A Message to Autism Speaks' Singer and Shih: ENOUGH ALREADY!

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 been 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, 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 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 minuscule 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 overtime 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, regression is inconsequential, GI disease is insignificant, adverse vaccine reactions are non-existent, all successful biomedical interventions are aberrations. I may well be 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?

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.

Comments

[tracy]

Well Katie: one down, one to go!! We're with you all the way. What do you have up your sleeve for Dr. Shih?

[Twyla]

According to a story in SafeMinds' e-newsletter "Finding the Truth" today:

"During the most recent meeting of the Interagency Autism Coordinating Committee (IACC) a substantial amount of the strategic plan was discussed and adopted. However, equally significant in my mind was the display of unity throughout the day by the advocates who comprise the public member portion of the committee.

"Public advocates Lyn Redwood, of SafeMinds, Dr. Stephen Shore, self advocate, and Lee Grossman of Autism Society of America spoke in unison along with Alison Singer, of Autism Speaks and Christine McKee, parent of an ASD individual also voting similarly for the majority of the day. It is hard to describe the power held in these hands, particularly when raised together. Toward the close of the day, Lyn Redwood noted that during many critical votes on research initiatives these five hands went up against those representing federal agencies. Dr. Thomas Insel, Director of the National Institutes of Mental Health (NIMH), acknowledged that while it was true that the advocates were of a common mind set, the federal agencies were voting against the noted objectives due to feasibility and to be consistent with what could reasonably be accomplished. Many agency heads nodded in agreement with this summation of their actions."

Hmmm. Is there hope for Alison Singer?

[Lorenzo's Goil]

Tsk tsk, Lorenzo - such bad form. Don't they teach you better out there in Steel city?

Katie is the daughter of the founders - even if you have a big fat grant from AS, even if you're Nancy Minshew herself, Katie knows a hell of a lot more about them than you do.

Kim

[Lorenzo]

You people need to move on and find another scapegoat

[Shaun]

Thank you for sharing this information. It only confirms what I have long suspected. Well done!

[Wade Rankin]

As society has become more complex, we have become far too willing to look to media, authority figures, and "trusted institutions" to do our thinking for us. We need to pay attention to the man behind the curtain, because he may not really be a wizard. Thanks, Katie, for pulling back the curtain and giving us a peek.

[Carmen Goldman]

Thank you Katie for telling it like it is.

My years of walk-a-thons and other fund-raising activities ended when I realized most of my funds weren't going to help the parents or the children. I felt like we were getting raked over the coals again and again by the institutions that were supposedly designed to "help" us.

[NoMercury]

Katie, thank you SO much for yet another courageous, selfless act for our children. This could not have been an easy piece to write, nor do I imagine that it was done without tremendous forethought and trepidation. I applaud you for so many things, but this especially.

As you indicated, this was just a scratch to the surface of what is wrong at Autism Speaks. In the past, I have been quite vocal and critical of Autism Speaks and their true agenda. The difference between us - I was excoriated for daring to speak out years ago. So this piece is very bittersweet to me.

Last year at Autism One, I, along with a few other courageous parents, questioned Peter Bell and his dubious and highly suspect connections to Big Pharma (and the endorsement of Risperdal). My questions were never really answered and he (as well as other AS "supporters") became so uncomfortable with the direction of my questions that Peter Bell ordered his goons to take the microphone away from me. I may have been temporarily silenced but the questions did not go away. Needless to say, the questions were a formality as I already the answers from my own forensic accounting investigation...Autism One was merely a vehicle to make it public.

There are more problems at Autism Speaks than just Allison Singer and Dr. Shih. Follow the money...backwards. It's not pretty and certainly not comforting for parents of vaccine-injured children. From GE’s strong financial ties to the vaccine industry, medical malpractice insurance and even Thimerosal use to Bernie Marcus and his pro-business, strong anti-litigation agenda (his connections to Kennedy Krieger and their “autism is psychiatric and/or genetic” stance are particularly troubling as well). If that doesn’t scare a parent then his strong support of the CDC should be give one pause. I pray with this bold courageous step that you have taken that parents and others will give Autism Speaks closer scrutiny. With the right leadership and transparency, they could help us solve this horrendous problem of “autism” and other similar neurodevelopmental disorders.

I agree that SafeMinds and the National Autism Association are to be commended for their efforts. They have my support and gratitude even though we disagreed on the Combating Autism Act. My late husband, Dr. Alan Clark, served on the Scientific Advisory Boards of both SafeMinds and the National Autism Association so these organizations and individuals such as Lyn Redwood and Rita Shreffler just to name a few will always hold a special place in my heart. There is more that binds us together than separates us.

Speaking of the CAA, I believe that I have earned the right to say, “I told you so” as I predicted that the CAA was nothing more than a Trojan horse. I was not alone in these predictions…Bernie Rimland, Bob Krakow, Bobbie Manning, Linda Weinmaster, Amy Carson, Angela Medlin, Leslie Weed, Sally Coletti, Wade Rankin and numerous others (if I’ve forgotten anyone in particular please forgive me) also voiced similar concerns about CAA and Autism Speaks in particular. Granted, they were more diplomatic about their objections than I but nonetheless, we were right. The CAA was shoved down the throats of parents…Autism Speaks shoved the hardest and made little effort to hide their bullying techniques. Unfortunately, at the time, few in the “autism” community wanted to admit the truth that was staring them in the face so those of us that courageously spoke out then were labeled “trouble-makers” in an effort to silence us or alienate us from the community. To some extent it worked. I became so disheartened at the venom aimed at me from the “autism” community that I largely withdrew working with most parents (I make a few exceptions…when Iowa calls, I try to be there if at all possible). It doesn’t mean that I have stopped working for the children but I have kept parents at a distance for the past two years as a result of the CAA debacle.

This community is so quick to label people “heroes” and in many instances, rightfully so, but there are many among us that know the real heroes of our children have already departed this life…Bernie Rimland, Liz Birt and even my late husband, placed their lives and professional medical and legal careers on the line to fight for our children. I’m glad they are not here to see have far backwards we have allowed Autism Speaks/NAAR/CAN/ASA and their ilk to push our fight for healing, justice and truth for our children. Please do not let Katie’s courageous actions be in vain…demanding change and transparency at Autism Speaks is the right first step.

Lujene G. Clark

[Kathy]

Katie ... you are a blessing to us. I can only imagine how hard the truth of all this is when your parents started Autism Speaks because of Christian. I just can't wrap my brain around what is so hard for people to see ... thank you for your honesty and sharing of this information. I've been trying to make peace in my heart on Austism Speaks since so many parents believe it is the organization to raise money for if you have a child with autism. I just can't bring myself to give them a dime. I had a heated exchange with a doctor the other day who recently completed their residency. I'm not the best debater, but I tried my best. One child at a time, one doctor at a time. The truth will be unleashed someday unfortunately too late for the new kids and parents joining our wonderful group ...

Kudos to you for speaking the truth when you could easily crawl in a hole ... my best to Christian and his continued improvement in health.

[anonymous]

This fight over food policies deserves the attention of all parents, including those here...

http://www.lavidalocavore.org/showDiary.do?diaryId=694
Child Nutrition Reauthorization Act

http://www.nytimes.com/2008/12/11/opinion/11kristof.html?_r=4
Obama’s ‘Secretary of Food’?
By NICHOLAS D. KRISTOF
Published: December 10, 2008