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 health care 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 health care 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, MD, 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.”
Sarah T. Campbell, a patient/family advocate for the initiative and the parent of an autistic adult, was brought on board to be the voice of lived experience. She created the Patient Experience Board, a virtual classroom site where group members could engage in discussions, pose questions, and share their thoughts on topics designed to inform the clinician course and website content. Campbell also identified clinicians and experts who might contribute to the Adult Autism Health Resources project.
“I reached out to organizations that could recommend people to serve on the Patient Experience Board, making sure that we were geographically and demographically diverse,” she explains. “I also collected articles and research that would help us keep up with the ever-changing understanding and perceptions of autism within society as well as the medical and autism communities.”
The Adult Autism Health Resources initiative keeps clinicians and autistic adults and their families up to date through two platforms:
Clinical Care for Autistic Adults
Clinical Care for Autistic Adults is a self-paced, online course that offers a fundamental understanding of autism spectrum disorder and best practices involved in diagnosing, treating, and coordinating adult health care. Anyone who seeks to provide quality care to this population will develop more confidence in their ability to deliver patient-centered, equitable care.
In addition, physicians, nurses, social workers, and physician assistants who complete the course will have the opportunity to earn HMS continuing education credits.
Beth Malow, MD, MS, professor of neurology and pediatrics and the director of the Sleep Disorders Division at Vanderbilt University Medical Center, is a key member of the Adult Autism Health Resources initiative.
"I’m a sleep specialist who sees children and adults on the autism spectrum,” she says. “Clinicians who want to get a better understanding of sleep problems in autistic people are an ideal audience for the Clinical Care for Autistic Adults course, and will find the materials and resources to be informative.”
Adult Autism Health Resources
The Adult Autism Health Resources patient and family website provides information and links to resources that will help autistic adults, their families, and caregivers navigate the health care system, prepare for later life transitions, communicate with providers, and meet the unique challenges of aging with autism.
"Families can use these resources to learn about areas they can advocate for and assist with, and to provide support for their autistic family member,” says Janice Jutras, special projects development editor, for the Adult Autism Health Resources website. “These supports range from collaborating with clinicians to taking ownership of crucial financial or insurance paperwork.”
"An effort was made from the start to involve autistic adults and their parents as consultants,” adds McDougle. “They reviewed the content and have input in the way it is presented.”
Explore and engage with health resources for clinicians/patients and families:
- CCAA course for clinicians: https://cmecatalog.hms.harvard.edu/clinical-care-for-autistic-adults
- AAHR website for patients and families: https://adult-autism.health.harvard.edu
- Learn more about the Nancy Lurie Marks Family Foundation: https://hms.harvard.edu/departments/giving/our-donors/nancy-lurie-marks-family-foundation