June 2, 2007

Katie Wright Speaks for Me!

Note: Anyone wanting to send supportive emails to Katie Wright can do so through the National Autism Association at naa@nationalautism.org

Last week at Autism One I had the good fortune to be present for Katie Wright’s official coming out. FAIR Autism Media debuted the 30 minute version of their two hour piece in which David Kirby interviews Katie Wright, which she gets to tell the full story that she was not able to tell on Oprah (more on the Oprah interview to come).

It was followed by a Q&A in which Katie expressed her affection and respect for her parents for all they were trying to accomplish in ending autism, and vehement frustration with Autism Speaks scientific board. Displaying all the passion that us mom’s are usually able to work up when talking about the state of research and the head in the sand position that the medical community is in, Katie said that it is time for the AS board (who has vastly more control over the direction of research than Bob Wright) to “stop awarding research grants to their friends” and put the money into environmental and biomedical research. I am sure you can imagine the ovation that she garnered from the audience.

During that session, and in a previous one, she stated very empathetically that she understood the position of those on the board who came to AS from NAAR. That they had been working toward the genetic causes of Autism for decades and were very invested in that line of inquiry. She also praised them, saying that they were out there looking for a cause long ago when no one else was. But, she said, that “now that their children have grown, it is time for them to step aside” and allow the research to shift.

Katie also spoke several times about her father. She was asked frank questions about him and she answered them frankly. To the question as to whether or not Mr. Wright would be hesitant to look into the vaccine question because of all the ad money that pharma spends at NBC, she plainly said that it would not be the case. With her hand over her heart, she repeatedly described her father as a man of very high integrity who would not be influenced by such matters. She further said that if anyone tried to bring pressure to bear on him in that respect, “that would be a big mistake for them, it would backfire.” She spoke with conviction and I believed her.

Katie told us that her father has seen Christian’s progress and is open and interested in the biomed approach. She also said that his hands are somewhat tied as he has contractual obligations to the people at NAAR to continue their lines of research, and that the people on the board who are not open to the environmental lines will be in place for another four years.

If it were Bob Wright’s intention to ‘turn the ship’ of AS, in my estimation it will take 5 or 10 years. With the pace of biomed research moving forward at the pace it is, they may miss the party, or arrive just in time to validate the research that DAN, NAA, SafeMinds and their sister organizations are pioneering.

Have I mentioned that finding the gene that causes autism won’t cure autism, just get people who have it aborted, just like those with Downs? Just wanted to remind you.

The Wrights have issued a statement distancing themselves from their daughter:

Statement from Bob and Suzanne Wright, Co-founders of Autism Speaks

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.

Autism Speaks is committed to finding the causes of and a cure for autism. We are proud of our scientifically based research programs, including those established by NAAR and CAN, and will continue to pursue them. The members of our scientific advisory teams have impeccable credentials and we fully support them. There is no question that genetics plays the leading role in autism and that environmental triggers are key issues for many children. These areas, as well as biomedical treatments, need huge research support.

Autism Speaks merged with NAAR because it believes in and supports its scientific mission, methods, and advisory board. We are proud of the accomplishments of NAAR and grateful to the families and volunteers who created it. They are a tremendously valued part of Autism Speaks. We welcome input from volunteers and parents/guardians of children with autism of all ages, including adults with autism. We apologize to our valued volunteers who were led to believe otherwise by our daughter's statement.

Not kind to Katie. I am sure it was to smooth ruffled feathers on the board of AS. However, The Wrights need to understand that the tide has turned. Just like their grandson, our children regressed following vaccination and get better under the DAN protocol.

It is time for Autism Speaks, to Listen.

So I will be respectfully writing to the Wright’s this week to let them know that their daughter speaks for me. I encourage you to join me and write to them, copying your letter to the scientific board. Put in the subject line: “Katie Wright Speaks For Me” and tell them your story, and what specific causes and interventions are relevant in your case and what you want them to research.

Autism Speaks
2 Park Avenue
11th Floor
New York, NY 10016

Bob Wright - Co-founder
Suzanne Wright - Co-founder
Gary W. Goldstein, M.D. - Chair, Scientific Affairs Committee
Mark Roithmayr - President
Peter H. Bell - Executive V.P. - Programs and Services

Let’s let Autism Speaks live up to their commitment to listen to all parents.

Thank You Katie. Again.

UPDATE: The Wright's statement on the AS web site has been since it was first posted:

Old statement:
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.

New statement:
Katie Wright is not a spokesperson for Autism Speaks. She is our
daughter and we love her very much. Many of Katie'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.


David Kirby comments on the rift caused by the interview:

Katie is an amazing person, and her parents are great people. They're a great family, a terrible thing happened to them [Christian's severe autism], and they're dealing with it as best as possible under a glaring spotlight. My intention is not to create any kind of rift - but I had to ask her some tough questions about the foundation that was created in her child's name. She went out of her way to defend Autism Speaks and her parents. [But she did make the comment] that the older generation of parents who helped create NAAR (the National Association for Autism Research) and focused on genetics should perhaps step aside and let younger parents try something new.

She praised them for starting NAAR - and I don't think she intended anything malicious - but umbrage was taken by parents, volunteers, and donors from NAAR who didn't appreciate Katie's comment. But it was heartfelt and sincere. I feel terrible personally that this came back in a negative way - that a rift was created in the family. People ask if I'm going to blog about this and I say no, I think I've cause enough trouble for this week - kids should not be estranged from their parents or grandparents!

Does that last line mean that Katie is estranged from her parents over this?

UPDATE: Sara at FAIR Autism Media reports that, "Katie didn't betray her parents. Her parents saw the video before it's release and even asked for a few edits... Katie views her parents in the highest regard and would never intentionally try to hurt them or what they are trying to accomplish in the autism community. Listening to Katie's comments, the Wrights sound like a very close family and I'm certain they're working things out."

No comments: