Vaccines, Autism and Our Daughter, Hannah
Jon Poling and Terry Poling
The New York Times
April 5, 2008
Re: “Inoculated Against Facts,” by Paul A. Offit (Op-Ed, March 31):
Our daughter, Hannah, developed normally until receiving nine vaccines at once. She immediately developed a fever and encephalopathy, deteriorating into what was diagnosed, based on the Diagnostic and Statistical Manual of Mental Disorders, or D.S.M. IV, as autism.
The federal government, not an “unusual court,” made the concession. The decision wasn’t “careless,” as your subheading called it. It was based on a thorough review of Hannah’s records by Health and Human Services doctors.
The National Vaccine Injury Compensation Program does rely on a “preponderance of evidence” standard, which Hannah’s case met. It doesn’t necessarily compensate families “quickly, generously and fairly.” We filed our claim six years ago, pain and suffering are capped at $250,000, and Hannah has yet to receive compensation.
Dr. Offit’s assertion that “even five vaccines at once would not place an unusually high burden on a child’s immune system” is theory and risky practice for a toddler’s developing brain. No one knows if Hannah’s mitochondrial dysfunction existed before receiving vaccines. Dr. Offit’s claim that Hannah had “already weakened cells” is unfounded.
We support a safe vaccination program against critical infectious diseases. We need straight facts, serious science and speedy answers on these important issues.
Jon Poling
Terry Poling
Athens, Ga., April 3, 2008
Showing posts with label NYT. Show all posts
Showing posts with label NYT. Show all posts
April 5, 2008
Polings Prove, Once Again, That Paul Offit Does Not Have A Clue
I am at the DAN! conference and this morning one speaker said, "Thank God for the Hannah Poling case". She was met with a big round of applause from the audience.
March 11, 2008
The New York Times Wakes Up!
Wow!
The NYT, the most hostile publication to the vaccine/autism connection out there, that has denigrated parents like me for years, has just called for the VCIP cases to be unsealed!
The times they are a-changin!
David Kirby's comments:
The NYT, the most hostile publication to the vaccine/autism connection out there, that has denigrated parents like me for years, has just called for the VCIP cases to be unsealed!
The times they are a-changin!
A Puzzling Autism Case
Editorial
Published: March 11, 2008
The federal government’s concession that vaccines may have triggered brain deterioration with symptoms like autism in a young girl is sure to exacerbate concerns among parents worried about immunizations. It is imperative that the court for vaccine compensation unseal documents involved in this unusual case so that experts, families and their doctors can better understand exactly how Hannah Poling, now 9 years old, came to be harmed after receiving a battery of shots when she was a toddler.
For years medical authorities have been assuring us that sound epidemiological studies showed that vaccines and a mercury preservative once widely used in them were not implicated in causing autism, a condition characterized by lack of social skills, problems with communication and repetitive behaviors. That almost certainly remains true for the vast majority of youngsters.
Hannah’s case was complicated by a rare disorder that can deprive the brain of needed energy and cause neurological deterioration. When Hannah’s case was submitted to a federal vaccine compensation program, the government settled before the evidence was argued in a hearing. Government medical personnel apparently found that the vaccinations aggravated the underlying disorder. An alternative theory — that the vaccines may have caused the disorder — is viewed skeptically by government experts.
Top health officials are still urging parents to get their children vaccinated, and with good reason. All children deserve protection against infectious diseases, and even youngsters with these rare disorders may be at risk of neurological deterioration if they contract one of the diseases that vaccines protect them against.
It will be important to develop the best possible medical guidance for youngsters with rare defects. That effort would be enhanced if the government makes public all relevant documents in this puzzling case.
David Kirby's comments:
Stay tuned, this just got a LOT more interesting
I have been talking to lots of people over there, former colleagues and the like, for weeks
I am not taking credit for this! The Times moves at its own pace. But obviously, someone over there is paying attention
Let’s hope the FEDS release all the Poling documents – I know there will be pressure coming from Congress to do so as well
AND there is other activity going on behind the scenes right now on Capital Hill that will really shake things up, when it breaks.
Last year, an IOM panel warned senior staff at the CDC to get legal counsel. Boy, are they going to need it.
I think this long story is about to begin its final act.
DK
July 9, 2007
Autism United: NY Special Ed Chief Denies Autism Increase
Autism United Challenges NY State Special Ed Chief's Denial of Autism Increase
Autism United, a new organization of parents and service organizations, today (7/8/07) submitted a letter to the NY State official in charge of special education policy challenging her statement that "diagnostic shift" explains the increase in the number of children with autism. The NY official's statement, quoted in a July 8, 2007 NY Times article reporting about supposed declining rates of children in special education, is the latest troubling statement by a public official denying the reality of the autism epidemic. Denial of an autism epidemic would justify a public policy denying the expenditure of public funds on the education of children with autism....
Read the whole thing.
June 25, 2007
The Rescue Post: AS and NYT... again
Last week a new autism blog was launched by the folks at Generation Rescue. The Rescue Post will be authored by several writers in the autism community and I will be contributing in time as well.
Today Kim Stagliano points out another New York Times/Autism Speaks convergence.
Today Kim Stagliano points out another New York Times/Autism Speaks convergence.
June 18, 2007
Why Are They Afraid to Look?
Why Are They Afraid to Look?
By Anne McElroy Dachel
amdachel@msn.com
Last week in Washington, DC, parents got a chance to present their side alleging that vaccines caused their child's autism. This is the most heated medical controversy in the nation and it has no signs of going away.
Part of the reason the debate is guaranteed to continue is because of what officials can't tell about us about autism. The Centers for Disease Control and Prevention has downplayed autism at every opportunity. It is infuriating to parents who have no reasonable explanation for why their child has autism and who are going broke paying for therapy and treatment to continually hear about what the CDC doesn't know. They don't know the cause or the cure for the disorder. They don't even know if there are more kids with autism, despite counting affected children for the last ten years. Federal officials are convinced of only one thing: Vaccines don't cause autism.
The CDC has their studies as proof of their claim, but these are rife with charges of manipulated data and conflicts of interest that reduce them to the "cigarette science" used to disprove that smoking caused lung cancer half a century ago. An official Institute of Medicine Report in 2004 settled nothing and the battle continues now in federal claims court in Washington, DC.
According to the media, the parents have no case and if they win, it won't be because they had any real proof of their claim, just that they managed to sway the minds of the three masters on the panel with their story of personal tragedy. For the public watching the coverage, it's unprecedented. The parents presented their case last week, but almost all the major news stories already had the verdict announced.
On Monday June 11th, NBC News had Pete Williams confusing the MMR vaccine with thimerosal-containing vaccines, yet adamant that "repeated studies have found no evidence linking autism to the vaccines."
Gardiner Harris at the New York Times that day also told us, "Every major study and scientific organization examining this issue has found no link between vaccination and autism but the parents and their advocates have persisted. " His story was picked up by other big city papers.
Newsday conclusively stated, "Large scientific studies have found no association between autism and vaccines containing thimerosal."
Tuesday, June 12th, ABC News earned the week's prize for saying that science doesn't support a link in more ways and with more experts than any other news source:
Dr. Susan Fisher-Hoch, professor at the University of Texas School of Public Health in Brownsville:
"Awarding a claim would fly in the face of reason and science."
Dr. Robert Schooley, professor of medicine and head of infectious diseases at the University of California at San Diego: If parents win it "would only further increase the cost of vaccines and lead to worsening of the public health."
Dr. Peter Hotez, president of the Sabin Vaccine Institute in Washington D.C.:
"Focusing on vaccines is really misplaced energy."
Dr. David Witt, assistant clinical professor of medicine at the University of California at San Francisco:
"My personal opinion is that if there is a victory, it is a sad comment on how energy can be diverted from real health issues and causes, to faddish beliefs and diverted angst toward a handy target,"
Dr. Pascal James Imperato, chairman of preventive medicine and community health at State University of New York Downstate Medical Center:
"The scientific evidence to date does not support their claim."
If names of prominent institutions and well-credentialed experts could have settled the issue, that ABC News story would have done it. There didn't seem to be any scientist or doctor worth quoting on the parents' side, or maybe ABC News is so convinced about who's right that they didn't bother to look.
One has to wonder how the claims of 4,800 parents ever made it to federal court when it seems there is nothing to support their side.
As the week wore on, the coverage droned on. A Washington Post story on June 16th reported , "To date, no major studies have shown any connection between vaccines and autism, and the Institute of Medicine has rejected any causal relationship."
The Albuquerque Tribune reported, "Every major study and scientific organization examining this issue has found no link between vaccination and autism,"
The San Francisco Chronicle ran the story, The Truth About Autism in which we were told by Dr. Rahul K. Parikh that "large, well-conducted studies have shown no link between thimerosal and autism."
Sunday, June 17th, the Boston Herald published an editorial, Autism suit puts others at risk. There the unnamed writer dismissed the parents' case as absolutely without merit. "We are aware of nothing that justifies changing the conclusion of a special committee of the Institute of Medicine, part of the National Academy of Sciences, three years ago: 'The body of epidemiological evidence favors rejection of a causal relationship between the MMR vaccine and autism,' and ditto for vaccines containing the preservative in question, thimerosal. In plain English, children get autism at the same rate whether vaccinated or not, whether the vaccine contains thimerosal or not. The committee could find no evidence to support various postulated mechanisms by which autism might result from vaccination."
