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Utah Whistleblower Lawsuit Alleges Data Errors and Research Misconduct as CDC Report Releases U.S. Autism Rate of 1.5%

Health choiceFrom HealthChoice.org.

March 31, 2016

The CDC announced today an autism rate of 1 in 68 children (1.5% of eight year olds surveyed in 2012) for those born in 2004, unchanged from the last reported rate for children born in 2002. Meanwhile, the United States District Court for the District of Utah is preparing to hear critical motions on April 4th from a former CDC researcher and whistleblower. Although the lawsuit is directed primarily to the University of Utah, the whistleblower has also alleged that the CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network, allowed research misconduct and persistent data errors in their autism prevalence reports. These whistleblower allegations reveal serious concerns over the legitimacy and integrity of the CDC’s management of its widely cited ADDM Network reports.

In documents filed on January 4, 2016 in the Federal District Court, District of Utah, (Case No. 2:13-cv-1131) the former Principal Investigator for the Utah ADDM Network site, Judith Pinborough-Zimmerman asked for the right to a jury trial to adjudicate a range of claims against her employer, the University of Utah, with respect to Zimmerman’s work as an autism researcher for the ADDM Network. According to the January 4 motion, “Dr. Zimmerman was a successful University employee until she accused [her supervisor], among others, of research misconduct and ethical misconduct. Defendants retaliated against Dr. Zimmerman for raising legal and ethical questions of employees’ impropriety, and took multiple adverse actions against Dr. Zimmerman because of her protected speech; her age; her disability; and her religion. Defendants also breached its contract with Dr. Zimmerman and denied her due process and liberty rights.”

Zimmerman’s complaint includes specific concerns over alleged uncorrected errors in the ADDM Network’s reported autism analysis for Utah. Zimmerman “reported that [university researchers] were publishing data under people’s names who had not done the work and that the data contained uncorrected errors. [emphasis added]” Dr. Zimmerman further testified, “I think the fact that I reported data errors, research misconduct, is significant.” According to the lawsuit, knowledge of these errors was not confined to Utah. “On or about December 2012, Dr. Zimmerman also reported the same concerns she had made to the University’s Privacy & Security office to the United States Department of Health and Human Services…. She reported her concerns to the CDC as well. “

Depositions from Zimmerman and her former colleagues suggest that the alleged data errors were serious and have the potential to produce major differences in reported Utah autism rates. In the 2008 ADDM Network Report, Utah autism rates were the highest in the country at 1 in 47. In the 2012 report released today, Utah rates plummeted nearly 20% to 1 in 58 as most other ADDM Network sites reported either rising or stable autism rates.

Health Choice has long criticized the design and management of CDC’s ADDM Network autism prevalence surveys. “The CDC has been misrepresenting the alarming rise in autism rates since the late 1980s,” says Health Choice Executive Leadership Team Chairman Mark Blaxill. His Health Choice analysis, “   The Autism Emergency Continues 1 in 68  born in 2004 released today (see 11 slides below) outlines a number of criticisms of the CDC’s surveillance program. “They have selected a partial and unrepresentative sample of states to track, changed the sample in a biased fashion over the years, and then take too long to report out the data. Today’s 2012 report is over a decade behind the problem, giving us autism rates for children born twelve years ago.”

In addition to Utah, today’s report outlines concerns in Georgia and New Jersey. “If the sharp increases in autism rates began in the late 1980s,” asks Blaxill, “why would CDC design a tracking survey beginning with the 1992 birth year? Elsewhere, they’ve published data with very low rates from the late 1980s in New Jersey and Georgia but don’t connect the dots in the ADDM publications from today’s 1 in 68 rate back to these earlier numbers.”

Health Choice, a non-profit organization whose majority is made up of family members dealing with autism, expressed deep concern about Dr. Zimmerman’s lawsuit. Health Choice’s Executive Leadership Team Chairman Mark Blaxill stated, “Health Choice is very worried that the CDC’s ADDM Network reporting is not accurately representing the seriousness of the autism epidemic. For most affected individuals, autism is a lifelong disability, a condition that frequently wreaks havoc on families, school systems, and state resources.” Mr. Blaxill went on to say, “since 1990, autism rates have exploded: something new and terrible is happening to a generation of children “It’s time to for the CDC stop sugar coating the inconvenient facts and confess that we have a national emergency so we can finally get to the bottom of this tragic problem.”

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Health Choice is a non-profit organization focusing on awareness of health choices, education on nutrition, healing, and prevention of chronic illnesses for children and adults.

View in pdf THE AUTISM EMERGENCY CONTINUES

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Comments

Ray Gallup

Per.........


John S.

You must recall that the CDC folks pulled a similar stunt in February 2007 when they issued a Press Release stating:“The Centers for Disease Control and Prevention (CDC) reported findings today from the first and largest summary of prevalence data from multiple U.S. communities participating in an autism spectrum disorder (ASD) surveillance project. The results showed an average of 6.7 children out of 1,000 had an ASD in the six communities assessed in 2000, and an average of 6.6 children out of 1,000 having an ASD in the 14 communities included in the 2002 study. All children in the studies were eight years old because previous research has shown that most children with an ASD have been identified by this age for services.”

