GW Research Spring 2014 Edition

For Kids With ASD, a Focus on Adulthood

Light it up Blue
GW lit its campus up with blue lights to recognize National Autism Awareness Month. (Photo: William Atkins.)

$2.5M gift will endow first director of initiative to study, navigate transition

May 01, 2014

When 2-year-old Dylan was diagnosed with autism spectrum disorder in 1996, his parents—GW Board of Trustees Chair Nelson Carbonell Jr., BS ’85, and Michele Carbonell—began a hopeful but often frustrating journey, as they grappled with the question of how they would provide their son with a healthy and meaningful life.

It is an era that they refer to as “the Dark Ages.”

Eighteen years later, the world is very different for parents of young children with autism, with more early childhood intervention programs, stronger policies, and a greater understanding of the disorder. But for young adults with autism the world remains a difficult place to navigate.

“We’re still in the Dark Ages. Nobody has figured out how to create a world in which these young adults can live independently, have jobs, and have a real life,” Mr .Carbonell says. “Now that our son is 20, we’re facing similar challenges that we faced when Dylan was 2 years old. There aren’t good programs, policies, or strategies for autistic adults and teens transitioning to adulthood.”

Compelled by this reality, the Nelson A. and Michele Carbonell Family Foundation announced in April a gift of $2.5 million, which will provide an endowment for a professor who will serve as the inaugural director of GW’s Autism and Neurodevelopmental Disorders Initiative.

“GW has done many things in this area, and we think that our gift will allow us to bring those efforts into focus to make it real and make it permanent,” Mr. Carbonell says.

The interdisciplinary initiative has 86 affiliated faculty members— from five schools around the university—who are applying a multidisciplinary approach to research, policy, and treatment for individuals with autism and neurodevelopmental disorders.

The director will tie together these moving parts, making GW an integrated resource for people with autism and their families to obtain state-of-the-art assessments, interventions, medical treatments, support services, and opportunities to participate in research and clinical trials. The initiative also will help shape policy and programs that will streamline and make affordable the necessary services for people with these disorders.

“These young adults—they are the first wave of the autism epidemic,” says Ms. Carbonell, chair of the national capital area chapter of Autism Speaks, an advocacy and science-funding organization. “We need to do better by them. And we don’t have time to waste.” —Lauren Ingeno


For more on the AND Initiative and the work of GW researchers, visit go.gwu.edu/andinitiative.