NYTIMES: Autism Debate Strains a Family and Its Charity

Note from Ilena Rosenthal of the Humantics Foundation: How
distressing to see this family also torn apart.

http://www.BreastImplantAwareness.or...WatchWatch.htm

http://www.nytimes.com/2007/06/18/us...pagewanted=all

Katie Wright and her son Christian, who is autistic, appear in the
documentary film “Autism Every Day,” financed by the charity Autism
Speaks.


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.

Autism Speaks Web SiteThe 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.

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.

The boy did not respond to behavioral therapies, the Wrights said,
leading to their daughter’s desperate search for anything that might
help. “When you have that sense of hopelessness, and don’t see
results, you do things that other people think is too risky,” Mr.
Wright said. “The doctors say, ‘Wait for the science.’ But you don’t
have time to wait for the science.”

The Wrights agreed to disagree with most of Katie’s views. But her
public attack on other parents crossed a line, Mr. and Mrs. Wright
said in separate telephone interviews.

“I know my daughter feels deeply that not enough is being done,” Mr.
Wright said. “The larger issue is we want to be helpful to everyone,
and to do that we need information, data, facts.”

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.

“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.”

Ilena Rose wrote:
Note from Ilena Rosenthal of the Humantics Foundation: How
distressing to see this family also torn apart.

Agreed. It is even more distressing that there are those like JB Handley
of Generation Rescue, who is also a cybersquatter like I mentioned to
you, is using them to spread his bile.

http://www.kevinleitch.co.uk/wp/?p=564

Ilena Rose wrote:
Note from Ilena Rosenthal of the Humantics Foundation: How
distressing to see this family also torn apart.

Yes it. Unfortunately, there are those who spread the lies of mercury
causing autism. The lies result in this family being torn apart and
millions of dollars being wasted on useless research.

Sad, very sad.


jeff

http://www.BreastImplantAwareness.or...atch.htm#JPUTZ

Jeffrey P Utz ... who was never awarded a NON RESTRICTED medical
license, and who has a long history of lying to the public that he is
a pediatrician claims to have expertise in this ongoing scientific
debate.

It is extremely probable that there is a subset of human beings ...
particularly infants, who can and do react violently to mercury being
pumped into their tiny bodies, causing long lasting and pervasive
damage.

I have watched the autism debate on many various forums on the
internet ... and the quackwatch connected flacks are the most virulent
and twisted ... Utz being put one. David "Orac DOES NOT Know" Gorski
is another ... he hides behind various fake names on different
internet forums.

Utz was also one to spread the total and utter propaganda about breast
implants, showing both his ignorance and stupidity in one swell foop
falsely announcing that "there is no evidence that silicon (sp)
implants have ever harmed anyone." When he wrote that piece of
disinformation, over a quarter of a million women had already written
the FDA with their silicone implant related injuries and illnesses.





Yes it. Unfortunately, there are those who spread the lies of mercury
causing autism. The lies result in this family being torn apart and
millions of dollars being wasted on useless research.

Sad, very sad.

Jeff

http://www.huffingtonpost.com/robert...s_b_52894.html
Robert F. Kennedy Jr.
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Attack on Mothers

64 Comments | Posted June 19, 2007 | 06:51 PM (EST)
Read Mo Breaking Living Now News, Robert F. Kennedy

Attack on Mothers del.icio.us: Attack on Mothers

The poisonous public attacks on Katie Wright this week--for revealing
that her autistic son Christian (grandson of NBC Chair Bob Wright),
has recovered significant function after chelation treatments to
remove mercury -- surprised many observers unfamiliar with the
acrimonious debate over the mercury-based vaccine preservative
Thimerosal. But the patronizing attacks on the mothers of autistic
children who have organized to oppose this brain-killing poison is one
of the most persistent tactics employed by those defending Thimerosal
against the barrage of scientific evidence linking it to the epidemic
of pediatric neurological disorders, including autism. Mothers of
autistics are routinely dismissed as irrational, hysterical, or as a
newspaper editor told me last week, "desperate to find the reason for
their children's illnesses," and therefore, overwrought and
disconnected.

