NAA and the Wrights

Yesterday the National Autism Association openly challenged Bob and Suzanne Wright to account for their statement about Katie.

Today NAA sent out a notice of their conference in the fall.

Suzanne Wright is listed as one of the speakers.

I am guessing that things are not as chilly between Bob and Suzanne and the environmental/biomed camp as they seem to be on the surface.

There is not a chance that Suzanne would walk into a room full of NAA members and extol the virtues of genetic research over environmental. What would be the point?

Either way, my hat is off to the woman. She is going to be pelted with questions about what is going on at Autism Speaks. I really respect her for coming.

I will be at this conference if only to hear from Suzanne Wright.

NAA and SafeMinds to AS: "Hey... What the Hell"!?

NAA and SafeMinds want Autism Speaks to explain themselves and their decision to distance themselves from Katie and her comments. I would love to hear the answer to that as well.

Statement from the National Autism Association (NAA) and SafeMinds regarding board member Katie Wright, her recent interview with David Kirby and subsequent statement from Autism Speaks

The National Autism Association (NAA) and SafeMinds compliment Katie Wright for her thoughtful commentary in a recent video interview. We were surprised by a subsequent announcement by Autism Speaks about Katie, whose son Christian was the driving force behind the creation of Autism Speaks by her parents, Bob and Suzanne Wright. The announcement stated that Katie should not be considered a spokesperson for Autism Speaks and her views do not represent those of her parents or their organization.

In her interview with Evidence of Harm author David Kirby, Katie speaks from her heart with regard to her son's diagnosis of autism, the struggles and hardships she and her family have endured as a result and what she feels should be the direction of autism research. In the interview, Katie makes clear she is expressing her views as a parent and not as a representative of Autism Speaks. It is odd that an organization would issue a statement counteracting something that doesn’t exist. A more serious concern is that Katie's substantive points on autism research and causation, which are shared by so many families, are apparently being opposed by an organization that has stated its commitment to pursuing all reasonable avenues of science.

NAA and SafeMinds offer our support of Katie, both as a parent and as a board member of our respective organizations. When Katie spoke to David, she represented the thoughts of thousands of parents who believe they delivered their healthy infants to a doctor’s office for government mandated vaccines only to witness their lapse into sickness and regression into autism.

Parents bring a wealth of expertise to science and treatment discussions because they are the ones confronted on a daily basis with the needs of their children and as such, their opinions should be actively solicited and embraced. Parents like Katie add perspective and urgency. They play an essential role in directing precious resources towards the most promising ways that will most quickly improve the lives of those suffering with autism now and prevent its occurrence in the future.

In keeping with these principles, our organizations ask Autism Speaks to clarify the rationale for issuing their announcement on Katie. We ask them to assure the community that meaningful autism research on the role of the environment, including vaccines and their components, will assume dramatically greater and expedited prominence in its scientific and treatment agendas.

To view the interview between David Kirby and Katie Wright go to www.autismmedia.org

To view the recent statement from Autism Speaks regarding this interview see http://www.autismspeaks.org/wrights_statement.php
For information regarding the National Autism Association or SafeMinds go to www.nationalautismassociation.org or www.safeminds.org

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.

UPDATE:

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."

What Really Happened When Katie Mentioned Vaccines On Oprah

JB Handley of Generation Resuce is a friend of Katie Wright-Hildebrand and posted an account of her experience on the Oprah Show this week. She said a good deal more about the autism-vaccine connection that was edited out. Here are JB's very frank comments:

REMINDER: There has been a little confusion in the comments section. The following is not my account or opinion... it is JB Handley's.

Katie was told by the producers before the show was filmed that if
she mentioned vaccines she would be off the show.

While taping, the pediatrician made the misstatement about vaccines
and autism (that whole "no connection" reassuring bullshit), and,
during break, Katie appealed directly to Oprah to let her respond,
as you saw on the show.

However, Oprah's response to Katie about "opening the can of worms"
and the audience's applause after what she said was actually based
on a much longer exchange, all of which was edited out of the final
cut of the show.

