August 19, 2020

Autism is a neurodevelopmental condition that affects 1 in 54 children, according to the Centers for Disease Control and Prevention. As autistic children age into adulthood, health-related behaviors that may develop in childhood can have long-term consequences. Diet and exercise can impact cardiovascular risk, particularly in families with a history of hypertension, diabetes or cardiac complications. Autistic children and adults often do not get the recommended preventive services, such as immunizations or lab tests for cholesterol and diabetes. Autistic adults often do not get screened appropriately for cancer.

These and other health issues are the focus of an Autism Intervention Research Network for Physical Health (AIR-P), a $15 million investment by the federal Maternal and Child Health Bureau recently granted to researchers at the University of California, Los Angeles (UCLA) and partners at Kaiser Permanente, the AJ Drexel Autism Institute at Drexel University and the Association of University Centers on Disabilities (AUCD). Research will focus on Health Services, Primary Care/Prevention, Well-Being, Neurology, Genetics, Sexual Health, and Health Care Transitions.

"Addressing the physical health of autistic individuals across the lifespan is essential to ensuring they are on a trajectory for a healthy and fulfilling life," says Alice Kuo, MD, PhD, Principal Investigator of AIR-P and Chief of Internal Medicine-Pediatrics at UCLA.

"Sexual health and related issues have been vastly understudied in autistic populations," says Lisa Croen, PhD, Senior Research Scientist at Kaiser Permanente and Director of the Autism Research Program. "Sexual education, women's health, pregnancy and LGBTQIA issues are all relevant to autistic individuals."

Fifteen Coordinating Research Entities (CREs) have already signed on to the AIR-P network, with more to follow. These fifteen include the following AUCD network members: Center for Human Development (Alaska), Sonoran UCEDD (Arizona), JFK Partners (Colorado), Rose F. Kennedy Center (New York), Indiana Institute on Disability and Community (Indiana), Kansas University Center on Developmental Disabilities (Kansas), Kennedy Krieger Institute (Maryland), Mailman Center for Child Development (Florida), Institute on Community Integration (Minnesota), The Boggs Center on Developmental Disabilities (New Jersey), Boling Center for Developmental Disabilities (Tennessee), UC Davis MIND Institute (California), Institute on Disability and Human Development (Illinois), Carolina Institute for Developmental Disabilities (North Carolina) and Center on Human Development and Disability (Washington).

"The research will address issues that are meaningful to the disability community," says John Tschida, MPP, Acting Executive Director at AUCD. "Having persons with lived experience involved in the network is crucial to keeping us on track with what is important to autistic individuals and their families."

"Autistic individuals should be part of the process to decide which studies are important to their community," says Emily Hotez, PhD, Project Scientist and a sibling of an autistic young man. "We believe we are the first national research network to include autistic individuals in a meaningful way, as decision-making partners."

"We recognize that autism is a spectrum, and that some autistic individuals will continue to experience significant challenges throughout their lives," says Kuo. "However, as autistic children become autistic adults, many of their challenges become more similar to those that neurotypical adults face-how can we eat better, exercise more, sleep better, have fulfilling relationships. The exciting part of this research to me is knowing that the interventions that we will develop can potentially help everyone."

For more information about the new AIR-P network at UCLA, please email [email protected].