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But my experience with these women is inconsistent with those
patronizing assessments. Over the past two years I've met or
communicated with several hundred of these women. Instead of a
desperate mob of irrational hysterics, I've found the anti-Thimerosal
activists for the most part to be calm, grounded and extraordinarily
patient. As a group, they are highly educated. Many of them are
doctors, nurses, schoolteachers, pharmacists, psychologists, Ph.D.s
and other professionals. Many of them approached the link skeptically
and only through dispassionate and diligent investigation became
convinced that Thimerosal-laced vaccines destroyed their children's
brains. As a group they have sat through hundreds of meetings and
scientific conferences, and studied research papers and medical tests.
They have networked with each other at meetings and on the Web. Along
the way they have stoically endured the abuse routinely heaped upon
them by the vaccine industry and public health authorities and casual
dismissal by reporters and editors too lazy to do their jobs.

Many of these women tell a story virtually identical to Katie Wright's
-- I have now heard or seen this grim chronology recounted hundreds of
times in conversations, e-mails and letters from mothers: At 2-1/2
years old, Christian Wright exceeded all milestones. He had 1,000
words, was toilet-trained, and enjoyed excellent social relations with
his brother and others. Then his pediatrician gave him
Thimerosal-laced vaccines. He cried all night, developed a fever and,
over the coming months, this smart, healthy child disappeared.
Christian lost the ability to speak, to interact with family members,
to make eye contact or to point a finger. He is no longer toilet
trained. He engaged in stereotypical behavior--screaming,
head-banging, biting and uncontrolled aggression, and suffers
continuously the agonizing pain of gastrointestinal inflammation.

After hearing that story a couple dozen times, a rational person might
do some more investigation. That's when one encounters the
overwhelming science -- hundreds of research studies from dozens of
countries showing the undeniable connection between mercury and
Thimerosal and a wide range of neurological illnesses. In response to
the overwhelming science, CDC and the pharmaceutical industry ginned
up four European studies designed to disguise the link between autism
and Thimerosal. Their purpose was to provide plausible deniability for
the consequences of their awful decision to allow brain-killing
mercury to be injected into our youngest children. Those deliberately
deceptive and fatally flawed studies were authored by vaccine industry
consultants and paid for by Thimerosal producers and published largely
in compromised journals that neglected to disclose the myriad
conflicts of their authors in violation of standard peer-review
ethics. As I've shown elsewhere [see www.robertfkennedyjr.com], these
studies were borderline fraud, using statistical deceptions to mislead
the public and regulatory community.

The CDC and IOM base their defense of Thimerosal on these flimsy
studies, their own formidable reputations, and their faith that
journalists won't take the time to critically read the science. The
bureaucrats are simultaneously using their influence, energies and
clout to derail, defund and suppress any scientific study that may
verify the link between Thimerosal and brain disorders. (These would
include epidemiological studies comparing the records of vaccinated
children with those of unvaccinated populations like the Amish or
home-schooled kids who appear to enjoy dramatically reduced levels of
autism and other neurological disorders.) The federal agencies have
refused to release the massive public health information accumulated
in their Vaccine Safety Database (VSD) apparently to keep independent
scientists from reviewing evidence that could prove the link. They are
also muzzling or blackballing scientists who want to conduct such
studies.

Ironically, it is the same voices that once blamed autism on "bad
parenting," and "uninvolved" moms that are now faulting these mothers
for being too involved.

Due to this campaign of obfuscation and public deception,
Thimerosal-based vaccines continue to sicken millions of children
around the world and potential treatments -- like the chelation that
benefited Christian Wright -- are kept out of the hands of the
mainstream doctors now treating autistic kids with less effective
tools. Like thousands of other mothers of autistic children, Katie
Wright knows what sickened her child. Her efforts to spare other
families this catastrophe, deployed with a cool head and calm
demeanor, are truly heroic. Maybe it's time we all started listening.
Maybe it's time to start respecting and honoring the maternal
instincts and hard work of Katie and her fellow mothers by
aggressively funding the studies that might verify or dispute them.

On Jun 20, 8:38 am, Ilena Rose wrote:
http://www.BreastImplantAwareness.or...atch.htm#JPUTZ

Jeffrey P Utz ... who was never awarded a NON RESTRICTED medical
license, and who has a long history of lying to the public that he is
a pediatrician claims to have expertise in this ongoing scientific
debate.

It is extremely probable that there is a subset of human beings ...
particularly infants, who can and do react violently to mercury being
pumped into their tiny bodies, causing long lasting and pervasive
damage.

I have watched the autism debate on many various forums on the
internet ... and the quackwatch connected flacks are the most virulent
and twisted ... Utz being put one. David "Orac DOES NOT Know" Gorski
is another ... he hides behind various fake names on different
internet forums.

Utz was also one to spread the total and utter propaganda about breast
implants, showing both his ignorance and stupidity in one swell foop
falsely announcing that "there is no evidence that silicon (sp)
implants have ever harmed anyone." When he wrote that piece of
disinformation, over a quarter of a million women had already written
the FDA with their silicone implant related injuries and illnesses.



Yes it. Unfortunately, there are those who spread the lies of mercury
causing autism. The lies result in this family being torn apart and
millions of dollars being wasted on useless research.
Sad, very sad.
Jeff- Hide quoted text -

- Show quoted text -
----------------------------------------------------
The distinction noted here (and my ****y point) is that Jeff was
speaking of 'issues' and Ilena Rosenthal jumped in with her usual
'bash the poster'.

With her wide, wide, wide range of interests (dabbler of all, master
of none)... (breast implants, alternative medicine, cancer, woman
abuse, free speech, real estate, hawking time shares, etc, etc, etc)
one doesn't have to wonder why she fails to address specifics of
'issues'. Her comment: "I have watched the autism debate on many
various forums on the internet.." is an example of her knowledge and
expertise.

Ah....but as they say 'opinions are like assholes, everyone has one'.

Coleah
FREEDOM! Home of the Free, because of the Brave!

www.BreastImplantAwareness.org/coleah.htm
www.BreastImplantAwareness.org/coleah-lies.htm
http://ilena-rosenthal.blogspot.htm


http://www.BreastImplantAwareness.or...atch.htm#JPUTZ

Jeffrey P Utz ... who was never awarded a NON RESTRICTED medical
license, and who has a long history of lying to the public that he is
a pediatrician claims to have expertise in this ongoing scientific
debate.

It is extremely probable that there is a subset of human beings ...
particularly infants, who can and do react violently to mercury being
pumped into their tiny bodies, causing long lasting and pervasive
damage.

I have watched the autism debate on many various forums on the
internet ... and the quackwatch connected flacks are the most virulent
and twisted ... Utz being put one. David "Orac DOES NOT Know" Gorski
is another ... he hides behind various fake names on different
internet forums.

Utz was also one to spread the total and utter propaganda about breast
implants, showing both his ignorance and stupidity in one swell foop
falsely announcing that "there is no evidence that silicon (sp)
implants have ever harmed anyone." When he wrote that piece of
disinformation, over a quarter of a million women had already written
the FDA with their silicone implant related injuries and illnesses.





Yes it. Unfortunately, there are those who spread the lies of mercury
causing autism. The lies result in this family being torn apart and
millions of dollars being wasted on useless research.

Sad, very sad.

Jeff

www.BreastImplantAwareness.org/coleah.htm makes this absurd and quacky
comment:

I think the 'fighting' over hows and whys, looking to place blame, is a waste of time.

I know scores of families with children injured after their "safe"
vaccinations who indeed want to find out why ... only bought off
shills and idiots like Stephen Barrett, JPUtz, David "Orac Knows
Nothing" Gorski, and quackbooster Coleah Penley Ayers want to stop
the scientific research.

On Jun 20, 7:54 am, Ilena Rose wrote:
www.BreastImplantAwareness.org/coleah.htmmakes this absurd and quacky
comment:

I think the 'fighting' over hows and whys, looking to place blame, is a waste of time.

I know scores of families with children injured after their "safe"
vaccinations who indeed want to find out why ... only bought off
shills and idiots like Stephen Barrett, JPUtz, David "Orac Knows
Nothing" Gorski, and quackbooster Coleah Penley Ayers want to stop
the scientific research.


The problem with Ilena Rosenthal, is her blatant misrepresentation of
facts, while she is so totally incapable of intelligently debating an
issue. For example: never has Coleah advocated, or stated that she
wanted to stop scientific research.

I also think that autism can come from a variety of sources. I
suspect Mercury may be a culprit, I also think genes "may" have
something to do with it. Something that hasn't been mentioned is that
if Mercury (in the environment or in vaccinations), has affected a
parent, than it isn't a stretch to believe that it could cause damage
to the offspring.

I certainly think more research would be beneficial.

But I also agree with Coleah's stance, that the 'fighting' over hows
and whys, looking to place blame, is
a waste of time. And am so glad her grandson is doing so well.

We have a similar situation on our family. The child required extra
attention in school, received it, and has grown into one of our more
creative, and excelling family members.

I find it odd, that Ilena Rosenthal, would be so eager to pummel the
FDA for not doing an adequate job of regulating, but yet is so quick
to SHILL for the alternative medicine field, which has little study,
little proof, little scrutiny, and absolutely NO OVERSIGHT!

I think the 'fighting' over hows and whys, looking to place blame, is a waste of time.

www.BreastImplantAwareness.org/coleah.htm parrots the Vac Machine ...
here is what a parent has to say to you True Believers who buy and
spread the propaganda campaign partly based at Quack Inc. Coleah
doubles online as the head of the "I Hate Ilena Rosenthal & You Should
Too" Campaign and a promoter of the amoral Invasion of Iraq.


http://www.BreastimplantAwareness.or...WatchWatch.htm


She recieved her MMR vaccine in early Dec 1995. "In a heartbreaking
home video shot in mid-February 1996 that was projected in the
courtroom, Michelle is seen sitting in a toy caboose, flapping her
arms. She ignores the entreaties of her mother and grandfather. A year
later, she was diagnosed with autism".
Now this doesn't prove much, except for the fact that you don't spend
much time reading before your opinions slip from between your teeth.
Perhaps she could have been diagnosed at 16 months old, before the
shots, but it would have been very difficult.
The other illnesses this young girl suffers from may or may not have
anything to do with vaccines and mercury. But, I say, as an American
taxpayer, and I will write it slowly, so you may fully comprehend its
full implications...
I would rather my tax money be spent on finding out once and for all
if there is a connection between these vaccines and this illness, than
one more dollar spent on KBR's $100 dollar a bag laundry service in
Iraq.She recieved her MMR vaccine in early Dec 1995. "In a
heartbreaking home video shot in mid-February 1996 that was projected
in the courtroom, Michelle is seen sitting in a toy caboose, flapping
her arms. She ignores the entreaties of her mother and grandfather. A
year later, she was diagnosed with autism".
Now this doesn't prove much, except for the fact that you don't spend
much time reading before your opinions slip from between your teeth.
Perhaps she could have been diagnosed at 16 months old, before the
shots, but it would have been very difficult.
The other illnesses this young girl suffers from may or may not have
anything to do with vaccines and mercury. But, I say, as an American
taxpayer, and I will write it slowly, so you may fully comprehend its
full implications...
I would rather my tax money be spent on finding out once and for all
if there is a connection between these vaccines and this illness, than
one more dollar spent on KBR's $100 dollar a bag laundry service in
Iraq.