Fw: [BioMedHeads] FW: : Powerful piece about Autism Speaks

[Guest guest]

http://www.ageofaut ism.com/2008/ 12/a-message- to-au.html

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 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 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 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.

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 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?

Managing Editor's note: You can email Mark Roithmayr at mroithmayr@autismsp

eaks.org

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.

Best,

KIM