Monday, June 18th ABC Nightly News ran a story about how the autism controversy is affecting the Wright family. The founders of Autism Speaks and their daughter Katie epitomize how deep the divide is. ABC News of course had to note in the report that with regard to vaccines causing autism, "There is no scientific evidence that is the case. None."
Every time I hear that pronouncement I want to shout, "How can you defend injecting mercury into children when it was never tested and approved by the FDA before it was put into use?" I've asked that question of countless reporters and no one has ever answered it.
These news reports all week sounded like press releases for those with everything at stake in the fight and not objective journalism. Readers would sadly come up empty if they were to search for major stories quoting any of the expert witnesses for the parents. What's implied of course is that there were none. It seemed as if news outlets were beating themselves over the head trying to put the claim that vaccines cause autism on a par with the flat Earth theory.
It was never noted in these articles that if the parents were proved right and the explosion in the autism rate is connected to the coincidental increase in the childhood vaccine schedule, especially the increase in mercury-containing vaccines, this will go down as the worst medical mistake in history. The implications are enormous.
On June 15th, CBS News reporter Sharyl Attkisson posted an online article, Autism: Why The Debate Rages. She outlined the suspicions, the obfuscation, and the denials that parents have had to deal with in this issue. This argument is never going quietly away no matter how many newspapers and TV networks find willing experts to tell the public that injecting mercury into children hasn't hurt them.
This week David Kirby, author of Evidence of Harm had a perfectly timed piece on the Huffington Post. In Tired of Autism Yet? he tells us this war will wage on until one side concedes and he proposes a logical way to settle things. This suggestion has come out before and it would seem a simple solution: Compare vaccinated and unvaccinated children of the same birth cohort who were born at the time of the greatest mercury exposure in the vaccine schedule.
Dan Olmsted has already shown us that it's possible. He found unvaccinated Amish and he found unvaccinated kids in a medical group in Chicago. He also found no autism in those groups and that may be why the Centers for Disease Control and Prevention hasn't jumped at the chance to settle this heated issue once and for all.
David Kirby says he'd welcome such a study. "If the drug companies, and the Bush Administration, and Congress, and the public health establishment, are so very confident in the total safety of all childhood vaccines (and their components, including mercury), then why would they reasonably object to such a study." This may become the rallying cry of thousands of parents: "Why are they afraid to look?"
Parents of autistic children see officials paralyzed in addressing autism. They will only continue to demand this issue be dealt with openly and fairly. There is no patience left with those who can only come up with new ways of repeating the same tired claims that have been around for years.
Autism can't continue to be referred to as a some mystery or puzzle while we pretend that one in every 150 children has always had this disorder. It's bankrupting families and school districts. I personally know the autism controversy isn't going away because there are now far too many parents who are devoting their lives to public recognition of the disaster.
By Anne McElroy Dachel
amdachel@msn.com
Last week in Washington, DC, parents got a chance to present their side alleging that vaccines caused their child's autism. This is the most heated medical controversy in the nation and it has no signs of going away.
Part of the reason the debate is guaranteed to continue is because of what officials can't tell about us about autism. The Centers for Disease Control and Prevention has downplayed autism at every opportunity. It is infuriating to parents who have no reasonable explanation for why their child has autism and who are going broke paying for therapy and treatment to continually hear about what the CDC doesn't know. They don't know the cause or the cure for the disorder. They don't even know if there are more kids with autism, despite counting affected children for the last ten years. Federal officials are convinced of only one thing: Vaccines don't cause autism.
The CDC has their studies as proof of their claim, but these are rife with charges of manipulated data and conflicts of interest that reduce them to the "cigarette science" used to disprove that smoking caused lung cancer half a century ago. An official Institute of Medicine Report in 2004 settled nothing and the battle continues now in federal claims court in Washington, DC.
According to the media, the parents have no case and if they win, it won't be because they had any real proof of their claim, just that they managed to sway the minds of the three masters on the panel with their story of personal tragedy. For the public watching the coverage, it's unprecedented. The parents presented their case last week, but almost all the major news stories already had the verdict announced.
On Monday June 11th, NBC News had Pete Williams confusing the MMR vaccine with thimerosal-containing vaccines, yet adamant that "repeated studies have found no evidence linking autism to the vaccines."
Gardiner Harris at the New York Times that day also told us, "Every major study and scientific organization examining this issue has found no link between vaccination and autism but the parents and their advocates have persisted. " His story was picked up by other big city papers.
Newsday conclusively stated, "Large scientific studies have found no association between autism and vaccines containing thimerosal."
