Autistic people often have complex healthcare needs that increase their risk of poorer health outcomes. For the roughly one-quarter to one-third of transition-age autistic youth who are minimally verbal and who are living in a low-income household, the transition from pediatric to adult healthcare is often tumultuous.
In order to improve that transition, a one-year study funded by OAR in 2018, “Care-coordination Factors Affecting Post-secondary Outcomes for Minimally Verbal Young Adults with Autism,” examined the communication and care coordination challenges to healthcare transition for minimally verbal autistic youth. The goal was to gather information that healthcare practitioners can use to improve transition services for this particularly vulnerable population.
Led by Elizabeth McGhee Hassrick, Ph.D., an assistant professor with the Life Course Outcomes Research Program at the A. J. Drexel Autism Institute, the objectives of the study were to:
- Understand the specific challenges experienced by minimally verbal autistic youth, their parents/legal guardians, and healthcare and other service providers during the transition from pediatric to adult healthcare and adult-oriented systems.
- Identify strategies, potential areas for intervention, and guidelines for practice to improve transition services.
The multi-method study consisted of:
- Interviews with stakeholders including healthcare and service providers, caregivers, and minimally verbal youth, age 12 and older.
- Social network surveys (identifying relational ties among individuals, groups, and organizations) to analyze care coordination efforts among healthcare and service providers, caregivers, and minimally verbal youth to investigate their transition support networks.
Dr. Hassrick and her research team worked with the Center for Children and Youth with Special Healthcare Needs at St. Christopher’s Hospital for Children in Philadelphia, recruiting study participants, including patients, caregivers, and healthcare and service providers from the Center. The Center regularly provides patients and families with adult transition services.
The team conducted 22 in-person interviews – five with minimally verbal youth; seven with caregivers; five with siblings; and five with care providers as well as with key information experts. The interviews with autistic youth were conducted in person or via a text-based medium. The researchers also used a picture exchange communication system survey to ask about the people they see at the hospital and in the community, and what resources these people provide to them.
Parents/guardians worked with the research team to create lists of people who helped patients transition from pediatric to adult healthcare and a member of the hospital staff created a list of community providers that helped each participant. Those caregivers and hospital providers also answered a social network survey, which provided quantitative data about the social networks of the autistic youth participants during healthcare transitions.
In addition, the research team observed interactions among St. Christopher staff, caregivers, and youth at the St. Christopher Special Needs Clinic and off site.
Dr. Hassrick and her team noted several important findings in their final report:
- Continuity of care: Rather than handing off patient care from one provider to another, the clinic used a comprehensive services approach to transition their patients, with hospital and non-medical providers together enacting hybrid support roles. A key coordinator ensured cohesion for the patients and their parents/guardians.
- Transition experience: The parents and guardians who were interviewed described the transition experiences as a “fragmented jumble.” They were unsure of the tasks and providers included in the medical transition and which were for employment transition. From their perspective, the transitions were intertwined. They saw all of their transition providers as a patchwork put together across agencies, schools, and medical and therapy service providers.
- Medical transition networks: The networks were much larger than the research team anticipated. However, they found that they were smaller and less durable for low-resource youth.
- Group regulation: Because the minimally verbal young people who participated had trouble regulating themselves, parents/guardians, siblings, healthcare providers, and school staff stepped in to coordinate regulation activities, within each context and between contexts. It was useful to have sensory rooms at places like a hospital, which St. Christopher does provide. Group regulation was challenging from the caregivers’ perspective when different people used different regulation methods.
- Regulation advocacy: The young people let caregivers and providers know what they needed in terms of regulation at home, school, and the clinic.
- Parents/guardians as medical/behavioral caregivers: Using expertise they had gained because of their child’s autism, parents provided intensive in-home behavioral and medical care.
- Supports and barriers described by healthcare professionals: The three most beneficial supports noted by practitioners were:
- The ability to have individualized relationships with minimally verbal autistic youth and their families, enabling them to build trust.
- Interdisciplinary services, including those generally not found at a hospital because it gave practitioners and service providers the ability to work as a team.
- Reciprocal, honest, timely, culturally sensitive communication between healthcare practitioners and caregivers.
- Insufficient resources in the adult healthcare system to care for autistic adults.
- The complicated care that is often required for minimally verbal autistic youth.
- Short-term vs. long-term planning: Caregivers found it challenging to deal with immediate problems and issues while also trying to plan for their child’s transition to independence. Many elements played into that challenge, including training received by the caregivers, family system dynamics, fragmented services, and supports available through the clinic.
The next steps Dr. Hassrick envisions for this research include expanding the scope to include healthcare practices that use different models. The services that are currently in place for minimally verbal youth on the autism spectrum do not meet their healthcare needs and this problem will only increase without intervention. Her ultimate goal is to see improved healthcare transitions for minimally verbal autistic youth to reduce the considerable challenges they and their caregivers face.
Sherri Alms is the freelance editor of The OARacle, a role she took on in 2007. She has been a freelance writer and editor for more than 20 years.