Thursday, December 11, 2008

Why did you "walk away" from Autism Speaks, Kim?Snake_puzzle_2

Katie Wright is the Daughter of AS Founders Bob and Suzanne Wright. She wrote this for www.ageofautism.com.

By Katie Wright

I did not want to write this piece or share this information. I was hoping the leadership at Autism Speaks would take care of this problem. For far too long Dr. Andy Shih and Ms. Alison Singer have representing only their own rigid belief systems in their roles at AS, doing whatever necessary to thwart environmental and vaccine research. In the meantime so many opportunities have been squandered and our children are paying the price.

I will not editorialize here; just give the reader the facts. Families and especially AS supporters have a right to know how their children’s interests are being represented.

1) Dr.Andy Shih, VP of Scientific Affairs, is an avowed disbeliever of vaccines as a possible trigger for autism, appeared on “Montel” a few years ago. Shih vehemently argued that vaccines are totally safe, can not and do not trigger autism and that excessive quantities of mercury are perfectly safe to inject into babies and children.

Two years ago AS leadership was excited about a Norwegian study on vaccinated children and autism and promised the study designers full support. AS expressed a desire to take the lead as a funder and facilitator of the project. Shih surreptitiously killed almost all involvement.

2) Shih’s recent comments to the media include, “this issue (vaccines and autism) has really been put to bed!” regarding a tiny Columbia study on autism, regression and GI disease on a dozen children. The study only actually included 5 children who had regressive autism and GI disease and one, indeed, had the measles virus in his gut. The CDC funded this study.

I encourage all to Google Andy Shih + vaccines and read the plethora of Shih quotes about why he believes there is no merit to studying over-vaccination as trigger for autism. Shih is most frequently quoted by pharmaceutical sites and vaccine manufacturers as “proof” of vaccines’ “disproved” relationship to autism.

3) Alison Singer is in control of all media relations for AS and sits on the very important and influential IACC, as AS’ representative. Singer has also overseen AS’ multi-million dollar website. Until recently, the website was devoid off all biomedical news and information.

Singer and Shih maintain a strong professional friendship with Paul Offit, lunching with him on AS’ dime.

4) Singer called CBS “Evening News” to complain about Sharyl Attkisson’s investigative news story on Dr. Paul Offit’s financial interests in the childhood immunization program. Singer copied Dr. Lou Cooper, her AAP ally, in this complaint letter. The CBS news piece uncovered the fact that Offit had recently sold his rota vaccine patent for $104 million dollars. This discovery was, in fact, huge news to all in the autism community.

5) The IACC group had the unique opportunity to effect powerful and innovative change in autism research at the NIH. The CAA was made possible by the hundreds of thousands of parents who supported its passage. Autism Speaks promised to do everything possible to support the promotion of environmental research, including vaccine research.

After nearly a year of work the NIH’s strategic plan is currently being boycotted by the entire community. Tom Insel has done a terrible job of the including stakeholders’ opinions and priorities, yet there was a critical juncture when the plan could have been saved. Lyn Redwood and all participating parent orgs (with the exception of miniscule org. ASA) voted for the inclusion of a number of environmental research initiatives which would have SAVED this endeavor. Alison Singer, as AS’ representative, voted against the plan.

OK- those are the facts, everything is true, now for the editorial.

The fact that Ms. Singer voted against the rest of the autism community is disgraceful. Clearly Ms. Singer cannot separate her personal beliefs from the mandate of the organization she is paid to serve. The IACC plan was an opportunity of monumental proportions and now a year’s work has been squandered, thanks to her veto.

Rather then embracing the big tent concept and building bridges with the grass roots parent run autism organizations, Shih and Singer have focused their energies on building relationships with Dr. Offit (a vaccine patent holder), Ami Pisani and her pharmaceutical organization and old school geneticists. This approach is not getting us where we need to go and gravely disappoints the families who trusted AS to be better than this. It was families, not pharmaceutical reps, who brought the tremendous pressure to bear in order to pass the CAA. Now our families’ interests have been betrayed by the rigid ideological beliefs of one person who would rather see the CAA fail than encompass vaccine research.

Instead of building alliances with family based orgs like the National Autism Association, Ms. Singer’s efforts have been focused on aiding Dr. Paul Offit. Autism Speaks’ PR needed to allow Dr. Offit to take care of himself, he has certainly got the financial resources to do so. Autism Speaks should have been championing the trend of greater financial transparency in autism and vaccine science. Instead, Ms. Singer was so upset by the criticism of Dr. Offit that she called CBS news to complain about the piece. This bizarre behavior is another complete betrayal of our families’ interests and serves to further illustrate the deeply ingrained beliefs and prejudices that do a deep disservice to our families.

I do not have the time to detail the myriad of instances in which Autism Speaks PR and Rubenstein associates, worked over-time to kill or diminish stories about biomedical news. Suffice it to say it is a sad and lengthy list. We need more open debate and discussion, not less.

AS PR and AS science need not fear open discussions of the vaccine issue, what they should fear is colluding with the CDC in behaving as if parents’ voices do not matter, regressions inconsequential, GI disease insignificant, adverse vaccine reactions non-existent, all successful biomedical interventions aberrations. I may well incorrect about many things but we can never be wrong in asking questions- questions our families want asked.

Mark Roithmayr and Dr. Geri Dawson have been made well aware of Shih and Singer’s serious lapses in judgment and failure to fully represent the community. Mr. Roithmayr appears to want to ignore this situation and its adverse consequences for our children. Maybe the parents who worked so hard to pass the CAA should ask him why?

Why I Do No "Walk For Autism"

Managing Editor's note: You can email Mark Roithmayr at mroithmayr@autismspeaks.org

Katie Wright has two young boys. Her oldest son, Christian, is severely affected by autism. He developed normally; smiling, talking, walking; only to lose every skill and every word by the age of 2 and a half. Upon the advice of medical professionals Katie and her husband were advised to pursue only high quality behavioral therapy, speech and OT for Christian. It had no meaningful impact on Christian until his parents sought help from DAN! doctors who treated the underlying causes of Christian's descent into autism. Christian has improved but still has far to go. He has Inflammatory Bowel Disease, the measles virus in his gut and an immune system akin to a late stage AIDS patient. Christian does not have a psychiatric disorder. Before autism, Katie Wright was the Clinical Director of Sexual Assault Crisis Center in Stamford Connecticut. Katie is proud to serve on the Boards of NAA and SafeMinds.

1 comment:

KateGladstone said...

If autism comes from the vaccines, Mrs. Stagliano, how did your third child (the completely unvaccinated one) become autistic?