Tuesday, June 12th, ABC News earned the week's prize for saying that science doesn't support a link in more ways and with more experts than any other news source:
Dr. Susan Fisher-Hoch, professor at the University of Texas School of Public Health in Brownsville:
"Awarding a claim would fly in the face of reason and science."
Dr. Robert Schooley, professor of medicine and head of infectious diseases at the University of California at San Diego: If parents win it "would only further increase the cost of vaccines and lead to worsening of the public health."
Dr. Peter Hotez, president of the Sabin Vaccine Institute in Washington D.C.:
"Focusing on vaccines is really misplaced energy."
Dr. David Witt, assistant clinical professor of medicine at the University of California at San Francisco:
"My personal opinion is that if there is a victory, it is a sad comment on how energy can be diverted from real health issues and causes, to faddish beliefs and diverted angst toward a handy target,"
Dr. Pascal James Imperato, chairman of preventive medicine and community health at State University of New York Downstate Medical Center:
"The scientific evidence to date does not support their claim."
If names of prominent institutions and well-credentialed experts could have settled the issue, that ABC News story would have done it. There didn't seem to be any scientist or doctor worth quoting on the parents' side, or maybe ABC News is so convinced about who's right that they didn't bother to look.
One has to wonder how the claims of 4,800 parents ever made it to federal court when it seems there is nothing to support their side.
As the week wore on, the coverage droned on. A Washington Post story on June 16th reported , "To date, no major studies have shown any connection between vaccines and autism, and the Institute of Medicine has rejected any causal relationship."
The Albuquerque Tribune reported, "Every major study and scientific organization examining this issue has found no link between vaccination and autism,"
The San Francisco Chronicle ran the story, The Truth About Autism in which we were told by Dr. Rahul K. Parikh that "large, well-conducted studies have shown no link between thimerosal and autism."
Sunday, June 17th, the Boston Herald published an editorial, Autism suit puts others at risk. There the unnamed writer dismissed the parents' case as absolutely without merit. "We are aware of nothing that justifies changing the conclusion of a special committee of the Institute of Medicine, part of the National Academy of Sciences, three years ago: 'The body of epidemiological evidence favors rejection of a causal relationship between the MMR vaccine and autism,' and ditto for vaccines containing the preservative in question, thimerosal. In plain English, children get autism at the same rate whether vaccinated or not, whether the vaccine contains thimerosal or not. The committee could find no evidence to support various postulated mechanisms by which autism might result from vaccination."
Monday, June 18th ABC Nightly News ran a story about how the autism controversy is affecting the Wright family. The founders of Autism Speaks and their daughter Katie epitomize how deep the divide is. ABC News of course had to note in the report that with regard to vaccines causing autism, "There is no scientific evidence that is the case. None."
Every time I hear that pronouncement I want to shout, "How can you defend injecting mercury into children when it was never tested and approved by the FDA before it was put into use?" I've asked that question of countless reporters and no one has ever answered it.
These news reports all week sounded like press releases for those with everything at stake in the fight and not objective journalism. Readers would sadly come up empty if they were to search for major stories quoting any of the expert witnesses for the parents. What's implied of course is that there were none. It seemed as if news outlets were beating themselves over the head trying to put the claim that vaccines cause autism on a par with the flat Earth theory.
It was never noted in these articles that if the parents were proved right and the explosion in the autism rate is connected to the coincidental increase in the childhood vaccine schedule, especially the increase in mercury-containing vaccines, this will go down as the worst medical mistake in history. The implications are enormous.
On June 15th, CBS News reporter Sharyl Attkisson posted an online article, Autism: Why The Debate Rages. She outlined the suspicions, the obfuscation, and the denials that parents have had to deal with in this issue. This argument is never going quietly away no matter how many newspapers and TV networks find willing experts to tell the public that injecting mercury into children hasn't hurt them.
This week David Kirby, author of Evidence of Harm had a perfectly timed piece on the Huffington Post. In Tired of Autism Yet? he tells us this war will wage on until one side concedes and he proposes a logical way to settle things. This suggestion has come out before and it would seem a simple solution: Compare vaccinated and unvaccinated children of the same birth cohort who were born at the time of the greatest mercury exposure in the vaccine schedule.
Dan Olmsted has already shown us that it's possible. He found unvaccinated Amish and he found unvaccinated kids in a medical group in Chicago. He also found no autism in those groups and that may be why the Centers for Disease Control and Prevention hasn't jumped at the chance to settle this heated issue once and for all.
David Kirby says he'd welcome such a study. "If the drug companies, and the Bush Administration, and Congress, and the public health establishment, are so very confident in the total safety of all childhood vaccines (and their components, including mercury), then why would they reasonably object to such a study." This may become the rallying cry of thousands of parents: "Why are they afraid to look?"
