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Autism Science Foundation president Alison Singer is well known in the autism community for her formative role at Autism Speaks, for her controversial participation in their Autism Every Day video, and for leaving Autism Speaks to found the Autism Science Foundation.
She a role model for autism parents struggling to balance advocacy with positivity and work with family, especially those who tirelessly investigate ways to help our children lead fulfilling lives, actively respect neurodiversity, and continue to educate ourselves and others about autism perspectives and attitudes.
Read on to learn about the founding and goals of the Autism Science Foundation, how "We [at The ASF] are really going to follow the science and not let the politics trump the science," why she thinks parents support questionable autism cures and causes, how her relationship with the Neurodiversity community has evolved, and what our primary message about autism should be.
SR: Why was the Autism Science Foundation (ASF) founded? What gaps will it fill?
AS: The Autism Science Foundation’s mission is to support autism research by providing funding and other support to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. We also provide information about autism to the general public and work hard to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.
ASF adheres to rigorous scientific standards. We believe that outstanding research is the greatest gift we can offer our families. Every research dollar needs to count. We are thrilled that after only five months of operations we have already released our first request for scientific grant proposals. Our first round of grants will support graduate and medical students interested in pursuing careers in basic and clinical scientific research relevant to autism spectrum disorders. The grants will provide funding for them to begin their research and thus their careers in this field. This is really a critical part of the process. Just last week at the IACC (Interagency Autism Coordinating Committee) Scientific Workshops the concept of recruiting young, energetic scientists with new ideas into the field was highlighted as a critical priority.
SR: How will the ASF efforts differ from those of organizations like the Boston Autism Consortium or the M.I.N.D. Institute?
AS: ASF is committed to supporting outstanding science and scientists but we don’t do research ourselves. We have great respect for the work being done at the MIND Institute, by the Boston Autism Consortium and by other centers and universities across the country and around the world. As a public charity, our focus is on raising money from the public to support the type of work being done by these groups and other groups that are taking a scientific approach to understanding what causes autism and to developing new treatments for kids, teens, adults, and senior citizens. Raising money is not easy, especially in the current economic climate. Our families are often tapped out because they have huge expenses for therapy that are not covered by insurance. Our goal is to broaden the base of donors so that we are able to provide more funds to scientists and support their research efforts.
That said, the response from the parent community has been extremely supportive. The response from the scientific community has also been very supportive. People are just very enthusiastic about the idea that we are really going to follow the science and not let the politics trump the science.
ASF is also very committed to sharing and disseminating information about autism research and treatments. Our website has a very popular “Autism Headlines” section where we post the latest news about autism research. Our “Autism Science” section publishes links to the latest studies and provides commentary and analysis from the investigators themselves. We also run a bi-monthly program called “Science and Sandwiches” that brings scientists and family members together to talk about research. These have been great opportunities for information to flow in both directions. It’s critical for scientists to hear from families as well as for families to understand the latest research discoveries. The information that scientists glean can’t help families if families don’t know about it.
SR: Does the ASF plan to support research into the heterogeneity of autism, i.e., on whether individuals at opposite ends of the autism spectrum should be given the same label?
AS: In our current RFA (request for applications) we are inviting applications in all areas of related basic and clinical research. We are particularly interested in human