Ray Gallup and I reviewed the available statistics at the time and we found out and published that 1 in 150 was really 1 in 67.
http://www.whale.to/v/yazbak44.html


Posted by: Ed Yazbak | April 01, 2016 at 09:46 AM


Dr. Yazbak and I came out with that study before the CDC came out with the same exact numbers some time after we did that article. It truly makes one to think if the CDC was just copying our information and putting it out there as something they found??

Recent information has come out from Rutgers by Walter Zahorodny saying one in 41 for ASD in NJ per:

http://njms.rutgers.edu/departments/pediatrics/njas/

chemfreemom

This is only going to get worse as long as the corrupt political elite establishment is running our country. It includes both liberal and conservatives and they care nothing for American citizens, but only for industries who line their pockets. It may be too late, but our only hope is if one of the two anti-establishment candidates win by a landslide, because it will be harder for them to manipulate the election to get another establishment candidate, like Clinton or Cruz, in than if it's a close race.

Ed Yazbak

Dr. Kostoff,

Again no argument there. It is a fact that we do focus on autism because of the personal tragedies that have affected our families and we should indeed look at the whole picture of toxic stimuli, autoimmune injuries and other neurological adverse events.

Carol

I guess the implication is that the ICD-9 code for autism, 299.0, was mis-entered, often by substituting a leading "0" for a trailing one, with the result that autism diagnoses were transformed into something different. Then if the errors were discovered, they would look like inadvertent data entry errors (whether they were or not).

John Stone

Ed

Yes I do recall now: they go on playing the same games and they do it both sides of the pond.

John

Ronald Kostoff

Dr. Yazbak,

" “Results — The estimated prevalence of ASD based on 2014 data was 2.24%, a significant increase from the estimated annualized prevalence of 1.25% based on 2011–2013 data”. "

Two comments. First, the study also states that "the overall prevalence of children with either ASD or other DD did not change between 2011–2013 (5.26%) and 2014 (5.30%)." That tells me focusing on ASD may be overly restrictive for purposes of assessing damage from vaccines and other environmental contributing factors. We're letting arbitrary definitions drive the analysis, rather than the science. If one of the main characteristics of these toxic stimuli in combination is neuroinflammation, why wouldn't the broader category of neurodevelopmental adverse effects be a more appropriate metric than only ASD or ADHD or .....? I've talked with people who have taught in the elementary schools for three or four decades. They have stated that when they started, one child in a class of ~thirty with such problems would not be all that frequent. Now, they are finding ten-twenty percent of the class with those types of problems not at all uncommon, if one includes ASD, ADHD, et al. These numbers are closer to the >5% numbers listed above.

Second, your reference states: "Children with ASD were mostly male.... and non-Hispanic white ..... living in families in large MSAs .... with two parents ..... and with at least one parent who had more than a high school level of education." It also states: "Parents were asked: ‘‘Did a doctor or health professional ever tell you that [child’s name] had autism, Asperger’s disorder, pervasive developmental disorder, or autism spectrum disorder?’’"

Thus, the researchers did not ascertain INDEPENDENTLY whether the child had any of these disorders. They relied on the parents' relaying a doctor's diagnosis of their child. This assumes 1) that their child visited a doctor who could make an accurate diagnosis, 2) that the doctor in fact made the proper diagnosis, 3) that the parent understood the diagnosis, and 4) that the parent relayed the diagnosis accurately to the interviewer. If any of these assumptions is invalid, then the numbers will (probably) be underestimated.

Given the characteristics of the children summarized above, it seems that minority children were under-represented. That would not be surprising; they, on average, probably have less health care, and probably see a doctor less frequently than majority children, especially the type of specialists needed to make a proper diagnosis. If Thompson's allegations are correct, these minority children might be both more susceptible to toxic environmental stimuli such as vaccines et al, and might be more exposed to other types of environmental toxic stimuli as well.

Finally, the organization that conducted the survey is part of the CDC. Given what Dr. Thompson has alleged about the misconduct of the CDC relative to the link between MMR vaccine and autism, why would you give ANY credence to numbers that they generate? Look at the report you cite. A number of references contain some of the co-authors of the infamous 2004 paper in Pediatrics that Thompson alleges was ripe with misconduct. At best, we might view the >5% neurodevelopmental estimate as a FLOOR. The real number might be closer to what the teachers have conveyed to me, and, in fact, even the teachers are seeing only that subset of children with neurodevedlopmental disorders that are able to go to their school. I shudder to think of what the real numbers would be like if all children with these problems were identified accurately!

Ed Yazbak

John S.

You must recall that the CDC folks pulled a similar stunt in February 2007 when they issued a Press Release stating:“The Centers for Disease Control and Prevention (CDC) reported findings today from the first and largest summary of prevalence data from multiple U.S. communities participating in an autism spectrum disorder (ASD) surveillance project. The results showed an average of 6.7 children out of 1,000 had an ASD in the six communities assessed in 2000, and an average of 6.6 children out of 1,000 having an ASD in the 14 communities included in the 2002 study. All children in the studies were eight years old because previous research has shown that most children with an ASD have been identified by this age for services.”

Ray Gallup and I reviewed the available statistics at the time and we found out and published that 1 in 150 was really 1 in 67.
http://www.whale.to/v/yazbak44.html


John Stone

Ed

So 1 in 45

BTW In Britain we have RIRO (Rubbish In Rubbish Out)

Ed Yazbak

John Stone

You mean you also have GIGO in England?

(Garbage IN-Garbage OUT: Give nonsensical instructions to computers and they will produce nonsensical results.)

Referring to more reliable statistics from the US National Health Statistics Reports (Report 87 - 11/13/2015)

"Estimated Prevalence of Autism and Other Developmental Disabilities Following Questionnaire Changes in the 2014 National Health Interview Survey" by Benjamin Zablotsky, Ph.D. and Lindsey I. Black, M.P.H., National Center for Health Statistics; Matthew J. Maenner, Ph.D. and Laura A. Schieve, Ph.D., National Center on Birth Defects and Developmental Disabilities; and Stephen J. Blumberg, Ph.D., National Center for Health Statistics

“Results — The estimated prevalence of ASD based on 2014 data was 2.24%, a significant increase from the estimated annualized prevalence of 1.25% based on 2011–2013 data”.
http://www.cdc.gov/nchs/data/nhsr/nhsr087.pdf

---

So Sad!

Susan

At my children's elementary school there'a a teacher and two teaching assistants in every class because there are so many children on the spectrum or with learning difficulties these days.
In the second grade class there are three kids on the autism spectrum. (These are children born in 2008). I don't know about first grade and kindergarten but they probably have similar numbers. If other schools are like this it would mean the autism rate is around 10% for babies born in 2008.

Hans Litten

James Grundvig , are you able to tell us more about this Poul Thoresen book ?

Linda1

"The CDC announced today an autism rate of 1 in 68 children (1.5% of eight year olds surveyed in 2012) for those born in 2004, unchanged from the last reported rate for children born in 2002."

Apparently the CDC has seen the trailer to Vaxxed where Dr. Seneff explains that by 2032 80% of boys born will be autistic. It seems the CDC had to rush some bogus stats out ahead of the film's premiere this weekend.

They could not be more obvious.

Reader

1 in 68 is obviously false. Ask anyone in spec ed.

researcher

Utah has had THE highest rate of autism, as well as extremely high vaccine uptake rates, thanks to a compliant Mormon population.

No wonder they want to cook the books.

Linda1

Well, maybe some of the Utah cases had to be omitted because they didn't have Utah birth certificates.

Sue

It is time to demand that all government employees are held accountable for their actions, and fire most of these corrupt ones and as for the department heads, well, put them all in prison

Tim Lundeen

@james grundvig I've preordered your book from http://www.amazon.com/Master-Manipulator-Explosive-Embezzlement-Government/dp/151070843X/ref=sr_1_1?ie=UTF8&qid=1459453006&sr=8-1&keywords=Master+Manipulator+James+Grundvig -- hope it does well!

Jeannette Bishop

Thank you for this alert.

A fruitless couple of searches about this topic brought up another study I missed (though it's probably old news to most):

http://www.ncbi.nlm.nih.gov/pubmedhealth/behindtheheadlines/news/2016-03-21-people-with-autism-are-dying-younger-warns-study/

http://ki.se/en/news/people-with-autism-run-a-higher-risk-of-premature-death

James Grundvig

I heard through the wind chimes that PR Web, the press release newswire on the Internet, rejected publishing the presser around this article and its findings. So it appears that censorship exists outside the small orbit of Robert De Niro and Tribeca Film Festival. It will be interesting to see if I have that same experience when I send out the presser on my Poul Thorsen book, Master Manipulator, in late April.

Benedetta

You all knew they were cooking hard some years back as they changed the protocols in the DSM books.

They told us all right there in the IACC meeting. She (forgot her name) said they had reduced the numbers of the ones with PDD-NOS and threw them into the communication disorders and other diagnoses.

Sooooo; what is the rise in the stats in the communication

disorders? Hmmm?

John Stone

It would not be surprising if the CDC wanted to lose some autism cases: the Department of Health froze the figure in the UK at 1% for children in 2004 and have not revisited the issue for over a decade apart from their attempt to inflate the adult figures to be in line:

http://www.ageofautism.com/2016/02/the-true-data-revealed-adult-autism-data-fabrication-in-the-united-kingdom-part-3.html

I will update on the British situation in the next few days.

Hans Litten

Fair play to Dr Zimmerman (I wish you well)

So this is the latest dirty trick - cooking the books on top of the maiming and the carnage . There are no depths to which the CDC will not stoop !

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