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Autism Speaks Mangles the Poling Decision: NYT Blog Adds Insult

Posted Sep 16 2010 12:00am

Children mangle By J.B. Handley
 
On the one hand, I get it. Autism Speaks treads a very delicate balance in how they address the idea that vaccines might be causing all this autism. If they are too strongly supportive of the hypothesis—poof!—away goes so much of the money that allows all the employees and researchers affiliated with Autism Speaks to put food on the table for their families.
 
On the other hand, Autism Speaks may well be enabling the autism epidemic to continue by parsing their words so carefully (and at times just plain lying). If our community is right, and of course I believe we are, Autism Speaks and all its researchers and employees will have to account for their complacency in a time of crisis to future generations.
 
Personally, I believe most of the roads of causation research end at the vaccine schedule. At some point, with hundreds of millions of dollars spent, Autism Speaks is going to need to show something for their labor. So far, they haven’t produced one shred of information that has either reduced the number of autism cases or increased the number of recovered children. It’s a track record of nothingness. Congratulations.
 
To their credit, Autism Speaks actually addressed the Hannah Poling court case decision through their official blog (and they also highlighted it on their home page)  HERE .
 
The blog post provides the following background 
“Hannah was developing typically until a regressive episode at 18 months that closely followed the 9 vaccinations she received at a well-baby visit.  Further testing revealed that Hannah 1) developed autism and 2) had the metabolic signature of a mitochondrial disorder which may have made her vulnerable to injury from the vaccines themselves or the fever that commonly accompanies vaccines and many childhood illnesses.”
 
Then, using a Q&A approach, Autism Speaks tries to mangle and confuse the Poling decision into nothingness. My criticisms follow 
1. Nowhere is the size of the judgment, roughly $20 million, even mentioned.
 
It’s a form of bias to exclude information that may cause the case to seem larger than Autism Speaks would like it to be by not being comprehensive in mentioning the size of the award to the Poling family. $20 million is a lot of donuts, and someone at AS actually chose to edit that out or not mention it.
 
2. As with every other vaccine apologist, Autism Speaks uses Hannah’s reported “mitochondrial disorder” to try to explain away her reaction to so many vaccines.
 
When you hear people like Paul Offit discuss the Hannah Poling decision, they try to make it sound like she was “suffering” from some extremely rare form of genetic disorder that no other kid in America has. They have to. If Hannah’s disorder could have actually been induced by a vaccine or if it’s more common than Offit represents, the world as we know it would end, so Offit and others happily spread wild misinformation. (Yes, Amy Wallace, Paul Offit lies. He lies. He lies.)


 
Autism Speaks doesn’t go quite that far in their post, but they make sure the reader is left both confused and thinking that maybe Hannah’s case is exceptional 
“The field of mitochondrial medicine is relatively young, but growing in importance.  The United Mitochondrial Disease Foundation (UMDF), with whom Autism Speaks has partnered in an effort to learn more about mitochondrial disorders and autism, reports  “while exact numbers of children and adults suffering from mitochondrial disease are hard to determine because so many people who suffer from mitochondrial disease are frequently misdiagnosed, we now know the disease is approaching the frequency of childhood cancers.” 

Mitochondrial disorders are more broadly defined and therefore possibly more frequent than frank mitochondrial disease, which is typically defined by identifying a known causative mutation.  For more on mitochondrial disease and disorders, please see  What Is Mitochondrial Disease? on the UMDF website.

Testing for mitochondrial disorders is notoriously difficult in part because the field is young and misdiagnoses are common.  However, identifying dysfunctional mitochondria in autism and mitochondrial disorders is an area where Autism Speaks has invested in a   High Risk, High Impact grant ( HERE ) from Autism Speaks awarded to expert clinicians and researchers investigating mitochondrial disorders at University of California at Irvine and University of California, San Diego.  Through research and partnership with the UMDF (read story about our recent joint symposium ), we hope to shed more light on “mitochondrial autism,” including how it is identified and how best to treat it.”
 
*        *        *
 
Did you get all that? I didn’t. And, I’ve now read it three times. What I think I heard was something like this: mitochondrial research is in its infancy; many are misdiagnosed so no one really knows how many people have it; someone is playing word games with “mitochondrial disorders”, “mitochondrial disease” and “frank mitochondrial disease (who is Frank, anyway?)” in a way that has confused the hell out of me; and please stay tuned because Autism Speaks will figure it out at some point. That’s it.
 
Well, why bother scaring anyone with the truth, right? I have no doubt AS has seen a study from Portugal, published in 2007, available for you to read right HERE , a study that looked at over 300,000 Portuguese children, and reached the following conclusion 
“In this study, the prevalence of ASD in a southern European country was estimated for the first time through the survey of a large target population and direct observation of children, applying formal diagnostic instruments. In this population-based study, the frequency of medical conditions associated with ASD was determined, uncovering a high frequency of mitochondrial dysfunction in the children with autism.”
 
