I have just gotten an e-mail from a new organization that has formed called the autism science foundation. This organization seems to be very similar to autism speaks, except obviously it will be much smaller. There are some differences. The organization is being started by Allison Tepper-Singer who was featured in the infamous video in which she stated that she contemplated driving off a bridge with her autistic child in the car. She will be the president of the organization. Also Tepper-Singer recently resigned from her position at Autism Speaks due to the fact that she does not believe that vaccines are a causative agent in autism. Given the fact that Sally Bernard is on the board of directors of AS and the wish to appease parents who cling to the misguided belief that vaccines cause autism, AS has started to fund projects that seek out a connection between autism and vaccines. Tepper-Singer in her email emphasizes the fact that the autism science foundation will not fund research related to vaccines and conceded that the evidence has exonerated vaccines as a cause of autism. She has started with organization with Karen London who along with her husband, psychiatrist Eric London started NAAR (National alliance for autism research) which along with CAN (cure autism now) merged with autism speaks about four years ago. Also Paul Offit who wrote the book false prophets of autism, which goes into the work showing vaccines do not cause autism is also on the board of directors. For these reasons it seems there is a good chance that it will remain a "pro-vax" organization. However, one never knows what pressure from the many parents of autistic children who insist their child became autistic because of a vaccine will influence this fledgling organization at some point. Also on ASF's board of directors:
Michael Lewis, attorney, mediator and grandfather of a child with autism. ASF’s Scientific Advisory Board, still in formation, includes Dr. Emanuel DiCicco-Bloom (UMDNJ-Robert Wood Johnson Medical School; past program chair of the International Society for Autism Research); Dr. Ami Klin (Yale Child Study Center); Dr. Harold Koplewicz (NYU Child Study Center); Dr. Sharon Humiston (University of Rochester); Dr. Eric London (NYS Institute for Basic Research in Developmental Disabilities and co-founder of NAAR); Dr. Catherine Lord (University of Michigan); and Dr. Matthew State (Yale Medical School).
It will be interesting to see how and to what extent this new organization becomes another whipping boy for the ND movement. I still remember the pre-autism speaks days when there was just CAN and NAAR. CAN and by extension Jon Shestack and Portia Iverson got the brunt of the ND criticism and abuse, including autistics.org's infamous and tasteless abortion cartoon. NAAR generated some protests but not to the same extent as CAN.
The organization is small, just starting out and clearly does not have the capital and resources of autism speaks, so it will remain to be seen how long they last and what sort of influence they have. Of course, one possible small advantage that they have is Tepper-Singer's seat on the IACC. With Singer tendering her resignation from AS, autism speaks has no representation on the IACC. Ironically enough, the neurodiversity movement, with Stephen Shore at the helm and who is another one of the public members ,has more representation on the IACC than AS itself, in spite of the fact Jon and Portia are on the board of directors of AS and it was CAN who originally lobbied for the combating autism act, whose only intention was to find ways to prevent and cure autism.
One other thing, on perusal of ASF's web site, that I am unclear on, is the extent that they will do lobbying of government agencies in the manner that AS has done. If they do, given that they are small and just starting out they will not likely have the same influence. I am a believer in the old saw of too many cooks spoil the broth. It is just better if these organizations fund scientific research that will lead to advances in the understanding of causes of autism and its possible treatments, assuming prevention and cure may not be realistic goals in the foreseeable future.
Personally I am glad this second organization was created. Having one monopoly like Autism Speaks leads to an organization that will get less good things done. I don't feel that autism speaks should be the only game in town. Also, there are alternative organizations to go to for scientists who need funding. Also, their emphasis on vaccines not causing autism is welcome. Vaccine research has just been one dead end after another and has nothing promising to offer.
Time will tell what the future bodes for the autism science foundation.