FW: [Autism_NY_News] A favor

[Guest guest]

From:

Autism_NY_News [mailto:Autism_NY_News ] On Behalf Of Marty

Sent: Wednesday, December 17, 2008

9:10 PM

To: Autism_NY_News

Subject: [Autism_NY_News] A favor

From: GRASP

[mailto:mjcarleygrasp (DOT) org]

Sent:

Wednesday, December 17, 2008 11:50 AM

To:

Subject: A

favor

Dear all:

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 mroithmayrautismspeaks (DOT) org

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

-----------------------------------------------------------

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 mroithmayrautismspeaks (DOT) 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.

GRASP The

Global and Regional Asperger Syndrome Partnership, Inc. 666 Broadway, Suite 830

New York, NY 10012 p + f = 1. www.grasp.org