AS, in case you’re reading this, I’m going to highlight one little part of that conclusion for you, just in case you missed it 
“uncovering a high frequency of mitochondrial dysfunction in the children with autism.”
 
In 2008, David Kirby reported the following 
“In the recent landmark Hannah Poling case, filed in Federal "Vaccine Court," officials conceded that Hannah's underlying mitochondrial dysfunction was aggravated by her vaccines, leading to fever and an "immune stimulation that exceeded metabolic reserves."
 
But on March 6, CDC Director Dr. Julie Gerberding claimed that Hannah's case was a rare, virtually one-of-a-kind incident with little, if any relevance to the other 4,900 autism claims currently pending in the court -- or to any other case of autism for that matter.(There were conflicting accounts about whether Gerberding was on the call or not).
 
Since then, however, Dr. Gerberding and other CDC officials were made aware of a Portuguese study, published last October, which reported that 7.2% of children with autism had confirmed mitochondrial disorders. The authors also noted that, "a diversity of associated medical conditions was documented in 20%, with an unexpectedly high rate of mitochondrial respiratory chain disorders."
 
"Apparently, the Portuguese study really got their attention," one of the participants said. "It's a highly significant finding. And it's worrisome enough to definitely look into. I think the CDC people know that."
 
They also know that some reports estimate the rate of mitochondrial dysfunction in autism to be  20% or more . And the rate among children with the regressive sub-type of autism is likely higher still.”
 
*        *        *
 
7.2%? 20% or more? Here’s another  STUDY , Autism Speaks, from Johns Hopkins’ Kennedy Kreiger institute, with that even higher number cited 
“Because our institutions serve a large number of children with developmental disabilities, we have diagnosed a number of metabolic diseases among children with autistic spectrum disorders, including disorders of organic acid, sterol, and mitochondrial metabolism. Among these, mitochondrial disease has been the most common diagnosis and may account for as many as 20% of autistic children.”
 
Does anyone actually believe that Autism Speaks doesn’t have access to the same studies I just cited? If they do, and they wrote what they wrote on their blog, I believe that makes Autism Speaks guilty of being completely full of shit, downplaying the court case decision and trying to confuse the hell out of parents regarding mitochondrial disease/dysfunction, and writing something that encourages parents to fully vaccinate their children through categorically false reassurances. But, that’s just one Dad’s opinion.
 
 
3. Worst of all, Autism Speaks uses the “Hungry Lie” about the research that has actually been done regarding vaccines and autism to, once again, FALSELY reassure parents.
 
This drives me absolutely nuts. If you spend even an hour researching this issue, you realize how remarkably stupid this really is. Let me explain 
First, Autism Speaks writes the following 
“Hannah was developing typically until a regressive episode at 18 months that closely followed the 9 vaccinations she received at a well-baby visit.”
 
Later, to reassure parents, they write 
“Several epidemiological studies have explored whether either the MMR vaccine or thimerosal, a preservative previously used in vaccines, are linked to autism, and these studies have not supported a link.”
 
Are you tracking with me yet? Hannah got 9 vaccines. One was the MMR. The other eight were not. They were all given at once. But, parents, don’t worry, studies have been done that have absolutely nothing to do with what happened to Hannah so go ahead and vaccinate. It is a 100% non-sequitor!!
 
Let’s try an analogy. Heath Ledger apparently died from a cocktail of many different prescription drugs all taken at one time. But, hey people, don’t worry, please feel free to take everything he took all at once, his was a rare event and both aspirin and one of the 10 drugs he took have been proven safe, so please take them all and stop your worrying!
 
Autism Speaks, how stupid do you think parents are? Here’s Jon Poling, Hannah’s father, discussing her case (in response to a lie from Paul Offit, because Offit lies, all the time) 
“Offit is frequently cited regarding the “biologically plausible” theory that simultaneous administration of multiple vaccines is safe. His opinion is unsupported by clinical trials, much less investigations in potentially susceptible subpopulations.
 
Despite the high frequency of mitochondrial dysfunction in autistic children, studies have not established primary or secondary roles. To explore this question, we need an immunization database for children with metabolic disorders to establish safety guidelines and improve vaccine safety for minority subgroups of children.
 
I agree with the statement of Bernadine Healy, former director of the National Institutes of Health, who said, “I don't think you should ever turn your back on any scientific hypothesis because you're afraid of what it might show. . . . If you know that susceptible group, you can save those children. If you turn your back on the notion there is a susceptible group . . . what can I say?” Also commendable is the new 5-year research plan of the National Vaccine Advisory Committee, which will entail the study of minority subpopulations, including patients with mitochondrial disorders. A strong, safe vaccination program is a cornerstone of public health.
 
