PHILADELPHIA (September 10, 2014) – The A.J. Drexel Autism Institute at Drexel University has received a grant of $3.6 million from an anonymous donor to launch four major initiatives of its Life Course Outcomes research program, focused on understanding and improving quality of life issues for people on the autism spectrum at all ages. This program is led by Autism Institute professor Paul Shattuck, PhD, a nationally recognized expert on these issues.
"Finding ways for people on the autism spectrum to pursue fulfilling lives as full members of the community is vitally important work," said Drexel University President John A. Fry. "Thanks to this incredibly generous gift, Drexel can help Dr. Shattuck expand his pioneering work in this area and further the A.J. Drexel Autism Institute's critical mission."
Four major research initiatives being advanced by the Life Course Outcomes Program include:
- 1. Indicators Initiative, assessing community and national indicators of services and outcomes
2. Promising Practices Initiative, examining innovative approaches to service provision and policies
3. Research Leadership Initiative, expanding the field of useful research by training additional scholars
4. Long-Term Knowledge Initiative, doing studies that discover how life unfolds over a long period of time for people on the autism spectrum and their families.
The Autism Institute leadership is actively pursuing additional partnerships for these key initiatives.
"About 500,000 adolescents on the autism spectrum will enter adulthood in the next decade," said Shattuck, an associate professor at the A.J. Drexel Autism Institute with a secondary appointment in Drexel's School of Public Health. "We believe people on the autism spectrum are valuable members of our communities. They have roles to play, dreams to achieve and contributions to make. We see an urgent need for research aimed directly at understanding what strategies, beyond clinical interventions, promote positive outcomes and prevent negative ones – both for people on the autism spectrum and the families and communities they are part of."
Shattuck joined Drexel in 2013 and is one of only a handful of scholars in the world whose work is wholly devoted to answering these kinds of questions. The A.J. Drexel Autism Institute was established in 2012 as the nation's first autism research center based on a public health science approach.
Drexel's Life Course Outcomes Program addresses questions about quality of life across the entire lifespan. Are children getting diagnosed and entering services at an early age? What's holding back more adults on the spectrum from attending college or becoming gainfully employed? What kinds of services do people receive compared to what they need? What's working and what's not?
The program's aims address the needs and challenges recognized by many adults on the autism spectrum as well as by parents of children with autism who anticipate the so-called "services cliff" that occurs when young adults on the spectrum age out of supports that are available to children and adolescents.
Sonia Voynow, a psychotherapist and parent of a teenager with ASD, who leads support groups for parents and grandparents of children on the spectrum, noted "a sense of terror" among parents such as herself when anticipating their kids' future. "We know that our children are capable of so much when they have the right supports," Voynow said. "But we don't know where to find these resources, or if they even exist, particularly as our kids reach adulthood. Drexel's Autism Institute, by using a systematic and organized approach to focus on what works for these kids, is filling a huge, and growing, need."
"No approach to autism from a public health perspective could be comprehensive without considering the experiences of individuals and communities across the entire lifespan," said Craig Newschaffer, PhD, director of the A.J. Drexel Autism Institute and a professor in Drexel's School of Public Health. "We are grateful to our anonymous donor whose generosity will help Drexel lead the way on research with a lifespan perspective. Dr. Shattuck will answer essential questions for individuals on the spectrum, their families and our communities."
As the Life Course Outcomes program grows, Shattuck and colleagues at Drexel envision – as described in a recent JAMA Pediatrics editorial – an approach that is centered on innovation and investment. Their aims include learning from innovations already underway in communities; measuring systematically and repeatedly to quantify societal impacts over time; planning large, long-term life-course studies for autism; and increasing the number of scholars pursuing this line of work.
"Ultimately, we need to know if the billions spent to move the needle on life outcomes like employment, health, community contribution, and social participation are having a measurable impact," said Shattuck. "This gift positions the A.J. Drexel Autism Institute to lead the way in figuring out how to strengthen the connection between efforts and outcomes so we know what's working for whom."