Celebrating 10 Years: A Special Report on the Past, Present, and Future of Research CAR
Editor's note: This is the final post in a series of blog posts published throughout the year in recognition of CAR’s 10th anniversary and our ongoing efforts to understand the causes of autism spectrum disorder (ASD) in order to develop more effective therapies, while supporting individuals and families living with ASD here and now. To go straight to our 10th Anniversary Report, click here.
Ten years ago, a neuropsychologist in New Haven and a developmental pediatrician in Philadelphia joined forces to accept one of the most rewarding challenges of their careers: to build from scratch a world-class autism research center that would be a beacon for the field.
The Center for Autism Research (CAR) was born in 2008 in response to the increasing awareness and prevalence of children being diagnosed with autism spectrum disorder (ASD) both nationally and among patients at the Children's Hospital of Philadelphia (CHOP). The CDC’s estimation of autism prevalence among children in the U.S. had climbed from 1 in 150 in 2000 to 1 in 88 by 2008. (The 2018 estimate lands at 1 in 40.) Seeing so many families struggling to make sense of this complicated diagnosis, CHOP’s leadership resolved to put the full might of its clinical and research expertise into building a world-class clinical research center dedicated to making fundamental discoveries into the developmental, neurobiological and genetic mechanisms of ASD, in order to develop effective treatments.
At the time, Robert T. Schultz, PhD, was director of the Yale Developmental Neuroimaging program at the Yale Child Study Center, where he was leading pioneering work to understand how the brain functions during social interactions, a central issue for people with ASD.
Susan Levy, MD, MPH, was founder and director of CHOP’s Regional Autism Center (now the Autism Integrated Care Program), providing comprehensive, coordinated, family-centered care for young children suspected of having an autism spectrum disorder.
Schultz recalls fondly the phone call with Dr. Levy that “sealed the deal” on their new endeavor, saying “I leapt at the chance to build something very special and never looked back.”
At the beginning, CAR was almost exclusively focused on basic research, making fundamental discoveries regarding the genetics of ASD and differences in brain structure and function. Many of these early discoveries didn’t have immediate implications for the families being seen in CHOP’s clinic. With each passing year, the research-to-clinic relationship has become stronger and increasingly seamless, as CAR discoveries began to inform clinical guidance for patients at CHOP and elsewhere. Today, our clinical partnerships extend throughout CHOP, as CAR joins with the departments of Developmental and Behavioral Pediatrics, Neurology, and Psychiatry to launch the nation’s first autism-specific Learning Health System. This integrated model of research and clinical care gives CAR the opportunity to focus the greatest percentage of its current efforts on research which will directly impact the lives of individuals with autism right now.
“I see a complete difference in how I’m better able to help families affected by autism versus when we were just starting on this,” says Dr. Levy. “My hope is that we continue to progress so children can develop the best they can.”
CAR quickly developed formal relationships with researchers at the University of Pennsylvania, including David Mandell, ScD, and Ted Brodkin, MD, This established a rich long-term collaboration which produced important research delving into school-based interventions, policy, and outcomes and interventions for adults with ASD.
In addition to its research into the causes of ASD and the development of effective interventions, CAR’s mission includes Outreach and Training as the two other pillars of its three-part mission. With a full-time outreach staff that includes a social worker and communications team, CAR provides one-on-one consultation, group and online education, and resources for individuals and families navigating an autism diagnosis, as well as for professionals supporting those families.
CAR has also become one the country’s most sought after training sites for aspiring clinicians and researchers under the direction of the center’s clinical training director, Judi Miller, PhD. Since 2008, CAR has provided academic training for more than 200 post-graduate, graduate, and post-baccalaureate researchers who went on to enter the field as specialists. CAR graduates about 10 new clinical specialists per year, spanning all disciplines and fulfilling a vital need in communities nationwide.
We encourage you to peruse CAR’s 10th Anniversary Report to learn about the projects that most excite our team as we move into our second decade. We are developing new technologies with the potential to revolutionize research and clinical care. We are poised to revolutionize research and clinical care through the development of new technologies. With the creation of our Technology and Innovation lab, CAR now leads the field in using sensor-based technology and artificial intelligence to measure clinical profiles in youth and adults with autism. Learn about how we are partnering with the Philadelphia Police Department on a new study using virtual reality to train teens and young adults how to interact with police. We also have new grants focused early detection of autism in the first year of life using medical technology, and we are contributing to a multi-site research network that is conducting the largest autism genetics study ever undertaken. Simultaneously, we are establishing a biorepository for neurodevelopmental disorders here at CHOP.
We are incredibly grateful for each family who has volunteered to participate in our research, for our brilliant and thoughtful team of colleagues across the hospital (and across the world), and for a supportive research environment that is fertile ground for innovation. Collaboration is the only way forward, and we are excited to have you as partners as we step closer than ever toward our ultimate goal of Improving clinical care for individuals with autism.
Read the other posts in the 10th Anniversary series: