Adults with autism spectrum disorder (ASD) and other neurodevelopmental disorders (NDDs) often lose access to specialized care once they age out of pediatric services. A new report from the University of Maryland School of Medicine (UMSOM) faculty presents five years of real-world data from their clinical practice at the Clinical Center for Adults with Neurodevelopmental Disorders (CCAND), demonstrating how a state-funded, multidisciplinary care model can close these gaps and serve as a blueprint for other states.
The findings were recently published in the journal Neurology .
"We felt it was vital to provide a practical roadmap based on five years of hands-on experience," said study corresponding author Peter B. Crino, MD, PhD, Professor and Chair of Neurology at UMSOM and Director of CCAND. "Our data show that with modest state investment, we can deliver comprehensive care that dramatically improves health outcomes and quality of life for adults who have historically been overlooked."
Nearly six years ago, UMSOM and the University of Maryland Medical Center launched the first-of-a-kind center in Maryland to treat adults with neurodevelopmental disabilities, such as autism and intellectual disability. More than 5 million adults in the U.S. have autism, and about one-third of them have severe developmental disabilities that require intensive medical and nursing care. Adults with neurodevelopmental disorders are living longer and facing complex health challenges, including epilepsy, behavioral issues, and age-related conditions.
Most states, however, lack dedicated programs for these individuals once they leave pediatric care. Without coordinated services, families struggle to manage medical needs, behavioral crises, and social support.
"Continuity of care shouldn't end at age 18," said study lead author Pamela Sylvia Cole, LCGC, MS, genetics counselor at UMSOM. "Our center shows that a coordinated team—including neurologists, psychiatrists, genetic counselors, and social workers—can make a life-changing difference."
The CCAND evaluated 305 adults with neurodevelopmental disorders over the past five years. Patients were seen at both the University of Maryland Medical Center and at the University of Maryland Rehabilitation Institute, which is part of the University of Maryland Medical System. More than 90 percent of these patients came in for repeated visits. The research paper found that 62 percent of patients who came in for evaluations had epilepsy and that nine individuals were diagnosed with seizures for the first time during their visit. The team also found that 71 percent of patients had never undergone genetic testing and that nearly 20 percent of those tested received a new genetic diagnosis. A genetic diagnosis enabled tailored medical management and informed family counseling for these patients.
Many of these patients had tuberous sclerosis complex (TSC) which is among the most common genetic disorders linked to autism. About 1 in 6,000 to 1 in 10,000 babies are born each year with TSC, which is strongly associated with epilepsy. Individuals affected by TSC can have delayed development of speech and language by age two. About 50 percent of affected individuals will have mild to moderate intellectual disability, and they may also have anxiety and attention deficit disorder. More than 80 percent of TSC individuals will have seizures.
The study team found that aggressive behaviors and mental health challenges were common in their adult patients, requiring both medication and behavioral therapy. They also found that social work services helped families access disability benefits, housing, 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 study co-author Jennifer Hopp, MD, Professor of Neurology and Director of the Epilepsy Division at UMSOM. "This is a model that could be replicated nationwide."
The CCAND model relies on state funding because professional billing alone cannot cover the salaries of essential staff.
"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 , who is the 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."
