June 18, 2007

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?


[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.


[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 That said, conflict of interest accusation withdrawn.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

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.
Skip to next paragraph
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.”


Anonymous said...

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.

dookie dad said...

Why do the Bob and Suszanne Wright accept Christian being helped by biomed but not others?

Wade Rankin said...

I'm not sure if I'm one of "the bloggers," although it's certainly a cooler name for a band than "The Mercurys" (can I play in the band???). In any event, I'm pretty selective about who speaks for me. Autism Speaks does not, but Ginger does.

Ginger said...

Thank you Wade.

It is a high honor.

Anonymous said...

dookie dad--Bob and Suzanne accept this for Christian but no others because all of us are just peons to them I am sure. They all come across as elite snobs.

What a dysfunctional bunch. Why would Suzanne be telling the newspapers that Katie and Bob are not speaking to each other? They seem to be nothing but a bunch of media seeking obnoxious people. Whoever thinks this group speaks for them should have their head examined!

Anonymous said...

Where is Katie's husband in all of this? Is he allowed to have a public opinion or do the Wright's control that too? You would think this kid belongs to Bob and Suzanne more than to Katie and the husband.