Monday, June 04, 2007




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

"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 orreflect 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." END.

Draw your own conclusions. Discuss. Play nicely.

The Wrights founded Autism Speaks because Katie's son has regressive autism. And now the doting Grandma who appears on TV with the teary, hound dog eyes appears to be saying "Hey, she has nothing to do with our multi-million dollar fund raising machine." I've met Suzanne. Her passion and concern is genuine. The tears are real. That's why I just don't understand this public statment. I'll be happy to hear from and blog about info from anyone who knows otherwise.

Suffice it to say, Autism Speaks has alienated many (all?) sectors of the actual autism world faster than a 30 second spot on NBC. I'm not talking about researchers who whack the AS pinata for funding dollars or pharmaceutical executives or politicians. I'm talking about those of us who live with autism 24/7, regardless of position on treatment, acceptance or any of the other variables associated with the diagnosis. People like Katie Wright Hildebrand. And Kim Stagliano.

It's almost impossible for me to believe that Autism Speaks has made so many missteps among the very community they were founded to help. Saddest of all, it appears to be money and politically motivated.


Anonymous said...

Autism Speaks does not speak for me. Or my child.

irene said...

I'm speechless. Ditto anonymous.

Anonymous said...

Autism Speaks spoke volumes with this heartless, careless statement. Remarks like this leave us all speechless.

Anonymous said...

Why are people shocked at Autism Speaks and this statement? I can't believe any of you thought they were sincere and are suprised to see the obvious, that their obligation is to money and publicity. Why have people wasted their time admiring and supporting this organization?

Another Autism Mom said...

Well, I guess David Kirby and JB Handley were the ones who started to publicly pin Katie against her parents (David through the HuffPo story, and JB through an e-mail that was forwarded to the whole autism community). And if Katie is complaining in public about Autism Speaks' priorities in research, her parents had the right to respond. SHE took the first step against her parents, now she should be grownup enough to face the consequences.

Kim Stagliano said...

Mom, I think it's unlikely that a writer and a man across the country, however well meaning, could convince an intelligent woman to seek medical care that she didn't really want for her child. In fact, Mrs. Wright found the doc Katie is using. Mrs. Wright used to speak with David Kirby as a team. JB and DK have been supportive of Katie, as have countless others, but they are NOT Svengali's. This is more likely about the NAAR board and money - that if the general public caught wind that the founders' daughter had moved in another direction, the fundraising flow could be affected. I'd guess Alison Singer had more control over the Wrights than DK and JB have over Katie. As you well know, we autism Mom's are pretty opinionated and stubborn and I include you in that statement as a compliment. Could you ever imagine your parents publicly hanging you out to dry on a national forum? OK, maybe if you were Lindsay Lohan you can. But Katie's forum with DK was quite small by comparison, really just within a sector of the autism community. The Wrights blew this up into the debacle it is by posting that letter.

Anonymous said...

Does anyone know if Alison Singer supports NAAR and their ideas or is she also pushing for more environmental research?

Laura said...

I hope Katie's relationship with her parents isn't affected by this Cover Your Ass maneuvering on their part for Autism Speaks. It seems to me like her parents are probably thinking, "We can't say this openly because of our involvement with NAAR and my position with NBC" but I bet they are still very supportive of Katie and her efforts to help Christian, and believe vaccines played a big part, not that it's all genetic. At least that's what the optimist in me thinks! I've always maintained a somewhat skeptical viewpoint of AS, though. Just because something has "autism" in its name, doesn't mean it supports what I think my child with autism needs. It seems like the bigger the umbrella group with more corporate sponsorships, the more people who get left out in the rain!

Another Autism Mom said...

Kim, of course Katie is an adult and Kirby and Handley are not solely responsible for pulling her away from Autism Speaks influence. But they WERE the first ones to announce that family disagreement in public... which stroke me as odd, because they seemed to be pleased with the situation. David Kirby, again, interviewed Katie and publish her criticism of Autism Speaks' priorities. So, why are the parents now the villains of the story? They are responsible executives of an organization, and Katie's statements basically force them to come out with their clarification, disassociating AS's views with their daughter's, because many people could assume they were one and the same. It is very sad, I fell bad for both sides of the family, but we can't deny that Katie played a role on the whole debacle.

Amanda said...

I have never heard of Autism Speaks but why are we all getting our knickers in a twist? By definition there will never be a one size fits all solution to the difficulties faced by those on the autistic SPECTRUM. The clue is in the title! No wait, hold the front page! Katie fell out with her parents! And we care because?? Strikes me there's a lot of people screaming my way or no way on your side of the ocean, Kimbo, even if they don't actually appear to know what they're talking about.

