on Autism Speaks

[Guest guest]

I am encouraging everyone who donates to AS to let them know they will not do so

anymore until they come through with their promise to help investigate the

environmental issues around the autism epidemic including vaccines. Dr. JM

From www.ageofautism.com:

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, 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.