When autistic children transition into early adulthood, they lose access to many of the services and benefits provided by pediatric practices. From the age of 18 onward, these individuals and their families must navigate a healthcare system that is not fully prepared to serve their unique needs — and even less equipped to address the challenges of aging autistic adults.
According to the Centers for Disease Control and Prevention, an estimated 1 out of 45 adults in the U.S. — or about 5.4 million people aged 18 or older — has autism spectrum disorder (ASD). This data was released in the first CDC study on adults living with ASD.
Today, there is a tremendous need for competent, coordinated care across medical specialties and lifespan transitions. The lack of specialists and training in this area impacts not only autistic adults and their families, but also the physicians and care providers on whom they depend.
The Adult Autism Health Resources initiative
Thanks to the generous financial support of the Nancy Lurie Marks Family Foundation (NLMFF), Harvard Medical School has launched the Adult Autism Health Resources initiative. Focused on improving autism care and the lives of autistic adults and their families, the project aims to educate clinicians, caregivers, and self-advocates in leading meaningful change across healthcare systems.
While most people are aware of the increasing number of autistic children, they may not understand how many autistic people there are in the current adult population. Christopher McDougle, the Nancy Lurie Marks Professor in the Field of Autism at Harvard Medical School, faculty director of the Adult Autism Health Resources initiative, and director of the Lurie Center for Autism at Massachusetts General Hospital explains that “autistic individuals may live as long as the rest of us but once they graduate high school they no longer qualify for many services or receive guidance about ongoing medical care. This initiative is a way to acknowledge the existing population of autistic adults and to inform the world that they need access to quality medical care in the same way that neurotypical individuals do. It’s a wakeup call.”
David H. Roberts, dean for External Education at Harvard Medical School, believes the initiative will have a broad-reaching global impact. “We have a special opportunity to leverage the convening power of Harvard Medical School and bring the best of the HMS community to the world — from patients, families, and caregivers to clinicians, scientists, and hospital administrators.”