Autism Blog - Action For Autism

Singer resigns from Autism Speaks

Alison Tepper Singer has resigned from Autism Speaks over the question of vaccines and autism. Singer apparently accepts the scientific consensus that there is no evidence of a link between vaccines and autism, unlike her ex-employer, Bob Wright.

The Interagency Autism Coordinating Committee (IACC) was meeting this week to vote on a draft of the Strategic Plan for Autism Research. It contained two proposals for further research into vaccines. Alone among the six public members of IACC, Singer voted with the federal members of the committee to remove these proposals from the plan so they could be examined by the National Vaccine Advisory Committee.

The decision was condemned by Autism Speaks in a press release because the proposal to refer these proposals back was not communicated to the public members prior to the meeting. According to Wright because of this “last minute deviation” the plan “is tainted and cannot be supported by the autism community.” This is curious because the press release also tells us that:

Autism Speaks Executive Vice President Alison Tepper Singer was the sole public member to cast a vote in support. The evening prior to the vote, Singer submitted her resignation to Autism Speaks – which was accepted – based on her intention to vote on certain Strategic Plan vaccine safety matters in a way that diverged from Autism Speaks’ position on this issue.

So Singer knew about the proposal the night before and presumably so did Autism Speaks when she told them why she was resigning. So what is Autism Speaks up to? I have written previously about the tension within Autism Speaks between Wright’s agenda and the way he runs Autism Speaks like a private corporation and the scientific agenda he is funding. I think that this latest posturing by Wright over the alleged “last minute deviation” is an attempt to express his support for the vaccine hypothesis. But by dressing it up in procedural rhetoric he is also attempting to keep his scientists onside.

Will any scientists follow Singer and resign from Autism Speaks? And where will she lead? Obama is planning a massive injection of funds into scientific research as part of his recovery plan. If the life sciences get their share it will be interesting to observe the changing landscape as private funding is squeezed by the recession (how many celebrity donors were burned by Madoff for example?) while Obama introduces a New Deal for publicly funded science.

Singer has shown herself to be more than capable in her role at Autism Speaks. She has made mistakes in the past, most notorious being her comments in the film Autism Everyday. But her espousal of scientific evidence may lead to advancement within the Obama administration. Such a prospect may reinforce the commitment to scientific principle among more of the staff at Autism Speaks and prompt more resignations.

Sullivan has posted the full text of Singer’s own press release and the one from Autism Speaks with a commentary on Left Brain Right Brain

January 16th, 2009 Posted by Mike | Autism Speaks, interagency autism coordinating committee, vaccines | 7 comments

Talk back to IACC

One of the provisions of the Combating Autism Act passed in the USA

“requires the Interagency Autism Coordinating Committee (IACC) to develop and annually update a strategic plan for ASD research.”

As part of the process the IACC consults with members of the autism community through a number of mechanisms. Some parent advocates and one autistic person are members of the IACC . They get the chance to meet with researchers and clinicians and shape the autism agenda. There is another overlapping group the IACC Strategic Planning Workgroup and four scientific workshops.

Unfortunately, for reasons I have been unable to fathom, one of the parent advocate groups that has been involved with IACC is the anti-vaccine group Safe Minds. Lynn Redwood, Laura Bono and Mark Blaxhill have had a disproportionate voice in IACC’s workings to date. I doubt that they have been able to influence the scientists with their ideas but I am concerned that the research community is getting the wrong idea about the autism community if it thinks that these are typical representatives of us. I am also upset by the way they have operated within IACC. They make their unfounded statements in the meetings and feed them back to their media friends who report them as if IACC support them. Take this example from David Kirby.

July 15, 2008 - A workgroup report of the IACC (the Interagency Autism Coordinating Committee, which includes HHS, CDC, NIH and others) says that some members want “specific objectives on vaccine research” included in the new, multimillion-dollar national autism research program, as mandated by Congress in the Combatting Autism Act.

Notes from the meeting indicate that workgroup members want federal researchers to consider “shortfalls” in epidemiological studies cited as proof against a vaccine-autism association (by Offit, Peet, et al); as well as a specific plan “for researching vaccines as a potential cause of autism.” The workgroup also says that the final research agenda should “state that the issue is open.”

Part of the problem is that the scientists do not argue back. Perhaps they believe that autism is such a terrible affliction that they would be wrong to criticize parents. But these Sefe Minds parents are cynically abusing their politeness to pursue a political agenda and misrepresenting the scientists silence as support for their ideas.

Now we have a chance to put that right. IACC has called for public comments in a Request for Information on the Interagency Autism Coordinating Committee Draft Strategic Plan for Autism Spectrum Disorder (ASD) Research.

They include instructions on how to make you input

Responses will be accepted until September 30, 2008 via email to iacc@mail.nih.gov. Please limit your response to two pages (approximately 1,000 words) and mark it with the RFI identifier NOT-MH-08-021 in the subject line. You will receive an email confirmation acknowledging receipt of your response, but will not receive individualized feedback on any suggestions. The collected information will be reviewed by the IACC, may appear in reports, and shared publicly on the IACC website: http://www.nimh.nih.gov/research-funding/scientific-meetings/recurring-meetings/iacc/index.shtml.

I suggest that it would be good for them to get as many responses as possible from anyone with a connection to autism - autistic people and their familes, researchers and practitioners - to demonstrate the full extent of our community and show that Safe Minds is unrepresentative of our views. And you do not have to be American to respond. The US research budget for autism is massive in comparison to anything else in the world today. The direction that US research takes will influence researchers all over the world. And their findings will impact on the world autism community. We are all affected by this. We should all make our thoughts known while we have this opportunity.

My Background

I am Mike Stanton. I live and work in the UK where I teach children with severe learning difficulties, many of whom are autistic. My adult son is diagnosed with Asperger Syndrome. I am a member of the National Autistic Society. I speak and write on autism.

My book, “Learning to Live with High Functioning Autism” is available in a Spanish translation, Convivir con el Autismo. I have also contributed a chapter to Asperger Syndrome in Adolescence edited by Liane Holliday Willey.

ACTION FOR AUTISM is a reaction against names like Action Against Autism and Defeat Autism Now! Names like these suggest to autistic people that we are against them as people. You may not mean that. But if you care about autism you ought to care about the feelings of autistic people and not use language that makes them angry or upset. If you disregard the feelings of autistic people do not be surprised if you are disregarded.