AUTISM: WHAT DID CDC KNOW AND WHEN DID THEY KNOW IT?

[Guest guest]

AGE OF AUTISM

Editor: Dan Olmsted

 

12/20/2007

AUTISM: WHAT DID CDC KNOW AND WHEN DID THEY KNOW IT?

Part 2 of 2

By Mark Blaxill

From

the start of their activities in the Brick Township New Jersey autism

study, the CDC's approach had been nothing short of diligent and

competent. They responded rapidly to an expression of community concern

and fielded a team that began what seemed to be all the right kind of

work on the ground. The team generated a response within weeks of

mobilizing. They held a press conference to express their support for

community concerns about elevated autism rates. If not a virtuoso

performance, it was certainly professional. Then something changed. After their January 1999 press conference, the CDC team went underground.

After

many months of active communication and prompt response, they ceased

all communication with Bobbie Gallagher and other member of the Brick

POSSE that had first noticed the surprisingly high number of autism

cases in 3-4 year olds in Brick. Team members explained that higher-ups

were concerned about the way the team had communicated their findings

publicly, using the terms "elevated" and "cluster" in describing the

autism situation. Vague political rumors circulated as an explanation

for the new sensitivity from Washington DC..

But whatever the cause, it wasn't until well over a year later, April

2000, that the CDC's Brick study

team would resurface. And when they did, all talk of a cluster was

gone. All concern expressed in mid 1997 for the surge in 3-4 year old

kids (who were 4-6 years old attained age in 1998) was gone as well.

Politics and public relations priorities, it seems, had taken

precedence.

There

was, to be sure, more work to be done after January 1999. The team

added more autism cases to its count of "over 40" reported in their

first press conference. By the time of their final report in April

2000, the CDC had identified 60 cases of autism spectrum disorder (ASD)

in a population of just 8,900 children between the ages of three and

ten. This rate, 1 in 150 children, was the highest autism rate ever

reported anywhere in the world up to that time, and might even have

understated the real rate. Bobbie Gallagher believed the CDC's count

left out quite a few families that had left Brick and that an approach

that accounted for migration would have yielded over 70 cases.

But

by early 1999, the CDC team had virtually all the information it would

ever get on autism rates in Brick. What did they do with that

information?

They

had two questions they really needed to address in any final report.

The first was the issue of local environmental toxins: the kind of

industrial contamination that might have provoked a Brick autism

cluster. The Brick POSSE certainly believed that they had discovered a

cluster. Bobbie Gallagher thought that there was something in the

water. And so there was great concern over specific chemicals that

might be harming their unborn children. Gallagher expressed skepticism

that vaccines had anything to do with her own children's autism. "It's

possible that vaccines are a factor in some families, but I don't think

that's what happened with my two children", she told me. "I brought two

autistic babies back from the hospital."

So

with the support of local parents, the CDC team focused on water

quality. And they had a specific hypothesis about the nature of the

contamination. The CDC team member from Agency for Toxic Substances and

Disease Registry (ATSDR) had written a paper just a few years before

that linked trihalomethanes (THMs) to a variety of birth defects,

including neural tube defects. Frank Bove (who according to Gallagher

had two autistic children himself) believed that these neural tube

defects could be the key missing piece in the puzzle. Bove consulted

with Patricia Rodier, a researcher from Rochester

who had worked on toxins that she believed could cause neural tube

defects in autism. And the ATSDR report on Brick went on at some length

about their

concerns over THMs and neural tube defects. But in Bove's analysis of

Brick's autism cases and THM exposure, there was no smoking gun. In

fact, any way they cut the data, they could find no link between the

elevated THM rates in the local water supply and the local autism cases.

In

short, ATSDR's search for a singular environmental toxin came up empty.

So despite autism rates in Brick that were far higher than anything

ever seen before, CDC and ATSDR were unwilling to declare the Brick

community an autism cluster. To this day, autism rates in NJ are among

the highest in the nation and among the highest reported anywhere in

the world (one recent survey reported a rate of 1 in 93 children). But

in part because no obvious and easy toxin presented itself for blame

and removal, the CDC took no position. And they pursued the issue no

further.

The

second question on the CDC's plate was the question of the rising trend

in autism rates. In Gallagher's support group meeting in 1997, everyone

had remarked on the unusually large numbers of 3-4 year old cases. And

by January of 1999, the CDC had a great deal of data on ages and birth

years of their affected population. Their conclusion on trend? In a

classic bit of statistical doublespeak, they declared that there was no

support for higher autism rates in younger children. "Age-specific

rates were calculated for preschool (3- to 5-year-old) and school-aged

(6- to 10-year-old) children...CIs [confidence intervals] for the 2 age

groups overlapped, indicating that the prevalence rates for the 2

age-groups were not different."

But

how could this be true? It seemed to fly in the face of everything

observed by the parents and professionals on the ground, not to mention

the hints that the CDC had been hearing for years about rising autism

rates all over the country. Unlike the search for environmental toxins

in the water, there was nothing all that complicated about the trend.

Either there were more cases or there weren't. And if the rates were

rising, however hard it might be to pin down the cause, it was

important to keep looking, because too many children were sick.

In mid 2002, it occurred to a few of us at SafeMinds that the CDC's conclusion in their Brick Township

report was likely to be flawed. Not only was the rising trend apparent

in their data, there were also a number of odd elements in their design

and write up. For one thing, the age groupings were

strangeâ€â€separating the sample into two groups of unequal size, 3-5

and 6-10 year olds. Why would they not divide the population into equal

sizes, putting 3-6 year olds together and 7-10 year olds? For another,

as I had learned in examining Lisa Croen's claims of diagnostic

substitution in California, autism time trends

can be easily

misinterpreted if the analysts don't factor in the lag time that the

youngest children face in getting recognized (the technical term is

"ascertainment bias"). What if the Brick team had, as most survey team

had done before them, simply undercounted three year olds?

So

Sallie Bernard sent an email to Frank DeStefano of the CDC, whom she

had met at a recent meeting. She asked him what would happen to the

Brick rates with 3 year olds removed. And he responded in a May 10,

2002 email, "For overall ASD, the prevaleces (sic) were: 10.2 per 1,000

among children 4-6 years old, 4.4 per 1,000 among those 7-10 years

old." Sallie promptly thanked him and noticing that this rate

differential seemed larger than the published study, asked him if these

were statistically significant. DeStefano's response was telling.

"The

results are based on 35 cases out of an estimated 3442 children 4-6

years of age, and 19 cases out of an estimated 4272 children 7-10 years

of age. The difference in prevalences noted below is statistically

significant." [emphasis added] In other words the published conclusion changed completely if you simply removed a single age group, the three year olds. Despite

providing a stunning admission, DeStefano had still not given us what

we really wanted, which was the breakdown by age category. So Sallie

asked him again. And a few months later, she received this response

from Marshalyn Yeargin-Allsopp "Hi Sallie, Happy New Year! Frank Destefano has asked me to respond to your question about rates of autistic disorder for Brick Township.

They are: (per 1000), rounded3 yo 2.5 4 yo 6.1 5 yo 7.8 6 yo 7.0 7 yo 6..4 8 yo 2.0 9 yo ---- 10 yo ---- TOTAL 4.0"This

was even more of a shocker. What Yeargin-Allsopp had revealed was that

there was not a single case of full syndrome autism in the entire Brick Township

population of nine and ten year olds . This was a different case

definition than the one DeStefano had given us, which included PDD NOS

and Asperger's cases. But it provided clear statistical support for the

parental concern over the

unusual number of cases in the younger children. And here it was in

black and white -- the CDC had this data all along.So on the second crucial part of their charge, the evidence was clear. The CDC knew there was an autism epidemic in Brick Township

in 1998. And they neither said nor did anything about it. In fact, they

did exactly the opposite: they used a clever bit of statistical

trickery to cover it up.How clever was it? Well once you have

the real trend data, you can figure out how hard the CDC had to work in

order to report a result that said there was no trend. And in the

months between January 1999 and April of 2000, the CDC figured out just

about the only possible way to claim that autism rates weren't rising.

They took the 6-10 year group, one where autism rates rose from 0 to 1

in 143 and put them into one bucket.

They took the 3-5 year old group, which due to ascertainment bias had a

declining rate (from 1 in 128 to 1 in 394) and put them into another

bucket. And they compared these two ratios and reported that their was

no significance to the rising trend. And if you run the statistics on

just this arrangement of the data, they are correct.But

the problem with this approach is that it's too clever by half.