After the part you heard Katie say, Katie went on to say that the
preservatives in the vaccines made her son sick and that the
combination vaccines and the vaccine schedule were grossly unsafe.

Everyone's favorite pediatrician then jumped in and said that if the
schedule were changed there would epidemics. Katie responded by
saying there already is an epidemic and that our kids are not
disposable so the CDC can perpetuate irrational fears of the measles
and the flu.

I think this highlights a number of things:

- The censorship most media outlets give to this issue is very high.
My personal opinion is that this is due entirely to the power of
pharma advertising and to the fact that the media outlets hear
directly from pharma in advance of these shows and get warned. The
fact that the daughter of NBC's FORMER CEO must be deeply troubling
for pharma because this is going to be one very tough person to shut
up.

- Oprah over-ruled the directive Katie was given because she is
Oprah and appears to have strong moral fiber. If Don Imus is a 10, I
give Oprah a 5, which makes her second-best for national
personalities dealing honestly about our kids, although it is almost
incomprehensible to me that this is Oprah's first show on autism.

- The lame doctor saying "if the schedule were changed there would
be epidemics" has no idea what she is talking about. It is
unbelivable that it is NEVER reported that in the mid-1980s there
were 10 vaccines on the schedule and today its 36. We were not
having massive epidemics in the 1980s and the schedule has more than
tripled due to money and recklessness, with no monitoring system
that could ever catch a delayed-onset condition like autism.

- Katie is a true warrior for her son and all of our kids. She said
so much more than America got to hear.

JB

Katie Wright Joins the NAA Board

HUGE news. Daughter of GE Chairman Bob Wright, mother to Christian, the child who's autism diagnosis lead to Autism Speaks, joins the boards of both the National Autism Association and Safe Minds

Today on the Oprah show Katie will state publicly that she believes that vaccines caused her son's autism.

Katie Wright-Hildebrand and Becky Grant-Widen
Join NAA's Board of Directors

The National Autism Association is pleased to announce the appointment of two new members to its Board of Directors, Katie Wright-Hildebrand and Becky Grant-Widen.

Katie is the mother of two boys, Mathias, age 3 and 5 year-old Christian. Christian regressed into autism at 2 ½ years old. Katie completed her under-graduate studies at Boston University and received a Masters in Education from Columbia University. Studying counseling psychology, she received her professional license in 2000 and was the Clinical Director of the Sexual Assault Crisis Center in Stamford, CT providing free and confidential counseling services to male and female survivors of rape and sexual assaults. Katie resigned her position when Christian became ill and now, with her husband Andreas, is dedicated to working to improve the lives of children and families affected by Autism. Watch for Katie on Thursday's episode of The Oprah Winfrey Show!

Becky comes to NAA with 13 years experience in public health non-profits, with a history in tobacco control and community health program development. She currently works as a public health consultant, focused on grantwriting for local and national autism organizations. As the parent of two boys, one of whom is on the autism spectrum, Becky is committed to using her experience to benefit children with autism. In her home state of Maine, Becky has organized local autism events, testified before the state legislature to eliminate the use of mercury in vaccines, and helps guide parents just starting out on the autism journey.

Everyone with NAA looks forward to working with these talented and dedicated parents as we carry out our mission of providing support and hope to all families affected by autism.

Together, anything’s possible.

UPDATE!:

Katie also joined the board of Safe Minds! DAMN!

SafeMinds is pleased to announce the appointment of Katie Wright-Hildebrand to the board of directors.

Katie is the mother of two boys, Mathias, age 3 and 5 year-old Christian. Christian regressed into autism at 2 ½ years old. Katie completed her under-graduate studies at Boston University and received a Masters degree in Education at Columbia University. She studied counseling psychology and received her professional license in 2000. She worked as the Clinical Director of the Sexual Assault Crisis Center in Stamford, CT providing free and confidential counseling services to male and female survivors of rape and sexual assaults. Katie resigned her position when Christian became ill and now, with her husband Andreas, is dedicated to working to improve the lives of children and families affected by autism.