So last week they hurt their own daughter, this week they are hurting another autism family.
I don't believe that Autism Speaks are the bad guys. I believe that they are the confused guys.
The world of autism is absolutely no place for the cut throat business tactics of corporate America. We are all struggling on a daily basis and our families tip over easily, so you just don't screw with each other.
I feel for the Wright family right now, I really do. They come from a place of privilege, where only the strong survive, and they really don't understand the struggle that most families are living under. I really believe that they want to serve kids and families, and that they think they are serving them. But you can't screw one or two families for the greater good of "Autism Speaks". You just can't. It shows that your priorities are not in order.
This is a crucial time for them. Things are coming to a head for Bob and Suzanne. They are either going to soften and become teachable, learn from the families that they started AS to serve, and really begin putting their millions to work to actually serve them...
...they are going to become hard to the message that they need to hear, that autism is preventable and treatable, and join their NAAR friends in their descent into irrelevance as people wise up to the party line as more and more kids recover.
I sincerely hope it is the former. I hope so for their sakes, for Katie and Christian's sakes, and for Chandler's sake.
Their struggle to stay blind to the truth that children are regressing into Autism after vaccination and improving under the DAN protocol hurts my son. The longer they hold out, the longer it will take to get Chandler's treatment covered by insurance. The longer it will take for pediatricians to get the message that this treatment is out there and that it works. The longer it will take for the availability of treatment to go up and the costs to come down.
If the corporate model worked for curing Autism, NAAR and CAN would have cured it already. They raised millions every year and did not get one inch closer to a cure. They have not produced one medical intervention for my son.
Almost all of the interventions that are recovering and even curing autistic kids have come out of The Autism Research Institute, which for a long time worked out of Bernie's house and then a storefront strip mall. They didn't give a crap about what anyone thought of them, they certainly have not poured millions into web sites and office space like AS has, they just spent what little money they had on finding direct interventions to help children now. And it worked!!
Imagine what ARI could do with AS's NYC office space budget.
Here is the Wright's new problem. They are jacking the director of "Autism Every Day", who is the mother of an autistic child:
Celebrity Autism Group in Civil War
By Roger Friedman
Autism Speaks, the celebrity group founded by former NBC chairman Bob Wright and his wife Suzanne, is in the middle of a family feud and a dispute over whether they have swiped an award-winning film from its director.
The charity is unusual because in a short time it has raised millions of dollars and called upon such celebrity friends of the Wrights like Jerry Seinfeld and Paul Simon.
The Wrights created Autism Speaks just three years ago when their grandson, Christian, was diagnosed with the malady. But since then they have had such a severe falling out with their daughter Katie, Christian's mother, that the Internet is now buzzing with a new scandal.
This week, the Wrights posted a press release on the Autism Speaks Web site in effect disowning daughter Katie's comments in a video interview she gave to a critic of Autism Speaks. Katie Wright also appeared on the "Oprah" show in April, where she talked about the split in philosophies with her parents.
Even the press release issued by the Wrights itself caused a buzz because it initially read: "Katie Wright is not a spokesperson for Autism Speaks. Our daughter's personal views differ from ours and do not represent or reflect the ongoing mission of Autism Speaks. ... Her appearance with David Kirby was done without the knowledge or consent of Autism Speaks." Ouch!
Only later, when the statement seemed too harsh, the Wrights changed the release, adding of Katie: "She is our daughter and we love her very much."
But the damage was done.
With the scandal quickly overtaking the cure of autism as a subject, comes a new dilemma. Filmmaker Lauren Thierry is accusing the Wrights of appropriating her award-winning film "Autism Every Day" for their own purposes. Thierry made the film, which was shown at Sundance this year and is in this month's Nantucket Film Festival, after the Wrights saw an earlier, shorter version they liked.
Thierry says Suzanne Wright then commissioned a feature version, and told her "money is no object." While the Wrights paid all the film's costs, they never came to terms with Thierry, the director says. They systematically cut her out of the promotion of the film, she says, when the Wrights took it on the media rounds.
This was odd considering Thierry and husband Jim Watkins, an anchorman for Channel 11 in New York, have a good PR hook of their own: They are parents of an autistic son.
Thierry wants to be paid for making "Autism Every Day," but when the Wrights sent her a contract, with a blank space for the fee, it also included a proviso that Thierry could not do any publicity for it. Thierry countered by sending a bill for $104,000 including $64,000 for labor and $40,000 for intellectual property. For that amount she was willing to allow the Wrights buy her out. Ironically, Thierry had already told the Wrights she would be splitting her fee with an autism school in New York.
The Wrights countered, through their executive, Alison Singer, that Thierry was paid $30,000 and that they have compensated her in full. But Singer can't produce any evidence of this.
"Alison Singer sent me a check for $30,000. I never cashed it and sent it back. There was never an agreement for a fee," Thierry said.
Singer, who at first told me about paying Thierry, is now playing her cards close to the vest.
"Autism Speaks feels it inappropriate to publicly disclose its details," Singer said.
The chaos surrounding Autism Speaks is not surprising. In short order the new group has shut down or subsumed a number of other, older organizations that used to do the same work, but without the resources of the Wrights. Sources at the long standing Nordoff-Robbins Foundation, for example, have complained recently that their fundraising sources have dried up since Autism Speaks came on the scene.
In her video interview, Katie Wright criticizes not only Autism Speaks but also a group they took over, the National Alliance for Autism Research, for which has organized marches and vigils for 20 years. Katie Wright now believes that vaccinations and the environment may be responsible for autism — a controversial theory among others who say it is a genetic disorder.
Whichever side turns out to be correct, the split in the Wright family cannot be good for the cause of autism.
"The whole reason for Autism Speaks was because of Christian," one critic said. "And now the Wrights are dissing his mother, their own daughter."
Singer says none of that is true.
"The Wrights started Autism Speaks for all families, not just their own," she said.
She agreed, however, that the couple would not have known about autism at all had their own family not become involved in it.
Meanwhile, Thierry says she remains unpaid and that, despite the Wrights' assertions, she is paying her own expenses. When she goes to the Nantucket Film Festival later this month, it's the festival that's picking up her travel and accommodation expenses.
Lisa Jo at About.com comments.
I don't think Autism Speaks is working in the interest of families with autistic children or in the interest of preventing future autism at all. They are allied with the genomic research industry, the NIMH, and the CDC and are not interested in doing a thing to slow the number of cases. Autism has many causes and is an umbrella term for many different disorders. One of the disorders now called autism is childhood schizophrenia and that disorder has been proven to be caused, in many non-familial cases by an older father(32+) who has acquired de novo genetic mutations in his sperm stem cells and sperm. As I said there are many, many different causes of autism. Vaccinations are very detrimental to babies who are severely autistic because of the abnormal autoimmume response they have. Please forgive me for being didactic.
Post a Comment