Parents of autistic children see officials paralyzed in addressing autism. They will only continue to demand this issue be dealt with openly and fairly. There is no patience left with those who can only come up with new ways of repeating the same tired claims that have been around for years.
Autism can't continue to be referred to as a some mystery or puzzle while we pretend that one in every 150 children has always had this disorder. It's bankrupting families and school districts. I personally know the autism controversy isn't going away because there are now far too many parents who are devoting their lives to public recognition of the disaster.
NYT: Katie "Denigrating", Wrights "Sympathetic", Autism Speaks "World-Class"
Today in a front page article on the problems at Autism Speaks and the division in the Wright family, the New York Times lives up to its reputation among autism parents as the most biased media outlet in autism reporting today.
As usual, there is much wrong with this article. Here are the highlights.
First, the NYT reports that Autism Speaks is a “Big Tent” organization. The Wright’s may have intended AS to be a “Big Tent” organization, but it is not. Proponents of vaccine safety and biomedical intervention are not welcomed in the tent any more than Katie is, now that she questions the AS line of research. Go ask the other organizations and they will tell you their stories.
[See below, NYT did not get any $ for this ad]
Next, I will start with the day before the article came out. Sunday June 17th Autism Speaks ran a full page ad in the NYT. I called the NYT and found that it costs between $120,000 and $150,000 to run such an ad in their paper. This was done the day before publishing this article that is heavily weighted toward the Wrights and AS, and against Katie and the multiple autism organizations and bloggers that support her position, which are apparently so unimportant that they do not even merit being named, much less their specific concerns even listed.
And here we are back at the same conflict of interest question that I have been harping on all week. How do we accept network news “expert doctors” claim that vaccines are not linked to autism, when those making the claims have ties to the pharmaceutical industry that will be libel if there is a link, and when the commercial immediately following the interview is a prescription drug ad? How do we take the NYT’s word for it when Bob and Suzanne gave them six figures while the interview process was taking place?
Seriously?
[Anon. commenter reports that, "The NYT ad you are talking about is an Ad Council public service announcement and the space to publish it would have been donated by the NYT. No AS $$$ would have been used for publishing this ad."
When I called the NYT this morning they quoted me $150,000 with 20% discount for non-profits and I specified autism.
Checking...]
[Just talked to a nice lady at the Ad Council who works on the AS campaign and she reports that the NYT got no money for the ad. The space was donated. That said, conflict of interest accusation withdrawn. Sorry for the bad information.]
[Hey! I want $150,000 worth of free ad space to tell parents out there that "Autism is Treatable", a much more important message than, "Autism Exists". I am calling the Ad Council back.]
[Generation Rescue reports that they paid $125,000 for their full page NYT ad in 2005]
Ms. Gross and Ms. Strong’s article claims that:
As one of the bloggers who is questioning what AS is doing, I am none to satisfied with this “nothing to see here” dismissal of the accusations. Have the Wrights or AS made a public rebuttal of the questions we have raised somewhere, and I have just missed it? Or does the NYT just feel that we should take their word for it that a sufficient rebuttal has been made privately and be satisfied with that?
I am not satisfied with that. I want AS to answer publicly as to why they believe that Park Avenue office space, a $340,000 salary, not paying the ‘autism mom’ director of Autism Everyday for her work, and their “world-class” science board giving millions of dollars in grants to themselves rather than researching the interventions that are actually healing the child whose illness inspired the foundation in the first place (The Wright’s own grandson) does not qualify as ‘untoward’. *(see note at bottom)
I looked up ‘untoward’:
That pretty much fits the picture perfectly.
And since when is a formal assistant attorney general the one to consult on what is moral and ethical? He is the guy to tell you if something is illegal, but we have not made charges of any law being broken. This entire paragraph was a strawman argument.
Finally, the authors discuss the hurt feelings at Autism Speaks.
Autism Speaks' 'feelings were hurt' by Katie when she said that it is time for the old guard to allow the research to shift to environmental causes and treatments? Again… Seriously??
Note that the response was not, "No they don't need to shift because the genetic course is resulting in assistance to those with autism and here is how..."
Note that the response was not, "Yes it is time to shift, and here is where we are going to make changes..." The answer was "We are offended at your remarks".
I have seen this happen in several places I will label it "The Offense Gambit". [It is probably a recognized logical fallacy with an actual name. If you know what it is, let me know.] It comes in handy when you run out of counter arguments.
Taking offense at comments is what Thomas Verstraeten did when he ran out of ways to defend his terrible epidemiological study against the legitimate critique that was offered.
Here is a little secret about us autism parents. People who try to use The Offense Gambit on autism parents need to understand that it does not work on us. When you get offended, here is what we are too polite to say at the moment:
Are we to believe that it is reasonable NOT to change the direction of research because even suggesting it will hurt the feelings of wealthy and powerful board members and researchers? Seriously?
I am a family therapist, so I am about the last person who thinks that hurt feelings should be ignored; especially in a broken family. Feelings are important. But there is a time and a place for dealing with feelings. That place is not in a discussion determining where millions of dollars in research funding for a disastrous childhood epidemic will go.
The reason for all the fractiousness and contention in the autism community is because, flat out, parents of autistic kids are sick of being lied to. We have seen the truth with our own eyes and all the lipstick in the world is not going to pretty up that “no vaccine link, no cure, must be genetics” pig enough for us to kiss it the way AS, the CDC and the NYT want us to.
Are you sick of the autism arguments? All of them? Are you ready for healing?
Then see part 2 of this piece coming up on The Rescue Post.
PS. And who the hell are "The Mercurys"? Sounds like a band. Am I one of "The Mercurys"? Is this an NYT invention, because I have never heard it before? Neither had Dan Olmsted when it was brought up to him on C-SPAN today.
*NOTE* Last week Dr. Kreigsman testified at the hearings about something good and constructive that AS did for our kids in regards to advancing the medical communities understanding of our kids GI problems and establishing a consensus on how they should be treated. This is huge and wonderful. This is a great example of the kind of good that AS could do if they wanted to. I am all for giving credit where credit is due and will be writing a full piece on this.
As usual, there is much wrong with this article. Here are the highlights.
First, the NYT reports that Autism Speaks is a “Big Tent” organization. The Wright’s may have intended AS to be a “Big Tent” organization, but it is not. Proponents of vaccine safety and biomedical intervention are not welcomed in the tent any more than Katie is, now that she questions the AS line of research. Go ask the other organizations and they will tell you their stories.
[See below, NYT did not get any $ for this ad]
Next, I will start with the day before the article came out. Sunday June 17th Autism Speaks ran a full page ad in the NYT. I called the NYT and found that it costs between $120,000 and $150,000 to run such an ad in their paper. This was done the day before publishing this article that is heavily weighted toward the Wrights and AS, and against Katie and the multiple autism organizations and bloggers that support her position, which are apparently so unimportant that they do not even merit being named, much less their specific concerns even listed.
And here we are back at the same conflict of interest question that I have been harping on all week. How do we accept network news “expert doctors” claim that vaccines are not linked to autism, when those making the claims have ties to the pharmaceutical industry that will be libel if there is a link, and when the commercial immediately following the interview is a prescription drug ad? How do we take the NYT’s word for it when Bob and Suzanne gave them six figures while the interview process was taking place?
Seriously?
[Anon. commenter reports that, "The NYT ad you are talking about is an Ad Council public service announcement and the space to publish it would have been donated by the NYT. No AS $$$ would have been used for publishing this ad."
When I called the NYT this morning they quoted me $150,000 with 20% discount for non-profits and I specified autism.
Checking...]
[Just talked to a nice lady at the Ad Council who works on the AS campaign and she reports that the NYT got no money for the ad. The space was donated. That said, conflict of interest accusation withdrawn. Sorry for the bad information.]
[Hey! I want $150,000 worth of free ad space to tell parents out there that "Autism is Treatable", a much more important message than, "Autism Exists". I am calling the Ad Council back.]
[Generation Rescue reports that they paid $125,000 for their full page NYT ad in 2005]
Ms. Gross and Ms. Strong’s article claims that:
"The Wright family’s fight has captured the attention of the bloggers, who are now questioning everything from its office lease to how it makes grants. The charity rebutted the bloggers’ accusations of improprieties in interviews with The New York Times, which examined its IRS forms and read relevant sections to Gerald A. Rosenberg, former head of the New York State attorney general’s charities bureau. He said nothing he reviewed was untoward.”
As one of the bloggers who is questioning what AS is doing, I am none to satisfied with this “nothing to see here” dismissal of the accusations. Have the Wrights or AS made a public rebuttal of the questions we have raised somewhere, and I have just missed it? Or does the NYT just feel that we should take their word for it that a sufficient rebuttal has been made privately and be satisfied with that?
I am not satisfied with that. I want AS to answer publicly as to why they believe that Park Avenue office space, a $340,000 salary, not paying the ‘autism mom’ director of Autism Everyday for her work, and their “world-class” science board giving millions of dollars in grants to themselves rather than researching the interventions that are actually healing the child whose illness inspired the foundation in the first place (The Wright’s own grandson) does not qualify as ‘untoward’. *(see note at bottom)
I looked up ‘untoward’:
un•to•ward (ŭn-tôrd', -tōrd') adj.
1. Not favorable; unpropitious.
2. Troublesome; adverse: an untoward incident.
3. Hard to guide or control; unruly.
4. Improper; unseemly.
5. Archaic. Awkward.
That pretty much fits the picture perfectly.
