Transition to adulthood grant supports findings on better healthcare programs for teens and adults on the spectrum

Recent studies funded by Autism Speaks suggest that patient-centered medical homes are a promising solution to improving healthcare quality and continuity for autistic people transitioning to adulthood.

Brittany Hand, Ph.D., and colleagues at the Ohio State University recently published two studies around the university’s Center for Autism Services and Transition (CAST), a patient-centered medical home program for transition-aged autistic adults. This type of program includes patients and families as critical parts of the care team, with a primary care provider who coordinates a patient’s care with other specialists and ensures that they’re receiving the care they need, when they need it.

Hand, who was awarded $360,000 in funding from Autism Speaks in 2019, looked at different measures of success for this type of support program. The transition-specific grant funding for this work is part of Autism Speaks’ commitment to improving the transition to adulthood for people with autism and ensuring they have access to needed services and appropriate care throughout the life span.

“With an estimated 70,000 teens aging out of pediatric and school-based settings each year, we need solutions today that can serve as a model for effective patient-centered care in autistic adults,” said Thomas W. Frazier, chief science officer at Autism Speaks. “Transition research is a critical priority for Autism Speaks as one of our primary mission objectives, and Dr. Hand’s work will help other providers understand the services that improve care for autistic adults.”

Compared to the general population, autistic adults are more likely to have other physical or mental health conditions. Despite the greater need for care, they often encounter barriers when moving from pediatric providers to adult healthcare providers, like lack of autism knowledge and lack of supportive and accessible facilities. Dr. Hand’s team aims to understand what can help overcome these barriers and improve patients’ satisfaction with their healthcare.

In the first study, Hand and her team surveyed 47 autistic adults who receive care through CAST and similar programs, as well as 66 caregivers. They found that the autistic adults in this study reported significantly higher levels of satisfaction with their care and fewer unmet health needs, when compared to data from autistic adults not in patient-centered medical homes.

Adults in these programs also had more preventive care, which is critical to reducing risks for other chronic health conditions as well as the cost of care. Meeting the diverse, personal healthcare needs of autistic adults is important to creating a world in which all people with autism can reach their full potential. 

Continuity of care, which means how much of a patient’s care is provided by a single clinician, is very strongly linked to better health outcomes. Autistic people are more likely to experience poor continuity of care during and after transition from pediatric to adult healthcare providers.

In a second study, Hand compared the continuity of primary healthcare among patients at CAST to that of autistic adults generally. This study found that the continuity of primary care among CAST patients was significantly better, regardless of whether they had private or public insurance.

Continuous care from the same provider ensures healthcare needs are being met for transition-age youth. Experts recommended healthcare transitioning planning to start as early as 12-14 years old. Planning ahead helps families find an adult health provider who meets their needs and work with their pediatric provider to appropriate hand off their medical history and healthcare services.  

Developing better systems of care

Success in providing better healthcare to autistic adults can be measured in many ways. In this case, the CAST model and similar support programs increase both patient satisfaction as well as health outcomes through continuity of care. The researchers also suggest other ways to improve the system by studying patient-provider communication, addressing mental health needs, and addressing sexual healthcare.

“Dr. Hand’s findings support a specialized, patient-centered, primary care model as a promising solution to meeting the healthcare needs of autistic adults,” Frazier said.

Find more info about our research support for Transition to Adulthood here.