African American boys. He doesn’t say proved. Not demonstrated. Certainly he does not say anything that can be extrapolated to say that the MMR vaccine is linked to autism in all groups, and while we are at it, all vaccines cause autism, as some advocates have portrayed this statement online. And let’s take a look at another statement:
I want to be absolutely clear that I believe vaccines have saved and continue to save countless lives. I would never suggest that any parent avoid vaccinating children of any race. Vaccines prevent serious diseases, and the risks associated with their administration are vastly outweighed by their individual and societal benefits.
I wouldn’t make that statement if I felt that this statistically significant result meant definitively that autism could be prevented in African American boys.
You know what I also don’t see in this statement? Lie, fraud, cover-up, many of the terms that have been attributed to the Mr. Thompson when he was just being referred to as an anonymous whistleblower. Now that he’s known, and has been apparently granted federal whistleblower protection, we aren’t hearing these terms. We are hearing about a serious and important scientific debate.
People have tried to frame this, “since he feels so much remorse, since he’s stepping forward and risking his job” followed by one of myriad things this is supposed to tell us. Let’s remind ourselves of one point: it appears Mr. Thompson didn’t think he was stepping forward: he wasn’t planning on the fact that he was involved becoming public. Based on this, it doesn’t appear that his intent was to become a whistleblower. I’m not trying to take away from his actions, just to point out that his focus seems to have been trying to get this result out. He seems to have been guiding Mr. Hooker into doing the analysis so this result would be in the public domain and could be discussed.
Given all that, ask yourself this simple question: if this is the sort of thing that really bothers a CDC scientist, if this is the sort of thing a CDC scientist would risk his job over, how could anyone expect that CDC would ever be able to keep a lid on the supposed conspiracy/cover-up that some people claim is happening in the CDC autism research program?
Think about that. A single result, one which many people agreed didn’t need to be discussed, was held back and this CDC researcher struggled with that decision for a decade. But he and his colleagues are just going along with what is supposedly the biggest cover-up in history?
I would then ask you to consider this: if Mr. Hooker and Mr. Wakefield really felt they had their “smoking gun” with this result, why did they resort to their race-baiting video? Data and facts would have spoken much louder. And that video attack was obviously going to cost them in credibility. Then we could ask, why did Mr. Wakefield and Mr. Hooker betray the trust of Mr. Thompson? I’m pretty sure I have the answer to that: the image of a “whistleblower” was far more persuasive than the data Mr. Hooker was presenting. And combining the “whistleblower” who wasn’t with playing the race card gave them an emotional hook that was much more powerful than their data.
Having brought up this ugly race-baiting video (I’d encourage you to watch it if you haven’t already even though it is ugly. It is truly a step into the gutter for Mr. Wakefield, Mr. Hooker and Mr. Lewis), let’s address the questions that video poses. Even though they are patently ridiculous.
Are the CDC engaging in a new “Tuskegee” experiment? No. Again, it’s sad to even grace this question with recognition.
But, then, why did Mr. Wakefield make this claim? Well, I will say Mr. Wakefield was very shrewd, at least in the short term, to tap into such strong emotions. The video was certain to enrage many people. And it got the re-analysis discussed. But while Mr. Wakefield was shrewd, even he must have seen that for many it would backfire immediately and in the long term this would eventually backfire for many more. Eventually people start asking questions.
It’s been long enough to start asking some of those questions. Like, really, a Tuskegee experiment? CDC are engaging in an experiment to allow African American boys to become autistic for some study? And that would be because there are so few autistics that they need more for some study? (clearly not) And, if there’s an experiment going on, why is it that one big issue right now is the lack of racial/ethnic minorities in autism research? So, the CDC are allowing many more African American boys to become autistic for an experiment that they aren’t doing?
Of course the most obvious reason this strategy was only a short-term one was that eventually Mr. Thompson would speak. And he has. And he hasn’t said one word about this supposed “Tuskegee” experiment.
Let’s ask a very simple question: are we really supposed to believe that a civil rights pioneer who has devoted her life to people with developmental disabilities is running a Tuskegee type experiment? It is embarrassing to give this accusation credence enough to even address it. At the time that Marshalyn Yeargan-Allsopp was breaking down barriers, becoming the first African American to attend Sweet Briar College, the Supreme Court had yet to decide whether some states could continue to hold that marriages like mine were illegal. I live a life where I don’t even think about my kid’s mixed heritage and blended culture. And I can do that because of people like Dr. Yeargan-Allsopp. You can (and I’d say should) read her story online. Being he first to attend and graduate Sweet Briar was tough. She’d done more than enough but she didn’t stop. She became the first African American woman to enroll in and graduate from Emory’s medical school. Dr. Yeargan-Allsopp, if you ever read this know that I mean every word. You are an example of what I see is best in America. As are your colleagues.
Dr. Yeargan-Allsopp is just the most obvious example of how this whole mythos of a great CDC coverup is just without any merit. And that Mr. Wakefield and Mr. Hooker are fabricating stories that are not just insulting to the CDC teams, they are insulting to us in the autism community.
The CDC are made up of dedicated researchers and staff. People who have devoted their lives to areas of public health, like developmental disabilities. People who apparently struggle for years over a scientific decision as to whether to include a result that is so far from a smoking gun that Mr. Wakefield had to embellish his presentation with race-baiting attacks and play on fear and emotion. CDC staff are people. People with families. Some with autistic kids. I suspect there are some who are autistic themselves, and more are broader autism phenotype.
And Andrew Wakefield, Brian Hooker and the rest of their group are trying very hard to make you believe otherwise. They are trying to dehumanize these people. If they had facts, they’d use them. They don’t. Plain and simple. If they felt that these facts spoke for themselves, they wouldn’t have burned their “informant”. They wouldn’t play to our emotions with this nasty, race-baiting attack. Believe me, I know how strong those emotions are and how effective this video can be. It is a very cynical approach they are taking. Mr. Wakefield’s team is trying to drag more parents into the world of hatred that he’s built. All so they can claim that their ideas are right. Ideas which even now, even with access to someone “on the inside” at CDC, have no merit.
By Matt Carey