And since when is a formal assistant attorney general the one to consult on what is moral and ethical? He is the guy to tell you if something is illegal, but we have not made charges of any law being broken. This entire paragraph was a strawman argument.
Finally, the authors discuss the hurt feelings at Autism Speaks.
Autism Speaks' 'feelings were hurt' by Katie when she said that it is time for the old guard to allow the research to shift to environmental causes and treatments? Again… Seriously??
Note that the response was not, "No they don't need to shift because the genetic course is resulting in assistance to those with autism and here is how..."
Note that the response was not, "Yes it is time to shift, and here is where we are going to make changes..." The answer was "We are offended at your remarks".
I have seen this happen in several places I will label it "The Offense Gambit". [It is probably a recognized logical fallacy with an actual name. If you know what it is, let me know.] It comes in handy when you run out of counter arguments.
Taking offense at comments is what Thomas Verstraeten did when he ran out of ways to defend his terrible epidemiological study against the legitimate critique that was offered.
Here is a little secret about us autism parents. People who try to use The Offense Gambit on autism parents need to understand that it does not work on us. When you get offended, here is what we are too polite to say at the moment:
We don’t care. Either you are guilty of the accusation, in which case we want you to own up to it and fix it so we can get back to helping out kids; or you are not guilty and we will happy accept a legitimate defense of the claim and apologize for our error and get back to helping out kids. Pick one or the other but don't waste our time being offended. We are in the fight of our lives.
Are we to believe that it is reasonable NOT to change the direction of research because even suggesting it will hurt the feelings of wealthy and powerful board members and researchers? Seriously?
I am a family therapist, so I am about the last person who thinks that hurt feelings should be ignored; especially in a broken family. Feelings are important. But there is a time and a place for dealing with feelings. That place is not in a discussion determining where millions of dollars in research funding for a disastrous childhood epidemic will go.
The reason for all the fractiousness and contention in the autism community is because, flat out, parents of autistic kids are sick of being lied to. We have seen the truth with our own eyes and all the lipstick in the world is not going to pretty up that “no vaccine link, no cure, must be genetics” pig enough for us to kiss it the way AS, the CDC and the NYT want us to.
Are you sick of the autism arguments? All of them? Are you ready for healing?
Then see part 2 of this piece coming up on The Rescue Post.
PS. And who the hell are "The Mercurys"? Sounds like a band. Am I one of "The Mercurys"? Is this an NYT invention, because I have never heard it before? Neither had Dan Olmsted when it was brought up to him on C-SPAN today.
*NOTE* Last week Dr. Kreigsman testified at the hearings about something good and constructive that AS did for our kids in regards to advancing the medical communities understanding of our kids GI problems and establishing a consensus on how they should be treated. This is huge and wonderful. This is a great example of the kind of good that AS could do if they wanted to. I am all for giving credit where credit is due and will be writing a full piece on this.
Autism Debate Strains a Family and Its Charity
The New York Times
By JANE GROSS and STEPHANIE STROM
Published: June 18, 2007
A year after their grandson Christian received a diagnosis of autism in 2004, Bob Wright, then chairman of NBC/Universal, and his wife, Suzanne, founded Autism Speaks, a mega-charity dedicated to curing the dreaded neurological disorder that affects one of every 150 children in America today.
The Wrights’ venture was also an effort to end the internecine warfare in the world of autism — where some are convinced that the disorder is genetic and best treated with intensive therapy, and others blame preservatives in vaccinations and swear by supplements and diet to cleanse the body of heavy metals.
With its high-powered board, world-class scientific advisers and celebrity fund-raisers like Jerry Seinfeld and Paul Simon, the charity was a powerful voice, especially in Washington. It also made strides toward its goal of unity by merging with three existing autism organizations and raising millions of dollars for research into all potential causes and treatments. The Wrights call it the “big tent” approach.
But now the fissures in the autism community have made their way into the Wright family, where father and daughter are not speaking after a public battle over themes familiar to thousands of families with autistic children.
The Wrights’ daughter, Katie, the mother of Christian, says her parents have not given enough support to the people who believe, as she does, that the environment — specifically a synthetic mercury preservative in vaccines — is to blame. No major scientific studies have linked pediatric vaccination and autism, but many parents and their advocates persist, and a federal “vaccine court” is now reviewing nearly 4,000 such claims.
The Wright feud has played out in cyberspace and spilled into Autism Speaks, where those who disagree with Katie Wright’s views worry that she is setting its agenda. And the family intent on healing a fractured community has instead opened its old wounds and is itself riven.
The rift began in April when Katie put herself squarely on the side of “The Mercurys,” as that faction is known, on Oprah Winfrey, where she described how her talkative toddler turned unresponsive and out-of-control after his vaccines and only improved with unconventional, and untested, remedies.
