If you blinked, you might have missed this week’s announcement that the autism rate has remained at 1 in 68. That’s 1.5 percent of eight year olds born in 2004 and surveyed in 2012 (what’s the hurry, right?). Perhaps because the number hasn’t changed since the last report two years ago, the news didn’t make the splash it sometimes does. Yet it’s just as shocking, not least because it highlights the way the Centers for Disease Control and Prevention “manages” the autism epidemic.
Mark Blaxill, my co-author and colleague at AOA and HealthChoice, wrote about this powerfully earlier this week contrasting the CDC report with evidence he obtained from a whistleblower lawsuit in Utah. The suit was filed by Judith Pinborough-Zimmerman, who was fired in the middle of working on Utah’s autism rate. It suddenly and inexplicably took a dive -- raising serious questions about how those numbers are obtained, not just in Utah but around the country.
I asked Mark a few questions to try to get my mind around the significance of these major developments.
Dan: I just thought your analysis of the numbers was a really important look at how this sausage is made. Let me start with this: What would be the right way to do a task like this, to track over time a disease or disorder that's of public concern, that people think might be increasing, and that they wanted to get an apples-to-apples comparison for over a period of time. In other words, if they wanted to really figure out was going on, what would they do: What would be best practices as they say in business?
Mark: You'd want to start early enough, in time to observe the trend in the epidemic. Yet the first thing that they (the CDC) do is start their surveillance in 1992, which is by all accounts after the inflection point -- the autism rates were already starting to get elevated by 1992. We know from the data in Brick, New Jersey, that the difference between the rates in the ‘88 and ‘92 birth cohorts was huge -- that was sort of the critical four years when the whole thing turned from zero to about the highest rates ever recorded. (See last slide)
Dan: The EPA has said that 1988 was in fact the inflection point worldwide.
Mark: Exactly, and that inflection point shows up in other places and in other studies. The first two CDC studies were in New Jersey and Georgia. They have the data on Brick Township starting in the 1988 birth year, and Brick is in some of the other New Jersey ADDM surveys.
By the way, we should be supporting data collection in New Jersey, which by all accounts has some of the best collection methods, and has the highest autism rate – 1 in 46 -- in the ADDM system that determines the national rate. (See slides 4, 5 and 6.) Plus we know that in Atlanta the CDC has been doing their own autism surveillance for a while, and has data going back to the1986 birth cohort.
If you wanted to analyze time trends, you would be sure to capture the history before and after an inflection point, so that you could answer the question, What happened and when? That's what an honest effort would do.
Also, as you add states (to the surveillance network), you wouldn't be capricious about putting states in and pulling them out. Utah was in, then Utah was out, now it's back in. Florida was in for a little while, then Florida was out. Alabama was in, then there’s no Alabama. They are fickle in their management of the state network, and all of that just creates noise for a problem at the scale of autism that justifies really aggressive surveillance.
And then you would do things like collect information on the diagnostic categories within autism. The earlier studies were of the narrower full-syndrome autistic disorder. They have now fudged it up almost deliberately by reporting on the wider spectrum, and saying maybe it’s just better diagnosis that is causing the rates to rise.
No it isn’t. Yes, they added a new category in the 1994 DSM, Asperger’s, but in the ADDM studies Asperger’s is just 10 percent of the overall autism total, so they’re blowing smoke if they want to claim adding Asperger’s explains the increases. But that’s want they want to do -- they want to spin it to take a 10-fold increase and say, “Look how much better we’re doing! We’re so much more aware of autism.”
When you've got a real increase that is tenfold, it boggles the mind that they can somehow spread this lie that it's all just better diagnosis.
Dan: So I started by asking what's the right way to do this. It sounds like what they're doing is kind of the opposite – it’s what you would do if you wanted to manipulate the data. And because of the Utah situation, we can actually see that happening for the first time. Is that right?
Mark: Yes, in reading the court documents, it appears like they were putting a lot of pressure on Judith Zimmerman (at the University of Utah) to do unethical things. According to the complaint, she stood up to it and then they put more pressure on her and she complained, and they went after her and made all sorts of accusations. It's likely she believed the increase was real, because she did research on environmental causation. I can’t imagine the genetics folks there liking that. My suspicion is that there was a bit of a wink and a nod between the department and the CDC to say let's get Zimmerman out of there, she's a problem.
Otherwise, I don’t think the Utah numbers would have suddenly gone down (see Slide 7, What Happened in Utah?). If it hadn’t, the overall autism rate in the U.S. might have increased to one in 62 or something like that. There were “uncorrected errors,” Zimmerman alleges, that got all the way into the final data – that’s part of what the lawsuit is about.
