In The Politics of Autism, I write:
Many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs. Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.
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.”
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.
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.”