The big, flashy brain research almost always steals the show. Lately, there has been a lot of news about funders delving into the genetic roots of autism: The Simons Foundation Autism Research Initiative is banking genetic information from 2,700 families, of course. But there's also the Autism Ten Thousand Genomes Program, a project of Autism Speaks, which is gearing up to analyze more than 3,000 genomes, thanks to funding from the Gordon and Llura Gund Foundation.
As is the case with a lot of in-depth research, it may take a while for society as a whole to reap the fruits of these labors, as scientists tease out the threads of the roots of the disorder and how it impacts the brain. Meanwhile, other funders are taking a more endgame approach, tackling autism’s social and public health side.
Recently, the Nelson A. and Michele M. Carbonell Family Foundation, Inc. donated $2.5 million to fund the Inaugural Director of Autism and Neurodevelopmental Disorders (AND) Initiative at George Washington University, an interdisciplinary program designed to pioneer solutions for young people with autism making the leap into adulthood. Rather than swimming upriver to find the genetic root of autism in the hopes of pioneering new therapies that may help future autistic people function in daily life, the Carbonell Foundation is more interested in the here and now—and with good reason.
The founders have a 20-year-old son with autism; his attempts to transition from childhood to adulthood have been stymied by the lack of services available to young adults like him. “Nobody has figured out how to create a world in which these young adults can live independently, have jobs and have a real life,” says Nelson Carbonell. “There aren’t good programs, policies or strategies for adults and teens with autism transitioning to adulthood.”
Initiatives like this one, while perhaps not as flashy or as potentially game-changing as genetic research, have more immediate potential to improve lives. Even Autism Speaks, with its sizable investment in the genetic side of autism, supports public health initiatives like Early Access to Care, and the Global Autism Public Health Initiative. The best chance for future breakthroughs in the realm of autism research and funding lies in integrating the milestones reached by these different kinds of projects.