Dan: It's reasonable to wonder whether this might be going on more broadly, to state it mildly. It seems like kind of a pattern where they have so many buttons they can push at their little dashboard of tracking the rate, that who knows what the rate really is and what the trend line is?
Mark: It's probably one or 2% of kids. It probably varies a fair bit between states. That’s another thing they don't do – they don’t include a fair sampling of states with the highest rates, other than New Jersey.
California has never made it in. California is pretty high. There’s Maryland, Minnesota, Oregon, Maine -- all among the highest in the educational data -- and they're not in. Massachusetts is very high, Michigan is high -- eight or 10 states are higher than New Jersey in the educational data and they should have been in there.
You would think they’d want a full range. There is variation; it looks like there's a north-south gradient. Oregon and Minnesota stand out, Maine stands out, Massachusetts stands out. New Jersey’s not the only state with a high autism rate.
So you’d want the sample to include the full range of the problem, from worst to best. You also want to understand where the problem is the worst because there might be some kind of environmental clue in that.
Dan: Exactly. So this is not best practices to take on a task like this and do it this way. I mean, they've done a very bad job.
Mark: Yes, since you presumably are trying to find answers to the root causes of autism. When it comes to tracking infectious disease, the CDC gets everything, everywhere – they’re extremely rigorous in tracking infectious disease.
Dan: Right. We’ve talked about what a good job they did in the beginning of AIDS as opposed to the rest of the government. So I guess this would be my insipid question: why wouldn't the CDC want to get this right?
Mark: I don't think they have an interest in finding a problem. They understand that the implications of a real order of magnitude increase would be huge. If they admitted that, the responsibility on them would be enormous to find a cause. To the extent that the possibility might be real, that the cause might include vaccines, they wouldn’t want to find it.
Me: They don't want to find it because they would be implicated by recommending the vaccination schedule, just to state the obvious?
Dan: As my mother would say, a guilty conscience needs no accuser. Doesn’t this kind of suggest consciousness of guilt? Why else would they not do it in a way that any reasonable businessperson or statistician would accept? That’s what I’m trying to figure out.
Mark: It points to a culture. It points to leadership. It points to what is rewarded and what is punished. It points to all of it. Coleen Boyle started as a midlevel analyst and now she's running autism (at the CDC as Director of the National Center on Birth Defects and Disabilities). She's being rewarded for tucking away the problem. She's also in there supervising Thompson [William Thompson, CDC whistleblower on a manipulated MMR study] and the notes show her giving him orders, telling him to redesign it this way, tweak it that way.
So whether it’s time trends or vaccines, if they tweak the studies enough they can say, oh we don't know if the increase is real but we do know we're doing a better job diagnosing it. And people like Coleen Boyle are the ones who stick around while Thompson is intimidated, Thomas Verstraeten [who did a key thimerosal study] is shipped out of the country, and Judith Zimmerman gets fired from her job in Utah.
There is this little economy of all these people who subsist on government grants. They’re used to things being kind of orderly and not that controversial and this one is just way too big. It requires leadership and continuous management over time. Coleen Boyle is clearly one of the leaders and, in my opinion, is the single-most-guilty person in the whole thing.
Me: “Continuous management over time” is another word for ongoing cover-up isn’t it?
Mark: Yes exactly. They’ve got an orthodoxy of interpretation. There's a “right way” to look at the data and a “wrong way” to look at the data; there are “good outcomes” and there are “bad outcomes.” It’s not an even-handed, straight-up view of the facts.
They will advertise the hell out of the studies that advance their policies and will tweak until it's acceptable any inconvenient evidence to the contrary. So it's really biased. It requires management. And it’s a moral choice.
Me: Yes, and a pretty serious choice when you think about the ongoing numbers – 1 in 68. It seems to me like we’re watching them succeed at this at the moment. It just seems so malignant that I wonder how to stop it.
Mark: I don't know. But I think at some level we have a little microcosm here of things that are enraging all kinds of Americans against the establishment, coming from the left, from the right, from libertarians, from the Tea Party. There’s a range of very fundamental critiques of Washington – a primal scream that says let's change the culture in Washington.
Me: Maybe that's hopeful -- the idea that this is part of a pattern that is becoming more and more evident to people of all stripes, who are maybe more open to looking at things freshly.
Anyway, thanks for shedding light on all this. I think it’s an important thing to do.
Mark: You bet.