From GRASP~ A favor

[Guest guest]

Greetings:

I am FF this to you as a favor for GRASP which is an adult support group for AS knowing that politics are off topic for ASPIRES but the truth is Autism and our numbers have made this a political force/issue in many circles for years. You saw "our" presence in the Presidential Elections in the USA for the first time in history. Never before had Autism been mentioned by name when they campaigned as our numbers are too BIG to be ignored any more. U also see our perspectives and advocacy on almost any given topic associated with Autism are polar opposite at times as no 2 with autism are alike. Our stories and experiences are different at times with a common thread that weaves us together.

This request from GRASP shows one of the many differences in our community over the "vaccine" issue. I post this so you can make an informed choice. Either choice is correct as it is "your" choice.

This issue has not been resolved in the eyes of "many" parents and the first cases that have hit the courts in the USA will be decided within the next 60 days hopefully giving parents some answers from the Federal Bench in the USA one way or the other. One article cited the courts were given more than 2,000 documents from both sides to review. These decisions will be BIG in the USA with more cases filed behind them regardless of the decision's. I will post it once they have been released. Some say it is not over till it is over and that will only be when familes get answers to questions they have been asking for years which are "why?" and "how can I help?"

Enjoy!

Dear all:

The requested favor needs some preamble/briefing. Please bear with me :-)

As many of you know, Bob and Suzanne are the founders of Autism Speaks, an organization that we’ve had some ideological differences over, as well as some less-noticed agreements.

And as many of you also know, the s were moved to found their organization by a significantly-challenged grandson. But about a year or so ago, the New York Times ran a cover story on disagreements over the vaccine issue amongst the family: Daughter , whose influence in starting the organization is unknown (at least to me); believes that her child got his autism from vaccines.

Her parents (and their organization) have been non-committal on the subject. This could mean that ’s parents, who run Autism Speaks, do not believe that we got our Autism or Aspergers from vaccines, but that by being silent on the subject they are simply trying not to anger their daughter and risk further organizational embarrassment.

But it could also mean that Autism Speaks is on the fence about this subject.

After the Times story came out last year, appeared to have less to do with the organization. The press releases back and forth amongst daughter and parents were rather terse, if not an outright bizarre way for a family to communicate. Well, the family feud is back again, but with a possible motivator for us to get involved.

Daughter has recently gone public in an “Age of Autism” column in which she cites two Autism Speaks employees as having prevented the organization from giving the vaccine issue the attention or funding she feels it deserves. At the end of her self-incriminatory verbiage (seen unedited below) she calls upon vaccine theorists to email Autism Speaks’ Executive Director Mark Roithmayr urging him (at the very least) to push Autism Speaks towards becoming an organization that supports vaccine theory.

I am asking you to email Roithmayr as well—in support of Autism Speaks’ not having become a vaccine theory organization; and in support of the two employees daughter clearly wants out. I know we’ve had disagreements with this org, but Autism Speaks becoming a vaccine theory outlet would be a very bad thing for the world.

The two employees are Andy Shih and Alison Tepper-Singer. Many people know Singer, and know of GRASP’s relationship with her. Whatever existing disagreements remain, she’s the one responsible for Autism Speaks eradicating language like “wiping out autism" or "making it a word in the history books.” ly, they don’t even use the word “cure” as much either. We need to keep Autism Speaks on this path. I might get called a “sap” for saying this, but they’re not just making these changes for better PR; they’re actually starting to get it. Please write in your emails that if these two employees are indeed against vaccine theories, that they should be supported, not denounced.

Some suspension of animosity might be necessary, be it issues with either Autism Speaks, or with Shih and/or Singer personally. But this is bigger than those old arguments. And a mailbox full of respectfully written emails to Roithmayr would probably go a long way in preventing Autism Speaks from “going vaccine.”

To us at GRASP, the vaccine issue is a dead one, albeit a frustrating one; maintained only by the leadership of racist shock jocks and ex-playboy bunnies, backed up by lawyers wishing to cash in on fantasized lawsuits, and begun by a man whose every “study” has been discredited for faulty research practices. We cannot demonize their followers, however, for there are tragically human reasons why such vulnerable people have bought into these ideas, and why as a consequence this stuff still fills our ears.

Their numbers are actually quite few. However, because they are loud, because the pharmaceutical industry is often its own worst enemy, and because the CDC and NIH have at times been rather cowardly in standing up to them and protecting a public they’re designed to serve, the theories persist. And we are sentenced to continuously listen to junk science, zealotry, and terminology that makes no attempt to refrain from intimating that GRASP’s members are chemical accidents. We don’t discount environmental triggers and exacerbators, but we do discount environmental causation. The sane world believes what we have to be primarily genetic (this issue is very much linked to the whole “cure” debate).

I could go on and on and on . . .

After reading below, please write in support of Singer and Shih to Autism Speaks Executive Director, Mark Roithmayr, at mroithmayr@... It’d also be great if everyone could use as the same words in the subject line . . . something like “I Respectfully Disagree with .” Write what you wish after that (just keep it polite :-)

Thank you for this favor. I promise, though, that preventing Autism Speaks from going in this direction is in all of our best interests.

mjc

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December 11, 2008

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

By

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 Offit, lunching with him on AS’ dime.

4) Singer called CBS “Evening News” to complain about Sharyl Attkisson’s investigative news story on Dr. Offit’s financial interests in the childhood immunization program. Singer copied Dr. Lou , 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. 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 stein 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@...

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 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, was the Clinical Director of Sexual Assault Crisis Center in Stamford Connecticut. is proud to serve on the Boards of NAA and SafeMinds.

GRASP The Global and Regional Asperger Syndrome Partnership, Inc. 666 Broadway, Suite 830 New York, NY 10012 p + f = 1. www.grasp.org