Is Autism Speaks At War With Itself?

By David Kirby

“We are committed to exploring the role of vaccines”
– Autism Speaks President Mark Roithmayr

“The vaccine-autism issue has really been put to bed”
- Autism Speaks Vice President of Scientific Affairs Dr. Andy Shih

Do officials at Autism Speaks believe in a possible link between vaccines and ASD, or do they believe that the irksome issue has been settled for good, and now it’s time to move on?

The answer is yes.

Confused? You could hardly be blamed. If you listened to AS Co-Founder Bob Wright speak in England recently, you heard him say that immunization cannot be ruled out a possible contributing factor. And if you looked at new AS research grants, you would see money going to studies of thimerosal and vaccines.

But if you only paid attention to the words and deeds of some executives at Autism Speaks, you would probably surmise that the vaccine debate is kaput.

The “debate is over” people, however, hold influential and high-profile positions within the organization, leading one to wonder if Autism Speaks is at war with itself, or at the very least, suffering from multiple personality disorder.

On December 11, Bob Wright’s daughter Katie posted a blistering essay here (HERE) about two people at Autism Speaks who, she said, go out of their way in trying to pull the plug on vaccine-autism research.

“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,” Katie wrote.

Dr. Shih, VP of Scientific Affairs, is “an avowed disbeliever of vaccines as a possible trigger for autism,” she said. And Shih has 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.” Shih recently told reporters that the issue “has really been put to bed.”

Ms. Singer is head of media relations at AS, manages its website, and represents the group on the federal Interagency Autism Coordinating Committee. At the IACC, she recently voted against research of environmental causes into autism, Katie noted. (And let’s face it, if Katie did not have a son with autism, there would be no Autism Speaks).
And, Katie noted, both Singer and Shih, “maintain a strong professional friendship with Dr. Paul Offit,” the world’s leading advocate of stifling debate over vaccines and autism.

“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,” Katie wrote.
She ended by saying that AS President Mark Roithmayr had 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?”

Then, AOA’s Managing Editor noted: “You can email Mark Roithmayr at mroithmayr@autismspeaks.org”

So I did.

Here is his response, in its entirety. PLEASE NOTE that Mr. Roithmayr acknowledged my email very quickly, and had this written response back to me within 24 hours, on December 12. I regret the delay in publishing it.

"Autism Speaks unequivocally supports the tireless work of our staff and their passionate dedication to uphold the mandates and mission of our organization.  We value the wide range of opinions and voices of those across the autism community, and continually seek to foster open, constructive, and mutually respectful dialogue about the issues and challenges that concern us all.

In response to inquiries regarding  research initiatives and related activities, Autism Speaks’ broad-based agenda includes: 

o We support the efforts of the public members of the IACC to address changes in the NIH strategic plan which will serve the diverse and urgent needs of our community. 

o In 2008, as part of a special environmental factors initiative, Autism Speaks has provided $3.6 million in grants focusing on the role of environmental influences as risk factors for autism.

o We are committed to discovering the causes of autism, including exploring the role of both genetic and environmental factors, including toxins, hormones, vaccines, diet, among others.

o Autism Speaks is promoting the current efforts to restructure the way Health and Human Services agencies monitors and studies vaccine safety, including multiple agency oversight and greater funds allocated for vaccine safety research and administration.

o Autism Speaks co-founders Bob and Suzanne Wright, accompanied by Drs. Lou Cooper, Louis Sullivan and Sam Katz personally presented a comprehensive proposal regarding vaccine safety, monitoring, oversight and funding to the Secretary of Health and Human Services Mike Leavitt.

We are hopeful that the new federal administration will follow up and adopt the proposals and continue to build upon the momentum and gains that the entire autism community has helped achieve.”

It’s a strong statement, and a welcome one. But it doesn’t quite clear things up.

On the one hand, Autism Speaks’ Executive VP for Communications and Awareness votes against federal funding of vaccine-autism research as an official representative of the group, while its VP of Scientific Affairs tells the media that the vaccine debate has been “put to bed” and that, “There is no merit to studying over-vaccination as a trigger for autism."

On the other hand, the President of Autism Speaks tells me that his organization is “committed” to vaccine-autism research and “hopeful” that the Obama Administration will share in that commitment.

Finally, I just noticed that Autism Speaks has posted a “Statement of Vaccine Research and Safety” on its Website. I don’t know how long it has been there, nor what influence, if any, that Katie Wright may have had over it: AUTISM SPEAKS: Statement on Vaccine Research and Safety (HERE). 

Autism Speaks is committed to the health and well-being of all children. As such, we support the programs that ensure the public health, including an effective and safe immunization program designed to prevent major diseases. Immunization programs have been very effective in reducing mortality, morbidity and costs associated with common childhood diseases. Today's parents no longer need to worry that once dreaded diseases like polio and smallpox could be threats to their children.

Public trust in immunization programs must be protected. Thus it is critical that we take steps now to do all we can to affirm the public confidence in the safety of vaccines.

Autism Speaks is committed to actively supporting research to find answers to the following questions;

• Are there adverse events from vaccines that impact neurodevelopment over time?

