UCLA's new collaborative research effort aims to support adolescents, young adults with autism

UCLA, renowned for its leadership in research and treatment for individuals with autism, is launching a first-of-its-kind collaborative research effort to address the health, family and social needs of adolescents and young adults with autism, a group typically overlooked by health care and social services systems.

With a $900,000 award from the federal Maternal and Child Health Bureau, the UCLA Center for Healthier Children, Families and Communities has established a national Health Care Transitions Research Network for individuals with autism spectrum disorder (ASD).

"This new award expands upon the center's life-course approach to understanding how the needs of individuals with health conditions like autism change, develop and evolve across the life span," said Dr. Neal Halfon, professor of pediatrics, public health and public policy and director of the UCLA Center for Healthier Children, Families and Communities. "Given the prevalence of autism and the burden on families, we are excited to be partnering with the Maternal and Child Health Bureau to shine a brighter research light on this important area."

ASD is a developmental disability characterized by significant social, communication and behavioral challenges. The Centers for Disease Control and Prevention estimates that 1 in 68 people suffers from the disorder, which can be difficult to diagnose and has no known cause or cure. Signs of ASD begin during early childhood and typically last throughout a person's life.

"When children with autism "age out" of services provided by schools and other pediatric programs, there are virtually no programs to support their transition to adulthood," said Dr. Alice Kuo, associate director of the UCLA Center for Healthier Children, Families and Communities and associate professor of internal medicine and pediatrics at the David Geffen School of Medicine at UCLA. "The Health Care Transitions Research Network will enable a cohesive group of researchers to examine the issues facing adolescents with ASD as they move from pediatrics to adult health systems and to translate new research in this area into clinical practice, community programs and public policy."

The overall mission of the ASD Health Care Transitions Research Network is to create an interdisciplinary, multi-center research forum for scientific collaboration, focusing on research designed to improve health care and life skills transitions among youth and young adults with ASD. Taking a holistic approach, the network will conduct specific research that strives to optimize physical, psychosocial, educational and vocational outcomes for adolescents and young adults with ASD.

Co-investigators in this effort include Elizabeth Laugeson, assistant clinical professor of psychiatry, and the founder and director of the PEERS social skills program at the UCLA Semel Institute for Neuroscience and Human Behavior, one of the few evidence-based programs for youth and young adults with ASD; Lisa Goring, vice president of the national advocacy organization Autism Speaks; Dr. John Constantino, professor of psychiatry and pediatrics at Washington University; and Dr. Paul Shattuck, director of the Life Course Outcomes Program at the A.J. Drexel Autism Institute at Drexel University.

Kuo, who also directs the UCLA Medicine-Pediatrics Comprehensive Care Center in Santa Monica, a practice whose physicians have additional training in caring for patients of all ages with special needs, sees many young adults with ASD.

"Their parents are scrambling to figure out how to meet their child's needs as they transition to adulthood. Getting appropriate care should not require a trial by fire," she explained. "This network will help give these families the support they need."