Adults with autism spectrum disorder (ASD) and other neurodevelopmental disorders (NDDs) often lose access to specialized care after they transition out of pediatric services. The University of Maryland School of Medicine (UMSOM) has released a report detailing five years of data from its Clinical Center for Adults with Neurodevelopmental Disorders (CCAND), which is supported by state funding. The findings, published in the journal Neurology, suggest that a multidisciplinary approach can address gaps in care and serve as a model for other states.
The CCAND was established nearly six years ago by UMSOM and the University of Maryland Medical Center. It was the first center in Maryland dedicated to treating adults with neurodevelopmental disabilities, including autism and intellectual disability. According to UMSOM, more than 5 million adults in the United States have autism, and about one-third require intensive medical and nursing support due to severe developmental disabilities.
Most states do not offer dedicated programs for these individuals once they leave pediatric care. Without coordinated services, families often struggle to manage complex medical needs, behavioral issues, and social support requirements.
"Continuity of care shouldn't end at age 18," said Pamela Sylvia Cole, LCGC, MS, genetics counselor at UMSOM and lead author of the study. "Our center shows that a coordinated team-including neurologists, psychiatrists, genetic counselors, and social workers-can make a life-changing difference."
Over five years, CCAND evaluated 305 adults with neurodevelopmental disorders at both the University of Maryland Medical Center and the University of Maryland Rehabilitation Institute. More than 90 percent returned for repeated visits. The study found that 62 percent had epilepsy; nine patients were diagnosed with seizures for the first time during their visit. Additionally, 71 percent had never undergone genetic testing before visiting CCAND; nearly 20 percent who received testing got a new genetic diagnosis. These diagnoses allowed for tailored medical management and better family counseling.
Many patients seen at CCAND had tuberous sclerosis complex (TSC), one of the most common genetic disorders linked to autism. TSC is associated with epilepsy and developmental delays in speech or language by age two; about half will have mild to moderate intellectual disability along with anxiety or attention deficit disorder. More than 80 percent experience seizures.
Aggressive behaviors and mental health challenges were frequent among adult patients studied at CCAND; both medication management and behavioral therapy were used as interventions. Social work services also played an important role in helping families access disability benefits, housing assistance, and vocational programs.
"Adults with autism and intellectual disabilities face complex medical and behavioral challenges, and our paper demonstrates that a modest state investment can create a sustainable, multidisciplinary program that improves health outcomes, reduces emergency visits, and enhances quality of life," said Jennifer Hopp, MD, Professor of Neurology and Director of the Epilepsy Division at UMSOM. "This is a model that could be replicated nationwide."
The center’s operation depends on state funding because professional billing does not cover essential staff salaries.
"We are grateful that the State of Maryland allocates $500,000 annually to treat adults with neurodevelopmental disabilities," said UMSOM Dean Mark T. Gladwin, MD—John Z. and Akiko K. Bowers Distinguished Professor and Vice President for Medical Affairs at University of Maryland, Baltimore. "It is critical that policy makers and legislators nationwide ensure that no individual is left behind simply because they age out of pediatric services."