Misrepresenting Hannah Poling v. HHS to the medical profession does not improve confidence in the immunization program or advance science toward an understanding of how and why regressive encephalopathy with autistic features follows vaccination in susceptible children.”
 
*        *        *
 
Autism Speaks has committed the very sin Dr. Poling mentions above by severely misrepresenting the Hannah Poling decision. I believe their blog post actively seeks to minimize its importance, falsely reassure parents to keep on vaccinating, and keep the AS fundraising machine well oiled and running. There are times when I’m hopeful Autism Speaks will do right by our kids, but times like this leave me extremely distrustful, with no hope at all that they will ever lead the way in getting us all out of this mess.
 
Addendum
 
A remarkable conversation took place online regarding the Hannah Poling decision at the about.com blog moderated by Lisa Jo Rudy. I have pulled selected comments from the blog, presented in the order they were made, for your viewing enjoyment. Although Alison Singer is no longer an Autism Speaks employee, because she was fired, she helps toe the party line that I believe Autism Speaks still partakes in regarding the Hannah Poling decision 
Alison Singer said:
 
Hannah Poling received 5 shots to protect against 9 diseases on a single day. She developed fever following that series of vaccines. Because she has an existing encephalopathy (presumably on the basis of a mitochondrial enzyme defect) and because worsening of an existing encephalopathy following measles-containing vaccine is a compensible injury, Hannah Poling was compensated.
 
Lisa Jo Rudy Responded:
 
Thanks for your comment, Alison, but now I’m really confused.
You say she had an existing encephalopathy that was exacerbated by the vaccines? But wouldn’t something like that have symptoms that would have been identifiable prior to the vaccinations? Or is it the case that brain injury was asymptomatic prior to the vaccines? My understanding was that the pre-existing condition was mitochondrial disorder?
Meanwhile – if the vaccines caused Hannah’s condition to deteriorate to the point where the symptoms could reasonably be diagnosed as, say, PDD-NOS – how is this different from saying “the vaccines worsened Hannah’s condition such that she was now diagnosable with an autism spectrum disorder?”
 
Alison Singer responded:
 
My understanding is that this is fairly typical for mitochondrial enzyme defects, in that she worsened during the second year of life. This would have happened independent of whether she had received vaccines that caused fever or had ear infections that caused fever or never had fever. One could argue that the stress of fever (from whatever cause) allowed her symptoms to first manifest, but they would have manifested at some time. Samuel Berkovic has similarly shown that children with sodium channel transport defects are more likely to manifest their first seizure if they got a vaccine that caused fever. But if you look at the children who did and those who didn’t have their first seizure with vaccines, there is no difference in neurological outcome.
 
Lisa Jo Rudy added:
 
Just to clarify: I haven’t changed my point of view.
That is to say, I am still quite certain that vaccines are not the cause of an epidemic of autism. In fact, the whole idea that there IS an epidemic of autism, IMO, remains highly questionable [author’s note: Lisa Jo Rudy, meet Stone Age, Stone Age, Lisa Jo Rudy]. What’s more, I certainly do not believe that the US Government has intentionally injured our children and then covered up the evidence so as to ensure a steady income from Big Pharma.
Nevertheless, I am know that some children are, in fact, injured by vaccines (hence the existence of the Vaccine Court). In this case, the vaccine court and others seem to be working awfully hard to reassure the public that vaccines couldn’t possibly have caused damage leading to symptoms diagnosable as an ASD. And so far as I can tell from information made publicly available, Hannah Poling’s symptoms are as similar to an ASD as “coughs, sneezes and related symptoms of the upper respiratory system” are to the common cold.
By carefully wording decisions to avoid the “A word,” I really do think the vaccine court and others are asking for increased public fear, uncertainty and doubt. And that, certainly, goes against the public interest.
Lisa
 
DanK chimed in:
 
I asked Murphy and he said: Anything that can go wrong, will go wrong, only vaccines are exception. Vaccines are safe.
 
And, finally, Terry Poling dropped El Martillo on Alison Singer:
 
 “This message pertains specifically to Alison Singer. Every once in a while something is sent to me that really just burns me up.

There is NOTHING more irritating than people who pretend that they have some sort of inside information that makes what they say meaningful on a topic. You, Alison Singer, appear to be one of those people…at least when it comes to my daughter, Hannah Poling.
While you may feel that your daughter was destined to be autistic, I would never pretend to know the first thing about why your daughter has the issues that she does. And you would do well to stop acting as though you have ANY credible knowledge about my child.
Nothing makes you look more like a puppet on a string than to spill out the garbage about Hannah having an encephalopathy PRIOR to the July 19, 2000 vaccines. The ONLY person ever saying that has been PAUL OFFIT, your employer. And, this is only his wishful thinking. Paul needs to use his MD to practice medicine. I think he forgot and thinks it stands for marketing director.”
 

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