• Are common adverse events occurring more frequently than before? If so, what changes have occurred and why?

• Does the use of combination vaccines or the practice of giving several vaccinations in one day confer increase risk for adverse events?

• Are there subgroups in the general population that exhibit more adverse events than others?

After reading this statement, I am fairly certain about one thing: Andy Shih and Alison Singer might want to get with the program – or get a new job.

David Kirby is author of Evidence of Harm, a contributor to Age of Autism and a founding contributor to Huffington Post.

Comments

[Richard W. Brady]

I am a Pharmacist by profession and a Ph.D. candidate writing my dissertation on Autism. The clinical evidence supporting brain allergies as a cause of autism can not be overstated. The evidence clearly reveals that autism is not genetic but a cause and effect disorder. I contacted Interactive Autism Network (IAN) and Autism Speaks looking for current research and grants to conduct my research.. They were very interested in speaking with me until it came out that my research was directed at presenting the facts concerning Thimerosal and other mercury laced preservatives in vaccines as well as foods containing chimicals that are linked to childhood onset autism. IAN literally hung on me and later I could not get either organization to return my phone calls. A nation that will sacrifice their own children in the name of profit is evil beyond words.

[jacqueline gay]

I AM SO FRUSTRATED. WE REQUESTED DONATIONS IN MY MOTHER'S NAME AT HER FUNERAL AND WOULD LIKE TO SEND THEM TO Autism Speaks. WE WOULD LIKE THE GENEROUS PEOPLE WHO DONATED BE ACKNOWLEDGED,SO THEY WILL KNOW THE MONEY WENT WHERE IT WAS INTENDED. I have contacted someone who said they would get back to me but did not. Do they not want the donations? My grandson is autistic so I know there is a great need, but who cares???.

[bitter, jaded and disappointed]

Based on my experiences with Autism Speaks, i think it is a total mess. I will never send them another donation until they start really helping people with autism.
I have been involved in lengthy expensive litigation with my child's school district. I win my case at every level and the school continues to appeal the decision to the next level. I applied for and was awarded a family legal support grant from Autism Speaks. I received a letter in writing stating so. However they never honored it. They would never answer or return my phone calls. The contact person was always changing. It was a mess. It has been over a year now, I gave up. What has autism speaks done to improve the lives of people with autism? (besides funding irrelevant and bogus research?)

[Tanners Dad]

WOW! Check out Autism Speaks news today for December 29th Six articles from our point of view. Five directly linking to Age of Autism. Maybe our emails woke them up a little? What do you think?

[John Stone]

I welcome the much more tolerant tone of R Karcher's new post. However, I would point out that the focus of this article was not on bio-medical treatments, but on vaccine damage, and officers of Autism Speaks misusing their position to further obstruct long delayed research. Not only do these represent profound differences but also reflects on the organisation's integrity. To dismiss concern about what has happened as "bickering" is to trivialise something immensely serious.

[John Stone]

I welcome the much more tolerant tone of R Karcher's new post. However, I would point out that the focus of this article was not on bio-medical treatments, but on vaccine damage, and officers of Autism Speaks misusing their position to further obstruct long delayed research. Not only do these represent profound differences but also reflects on the organisation's integrity. This is a very serious matter - to characterise concern about it as "bickering" is decidedly unfortunate.

[R. Karcher]

John Stone missed the point. I am advocating more discussion. In fact, I want all points of view voiced in a civil manner. Autism is as different to one child as it is to another so your experience living with it offers a completely different perspective. To AOA promoting biomed is the chosen path. To AS and others it is to create awareness the issue of Autism in general. AS still has much to do but in the same breath biomed is not the cure that many advocates proclame. In fact, I am of the opinion that promoting biomed and DAN Dr.'s as a cure or a way to defeat autism may harm Autism the issue. Many uninformed or ignorant of the issues facing families with Autism see and hear about biomed and DAN Dr.'s and believe that all those impacted by Autism can be cured by biomed treatments etc. Unfortunately that is not the case. To see a different perspective of my view check out the link. Keep the issue alive and in the face of all who can help with your particular issue. If yours is biomed, creating awareness, acceptance or whatever good luck. Ours is making sure that our daughter has the help and love she needs in a nurturing environment.

[Jen]

Sorry but I find these parents who spend hours and hours walking for Autism Speaks, fundraising for Autism Speaks, talking about how wonderful Autism Speaks is and so on completely pathetic. It seems so many of them are attached to ABA centers who are nothing but money whores themselves. It always seems to be the same theme of needing more and more money when they already rake in thousands. Wake up people, this organization is a joke.

[John Stone]

R Karcher

That sounds simply like a bad tempered attempt to close down reasonable discussion.

It is very clear how AS is operating as an exercise in political exclusion. After a decade of this deplorable lobbying exercise it is not surprising that people are fed up with it.

[R. Karcher]

I am getting tired of the infighting amongst the Autism community. It is clear that AOA has a beef with AS and other organizations take issue with both and bla bla bla... cut the bull pucky. Do your thing AS and others will do their thing and we can all get along. As for me, my daughter is having a meltdown in the other room and bickering is doing nothing to help me or my daughter. Respectfully.