Monday, June 1, 2009

Autism Science Foundation : Rough Start?

Last month a new autism research organization was formed called the Autism Science Foundation (ASF). This organization was founded by Alison Tepper Singer after she left Autism Speaks with other refuges from Autism Speaks as well as the illustrious Dr. Paul Offit.

As I have written about before the goals of this organization seem to be rather particular. The main goals of the organization seems to be to fund the "right" scientific research into autism and to make clear that vaccines have nothing to do with autism. I always thought that scientists were willing to go where ever the data took them regardless of whether they thought they already knew the answer - but what do I know.

The ASF seems to be attempting to become a mainstream organization and appears to have the long term goal of replacing Autism Speaks as "the autism organization". So far they seem to be off to a rather rough start.

Take for example the situation with Alison Tepper Singer when she abruptly resigned from her position at Autism Speaks because of a disagreement on an upcoming vote on the IACC.

First, it is still a mystery how she knew about the vote being scheduled the next day because the other public members did not know anything about it. Nor should there have even been a planned vote that was organized outside of the normal structure of the committee.

Second, Ms Singer chose to announce her resignation via a press release from Every Child By Two, which is a prominent pro-vaccine organization. The announcement was released on the same day that she resigned which makes it appear that her resignation was not a spur of the moment decision but rather a pre-planned event.

If that was not bad enough Ms Singer decided to hang onto her seat on the IACC after her resignation; a seat that she had only because of her employment with Autism Speaks. She is now using this seat to represent the new ASF.

Given the fact that this is a brand new organization that does not yet have any real sort of presence or authority on the issues surrounding autism it is a mystery to me why Ms Singer feels that it should have a voice in the national plan for autism. If this new organization wants to be included in the national plan perhaps they should take the time to do the work to get there on their own without stealing from the hard work of others?

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