Q&A with ASF Founder, Alison Singer.
Q: What is the mission of the Foundation?
A: 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.
Our grant funding is targeted at younger scientists; pre-doctoral students, post-doctoral fellows and early-career tenured faculty (assistant professor level), enabling them to collect pilot data in new areas of investigation. Many of our grantees have leveraged their ASF funding into much larger grants from the National Institutes of Health and other government agencies.
ASF conducts workshops and seminars around the country to share the latest autism research with stakeholders, and to foster communication between scientists and families. ASF also provides scholarships to parents, individuals with autism, special education teachers, healthcare professionals and other stakeholders to enable to them to participate in the International Meeting for Autism Research.
ASF advocated successfully for a new medical subclassification for autistic wandering, which became possible only after an ASF-funded wandering study was published in Pediatrics, the official peer-reviewed journal of the American Academy of Pediatrics. ASF is currently working to create an “autism alert”, (similar to the AMBER alert) to mobilize recovery resources when a child with autism wanders.
ASF serves as a strong voice within the autism community and in major media, and is frequently asked to comment publicly about autism-related news events.
ASF recently launched a public awareness campaign to encourage brain tissue donation so that scientists can investigate the neural underpinnings of autism. Earlier this year, we launched a campaign to raise awareness of the critical needs of adults with autism.Q: What prompted you to found the organization?
A: According to the CDC, 1 in 88 individuals is diagnosed with an autism spectrum disorder. Despite that high prevalence, autism research is grossly underfunded. We need to understand the causes of autism and we need to develop new and better treatments for autism for infants, school-aged children, teens, adults and senior citizens. Our organization mobilizes families to raise critically-needed money for autism research.
My 16 year old daughter is severely affected by autism. I founded ASF to get answers for her and all the individuals like her who are drastically challenged by autism.
Q: How did you set goals for the organization when you founded it?
A: Our goal is to fund all the autism research that can provide answers for families. We focus on projects that provide useful, actionable information. ASF was founded in 2009. Each year we have been able to increase the number of grants we offer by 20-50%. We expect to show similar growth in 2013.
A: We measure the impact of our research grants by the value they provide to real people. We also measure the multiplier effect of our funding which is the amount of funds scientists are able to attract from the NIH or other funders using the pilot data they collected via their ASF grant. We also ask families directly to rate the value of the programs we offer and to suggest speakers and topics for events.
Q: What have been the greatest challenges?
A: We urge families raising children with autism to rely on evidence-based interventions and treatments that have withstood the rigor of double-blind, placebo controlled trials. In many cases, parents still gravitate toward quick fix, “cure du jour”, unproven, often dangerous treatments in an effort to cure their children’s autism. These can put children at risk for permanent harm and even death. We urge families to read the science and to provide evidence based treatments for individuals with autism.
Q: What’s your top fundraising tip?
A: Ask! If you don’t ask, you don’t get. You’d be amazed at the number of people who, after I finally asked for money, responded “I’ve been waiting for you to ask” and then donated.
Q: What’s the most critical lesson you’ve learned about nonprofit management?
A: We have a board member who responds to each and every request with “happy to.” It’s amazing the lengths to which he goes to help others. His behavior has really inspired our staff and now we all try to answer every request we receive with “happy to” (even when we’re not so happy to). When you put yourself out for others, others will do the same for you. Our team’s willingness to go the extra mile has really solidified our relationships with stakeholders.
Also, it’s important to recognize that every stakeholder brings a unique perspective. It’s important to encourage everyone to donate his or her unique gifts in a way that is meaningful to them, whether that is time, money, energy, or encouragement. Everyone has something valuable to contribute.Q: What changes do you anticipate in the nonprofit landscape over the next five to 10 years?
A: The weaker economy has made fundraising even more challenging. Community needs are higher and donations are lower. Even though every family is facing greater economic challenges, it’s important to remind people that now, more than ever, is the time to support the vital work being done by the non profit community.
Q: How can others help support your organization’s mission?
A: One way to support our mission to advance research is to make a financial donation, however small or large. This allows us to continue to award grants to scientists doing cutting-edge research which translates into actionable information for people with autism and their families. Another way is to participate in research. We need people with and without autism to participate in scientific studies. Studies are taking place all over the United States and around the world. You can learn more on our website.
Q: Recommended reading and links:
A: The Autism Science Foundation website is a great resource for people looking to learn more about Autism Spectrum Disorders and the research that is currently being done in this field.
Other great resources include:
- Centers for Disease Control and Prevention
- National Institutes of Health
US Department of Health & Human Services
- Autism Spectrum Disorders: What Every Parent Needs to Know -American Academy of Pediatrics, Alan I. Rosenblatt (Editor), Paul S. Carbone (Editor)
- Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure -Paul Offit, MD
- A Practical Guide to Autism -Dr. Fred Volkmar and Dr. Lisa Wiener