Anonymous said...

David Kirby's Take on Katie Wright, Autism Speaks, and the
Vaccine/Autism Debate

Yesterday, I wrote about a political ruckus that started with a video
interview conducted by David Kirby, author of the controversial book
Evidence of Harm. The interviewee was Katie Wright, mom of five year
old Christian, who is diagnosed with autism. In the interview, Katie
attributed her son's autism to vaccine damage - specifically to
thimerosal, a mercury-based ingredient which was included in most
vaccines until very recently. She also suggested that perhaps it was
time for research and fundraising to focus more on toxins and
vaccines, and less on genetics.

While Katie's perspective isn't all that unusual, her status is. She's
the daughter of Bob and Suzanna Wright, founders of the
mega-foundation Autism Speaks. Autism Speaks supports research into
causes of autism, but takes no stand on vaccines per se. And Autism
Speaks has also merged fairly recently with the National Association
for Autism Research (NAAR) and Cure Autism Now (CAN), both of which
have focused most of their money and resources on genetic research.
The result of her public statement has been a good deal of political
commentary, as well as a statement by Autism Speaks disassociating
itself from Katie's perspective.

David Kirby is neither a doctor nor an autism parent, but as an
investigative reporter his voice has become significant in the "what
causes autism" debate. So what's his perspective on Katie Wright and
the issue of vaccines and autism? To find out, I called and asked.
Here's his take on Katie Wright's point of view, and the outcome of
the recent video 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!

So, if Kirby literally wrote the book on vaccines and autism - and has
developed a significant reputation for being a spokesman on the topic
- what's his recommendation to parents concerned about vaccines and
autism? I was delighted to hear his suggestions, which point the way
to safe vaccines for healthier children:

You ultimately make the decisions about your child. Immunization
is extremely important and you have to take it very seriously. But if
you're concerned about the number and concentration of the current
schedule, there are pediatricians that will work with you to be sure
your child is fully immunized, but spreading things out a bit more.
Some parents feel better vaccinating their child that way. If the goal
is to get kids vaccinated, let's work with parents rather than the one
size fits all which may not be best for every single child. I think a
little flexiblity in the vaccine program would go a long way toward
easing parents' concerns, helping parents feel they have more control
over the health care of their children. We still have individual
rights in this country! That's not anti-vaccine: that's trying to
increase vaccine rates.

Anonymous said...

What these parents have done to their daughter is hugely disappointing-- and on so many levels.

The Wright's have repeatedly stated that their daughter and their grandson were the reasons they founded the organization. To publicly state that their "daughter's personal views differ from ours and do not represent or reflect the ongoing mission of Autism Speaks" seems a bit strange then....

Autism Speaks' mission states that it "...aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle."

If they don't listen to or take into account the views of their daughter, and the THOUSANDS of families who share similar views, how will Autism Speaks EVER be able to "find the missing pieces???"

Anonymous said...

Their daughter's views do not bring in money. Period. Their daughter's view threaten the autism research machine created by NAAR many years ago. Hey NAAR, what have you got to show for all your spending that will help my autistic 14 year old son today? Anything? I'm waiting. What's that? His brain may be bigger than a typical kid? His eyes might track different than a typical kid? Terrific. Can you tell me how to get him to sleep through the night? How about his stimming? Can you help him stop that? What? Oh yeah, I know you already told me about his brain size. No, his dad wasn't older when we had him. His Dad was 23. No he didn't watch a lot of TV. What do you have for me NAAR? Besides millions from your donors? Millions the Wrights did not want to lose. And yet I lose. And my son loses. And no one cares.

Matty said...

Wow, I check in after a few weeks and you have some real good group dynamic conflict going on. Based on what I have read here, and elsewhere, and what one of your anonymous posters synopsised from David Kirby, it does seem that Autism Speaks has lost touch with their mission statement. In the business world this is usually the beginning of the end. I am more convinced then ever that autism is a mutli faceted issue that has not one, but many, potential underlying things causing its happening.

If Autism Speaks means what it says in it's mission statement you would think that instead of lambasting the daughter of the founders and posturing to protect their 'image', they would get together and truly work to help those with autism. Regardless of where some elements of the group may think autism could come from.

Again, situations like these usually lead to the beginning of the end. Sad because the only ones that will suffer are the autistic and those that care for them.