Virtually every other reasonable grouping shows a significant increase.•

DeStefano's analysis comparing ASD rates in 4-6 year olds with 7-10

year olds gave a significant increase, with 99% confidence (statistical

"significance" kicks in at the 95% confidence level).• If

you take the full syndrome autism group and divide it into two equally

sized buckets, comparing 3-6 year olds and 7-10 year olds, you also get

a significant result with 99% confidence.• If you take the 5-6 year old group of full syndrome

kids and compare it to the 9-10 year old kids, you get an even more significant finding, more than 99.9% confidence. As the saying goes, there are lies, damned lie and statistics. If this wasn't a cover up, I don't know what else to call it.For

some, myself included, a picture is worth a thousand words. And if the

problem in Brick was indeed more than a cluster, if there was a broader

national trend towards rising autism rates, then what matters is not

just the age of the Brick children, but their birth years. A more

consistent national trend would be revealed if we could find similar

changes in autism rates in the same birth years. And a clear picture of

the increasing trend would help us identify the kinds of environmental

causes that weren't just local toxins in the Brick water supply.The

Brick study provided the first data that could paint this picture and

show the specific turning point in autism rates. The age groupings in

the

Brick team's study were based on the "attained age in 1998", so the

ages are easily converted to birth years. Every child who attained the

age of three in 1998 was born in 1995, the four year olds were born in

1996 and so on, up to the ten year olds, who were born in 1988. The

chart below shows the data Yeargin-Allsopp sent to Sallie Bernard and

compares it to the data the CDC published. As you can see, the rates

exploded in the years 1990-94 birth years and then dropped off a bit in

the 3 year olds, due to the ascertainment effect. Looking at the

numbers year by year (the dotted line), and comparing them to the

published rates (the flat solid line), it's easy to see just how

deceptive the CDC's reported findings truly were.

As

I said in part 1, there is a moment of truth in the life of any

institution. And here was the moment for the CDC, the crucial point

"when they proceeded from uncertainty, to confusion, to (perhaps if

we're charitable) error and then to a policy commitment," as I put it

in Part 1. In this case, attributing the stage after confusion to error

is more charitable than the CDC deserves. Faced with the evidence

pointing to the worst childhood epidemic in modern memory, the CDC

chose to cover it up. When you have the real data, the numbers

literally jumped off the page. But the only published finding was "no

trend", the only commentary, bland reassurance.What kind of

pressure would make professional people do something like this? After

such a diligent and responsive start, such a spirit of openness and

candor, what moved the CDC team to put their head in the sand and walk

away?It's worth remembering what happened in the period between January 1999 and April 2000. Most of Washington DC was consumed with the impeachment proceedings ending in Clinton's

acquittal on February 12, 1999. In March 1999, just two months after

the CDC press conference the California Department of Developmental

Services issued their own report showing the sharp increases of autism

rates in California. A few months after that, in

July 1999, the Public Health Service announced its plans to remove

thimerosal from childhood vaccines. So as the team completed their

work, it's almost certain that the public posture the CDC would take in

the Brick report took an added importance. After

all, as the chart shows, the real surge in Brick was in line with the

expansion in the required immunization program, certainly correlated

with thimerosal exposure. So there's little doubt that the CDC was

worried about its own role in provoking an autism epidemic. At the same

time, as the durable evidence of elevated rates in New Jersey have

shown, there was also perhaps part of something even more complex.

Speculation aside, however, this was a moment of choice. And in a

moment that required continued professionalism, openness and candor,

something else happened. It was pretty pathetic.In

April 2000, after many months of silence Bobbie Gallagher got a call

from the CDC. They were coming to town to release their study, both the

CDC prevalence report and the ATSDR analysis of local toxins. They came

to her house, gave her two lengthy documents, asked her to respond in

the moment if she had any questions. They confessed that the autism

rates in

Brick were three times higher than rates they were seeing elsewhere.

But they had no plans to do anything more about it.Then

they left the Gallagher's' house to go to the public meeting, where

they took the same basic approach. They made no presentations, simply

put the two reports on the table and made themselves available for

questions. They had two sessions, one for the press and one for the

residents.And at the front of the room, Gallagher reports that

there were two groups of people. One was the familiar team, Bove, Mars,

Bertrand, who had done the work and been part of the initial outreach.

Next to them was another group "we had never seen before." Their job,

according to Gallagher, was to watch the original group and "make sure

nobody said the wrong thing." At 8:00 PM, the session ended and "you've

never seen a group leave a room so fast.""And we never heard from any of them ever again."

Mark Blaxill is Editor At Large for Age of Autism.

ely | 12/20/2007 at 09:47 AM

 

 

Amita Pitre,

A-702, Legend Apartments,

Vakola, Santacruz (E),

Mumbai, India, 400 055"It is now 30 years since I have been confining myself to the treatment ofchronic diseases. During those 30 years I have run against so many histories of littlechildren who had never seen a sick day until they were vaccinated and who, in the severalyears that have followed, have never seen a well day since. I couldn't put my finger onthe disease they have. They just weren't strong. Their resistance was gone.. They wereperfectly well before they were vaccinated. They have never been well since. "---Dr. William Howard Hay

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