In a Web interview with David Kirby, author of the controversial book, “Evidence of Harm: Mercury in Vaccines and the Autism Epidemic,” Ms. Wright lashed out at the “old guard” scientists and pioneering autism families. If the old-timers are unable to let go of “failed strategies,” she said, they should “step aside” and let a new generation “have a chance to do something different with this money” that her parents’ charity was dispensing. [link to the interview at FAIR Autism Media]
Complaints poured in from those who said Ms. Wright’s remarks were denigrating.
So, in early June, Bob and Suzanne Wright repudiated their daughter on the charity’s Web site. “Katie Wright is not a spokesperson” for the organization, the Wrights said in a brusque statement. Her “personal views differ from ours.” The Wrights also apologized to “valued volunteers” who had been disparaged. Told by friends how cold the rebuke sounded, Mrs. Wright belatedly added a line saying, “Katie is our daughter, and we love her very much.”
Ms. Wright called the statement a “character assassination.” She said she had not spoken to her father since. Ms. Wright continues to spend time with her mother, but said they had not discussed the situation.
“I totally respect if her feelings were hurt,” Mrs. Wright said. “But a lot of feelings were hurt. A lot.”
Now other autism families who hoped to put their differences aside are shouting at each other in cyberspace. “Our struggle is not and should not be against each other,” said Ilene Lainer, the mother of an autistic child and the executive director of the New York Center for Autism.
The big tent approach of Autism Speaks appealed to Mel Karmazin, chief executive of Sirius Radio and an early board member and contributor. “If you look at what projects Autism Speaks has funded, we are agnostic,” he said.
Mr. Karmazin, who also has an autistic grandson, added, “I never wanted to look my grandson in the eye and tell him I’m taking just one viewpoint or that I think it had to be genetic.”
Bob and Suzanne Wright are sympathetic to Katie’s plight, having witnessed Christian’s sudden regression and his many physical ailments, mostly gastrointestinal, which afflict many autistic children.
Some in the traditional scientific community worry that Autism Speaks has let Ms. Wright’s experience shape its agenda. She scoffs at the notion. Her parents, she said in a telephone interview, are “courageous” and “trying very hard,” but have been slow to explore alternative approaches.
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Related
On Autism's Cause, It's Parents vs. Research (June 25, 2005)
Times Topics: Autism
Web Link
Autism Speaks Web Site
“You can say it and say it and say it,” she said. “Show me evidence that they’re actively researching vaccines.”
The Wright family’s fight has captured the attention of the bloggers, who are now questioning everything from its office lease to how it makes grants. The charity rebutted the bloggers’ accusations of improprieties in interviews with The New York Times, which examined its IRS forms and read relevant sections to Gerald A. Rosenberg, former head of the New York State attorney general’s charities bureau. He said nothing he reviewed was untoward.
The most distinctive aspect of Autism Speaks is its alliance with Autism Coalition for Research and Education, an advocacy group; the National Alliance for Autism Research, devoted to scientific research into potential genetic causes, with high standards for peer review; and Cure Autism Now, which has championed unconventional theories and therapies.
Which wing of the merged charity is ascendant? Some establishment scientists and parents now fear it is The Mercurys. They point to Cure Autism Now’s having more seats than the National Alliance does on the board of directors and the growing number of research projects that focus on environmental causes.
At a recent benefit gala, featuring Bill Cosby and Toni Braxton, some in the audience were surprised when Mr. Wright announced that all proceeds would go toward environmental research, which generally includes vaccines.
But a list of current research grants on the Autism Speaks Web site suggests that the Wrights, while walking a fine line, are leaning toward genetic theories.
From 2005 to 2007, the charity sponsored $11.5 million in grants for genetic research (compared with $5.9 million by all its partners between 1997 and 2004). It sponsored $4.4 million in environmental research (down from $6 million granted by the partners in the previous seven years). And many of the environmental studies explore what is known as the double-hit hypothesis: That the genes for autism may be activated in some children by exposure to mercury or other neuro-toxins.
Bob and Suzanne Wright say their two-year immersion into the world of autism has been an eye-opener, especially the heated arguments worthy of the Hatfields and McCoys.
Mrs. Wright is aware that the marriage of the Alliance and Cure Autism Now, for instance, could fall apart over opposing ideologies. “I’m not going to let it,” she said. “The truth will rise to the top.”
She is also aware that the rift in her own family needs repair: On Friday, her daughter posted a message on an autism Web site questioning their “personal denouncement of me.”
Yet Mrs. Wright is confident that “we’ll work our way through this.” Autism, she said “has done enough damage to my family. I’m not letting it do any more.”
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