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How the Autism Science Foundation Came to Be: An Interview with Alison Singer, Founder

In February, 2005, Alison Singer was working at NBC where she knew Bob Wright, then the Chairman and CEO of NBC Universal. In addition to her work in television, Singer was also the mother of a child with autism; when she heard that Wright’s young grandson had also been diagnosed with autism, she reached out to offer him support. Wright,
along with his wife, decided to form their own autism-related non-profit, and they invited Singer to join them. Reluctant to take on a job that required a great deal of time away from her children, Singer became acting president and then Executive Vice President of the then-fledgling organization Autism Speaks.

Within a few years, Autism Speaks had become a huge player in its niche, controlling a large percentage of vailable money for autism research, programs, and services outside of federal agencies. But there were issues. Specifically, says Singer: “…at that time, in 2009, there was a real split in the autism community – scientists
versus a group of families – about the issue of vaccines and autism. The science was clear, but there was a pocket of resistance in the community. At Autism Speaks, that constituency was quite vocal.”

Finally, differences between Singer and Autism Speaks led to a rift. Singer explains: “I left Autism Speaks and founded the Autism Science Foundation with a group of parents and researchers who were ready to move forward and not keep pursuing a dead end. There are so many questions to address – and no time or money to waste.”

And Singer wasted no time at all: after leaving Autism Speaks in January, 2009, she and a small group of parents and scientists launched the Autism Science Foundation in April 2009. The mission of Singer’s organization includes a clear statement regarding autism and vaccines: “Vaccines save lives; they do not cause autism.
Numerous studies have failed to show a causal link between vaccines and autism. Vaccine safety research should continue to be conducted by the public health system in order to ensure vaccine safety and maintain confidence in our national vaccine program, but further investment of limited autism research dollars is not warranted at this time.”

The answers to the questions that follow come directly from Alison Singer.

What Inspired You to Found the Autism Science Foundation?

We founded ASF because we knew there was a need for families and scientists to work together – an unwritten feeling that scientists were on one side and families on another. But it doesn’t need to be that way. If families worked together with scientists, we could speed up the pace of research. Each side could also learn a lot from each other – families could learn about the process and speed of science; scientists could learn about families.

How Does Your Organization Differentiate Itself from Others in the Same Niche?

We looked at “where do we fit in autism funding and advocacy organizations?” The NIH and the Simons Foundation gives large grants to established researchers. So we are focused on grants to pre-docs, post-docs, early career researchers; we also offer grants for undergrad summer research and a gap year program for younger people. We see ourselves as building the pipeline of younger investigators, training the next generation of scientists. When you
can reach young, eager, smart scientists with new ideas, you can encourage them to devote their career to autism research. We can attract the brightest stars to autism research. NIH has cut back funds for this, and it’s important.

We fund gene discovery, treatment, and service delivery. We have grants looking at genes, brain studies, and treatment research. Gene studies help us understand proteins associated with autism which can lead to treatments. We also choose projects that are likely to lead to actionable information for parents – so they don’t wind up
trying all kinds of risky treatments in the absence of data.

What Challenges Did You Encounter as You Got Started?

We launched as the recession hit. It was challenging but we had a great message. Families were ready to focus on the science. We had a lot of support from families; we’ve increased fundraising and grant making every year for the past four years.

Of course there was a huge organization, Autism Speaks, which is our direct competition. They’ve done a great job building awareness of autism and of their organization. It’s hard to be the younger sibling. But we have a great message – and just one, clear message. We don’t have to adjust our messaging for different
audiences. We’re very clear, and that has really resonated in the autism community. Autism speaks does a lot of things well – but they do many things. We do just one thing but we do it very well.

How Do You Raise Funds for Your Organization?

We have groups that run all sorts of events to raise funds – art installations, Zumba-thons, etc., and we also have some large foundations that fund our work. But we want to grow the funding pie, not just compete with other autism groups for the same money. So we are looking to people who never funded autism before, and not just
say “X used to fund them and now they fund us.” We are looking for new sources of funding.

What Is Your Vision for the Growth of Your Organization?

We have four people on staff. We are hiring a science program manager because our science program is now large enough to merit that. That person will become a liaison between organization and scientists, and between scientists and families. They’ll be monitoring the progress of grantees, and translating that information into lay language so families can benefit from the science we fund. Other than that, that’s our size. A lean, mean organization; we take every donation seriously and use every dollar well.


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