Date Published: August 14, 2025

This is a SPARK Research Match Summary Report. It describes results from newly published research using data from SPARK participants.

Study title

Pilot rural–urban comparison of health care experiences among autistic adolescents and young adults

What was the study about?

Autistic teenagers and young adults face challenges as they move from pediatric to adult health care. Older studies have found that rural residents with disabilities face problems such as a shortage of doctors. This study compared the health care experiences of autistic youth and young adults who live in rural areas to the experiences of young autistic people in urban (metropolitan) areas. Rural areas have less than 50,000 people, and urban areas include cities and larger towns.

How was the research done?

Researchers enrolled 180 autistic people aged 14 to 25 in the study. Almost 80 percent were members of SPARK. Participants could complete the Health Care Transition Experience Survey by themselves or with a parent. A parent could fill out the survey for them, too. The survey asked about the teens’ and young adults’ experiences of finding health care, getting appointments, and working with doctors.

What did the researchers learn?

• Study participants who live in rural areas were more likely to say that their doctors did not understand autism well, compared to participants who live in urban areas.¹
• More than half of the rural residents said that there were few healthcare providers nearby, compared to one-fourth of the urban participants.
• Participants in rural areas were more likely to work with one health care provider, while their urban counterparts often chose from different doctors.
• Dental care was a challenge for both groups. Rural youth had trouble finding a dentist who accepted their insurance, and urban youth were more likely to have no dental insurance at all.
• Participants in both rural and urban areas did not differ significantly in their ability to see a primary care doctor or nurse, dentist, and vision/hearing specialist. They also did not differ in their ratings of how well their providers listened and worked with them.
• Rural and urban participants shared some similar barriers to health care, such as finding a good provider, scheduling visits, and long waits for appointments.

What was new and innovative about the study?

This is among the first studies to look at the experiences of autistic people in rural and metropolitan areas who will be, or are, moving from pediatric to adult health care.

What do the findings mean?

Autistic teens and young adults face similar health care barriers, such as long waits for medical appointments. Study participants in rural areas had more trouble finding nearby doctors in general, and those trained in autism in particular, than urban participants. Rural residents saw doctors as often as urban participants, possibly by traveling long distances and using telehealth services. “People in rural communities are very resilient,” says the lead researcher, E (Alice) Zhang, Ph.D.

What are people saying?

Study participants:

• “I’m a nurse. So I am able to do many of the health care things for my [child]. Someone that doesn’t have a doctor or nurse in the family may face more problems.
• “This topic is a very important part of the autism world, and I felt that my/our experience and feelings about it are not with the majority of people, or at least not with the people I know personally going through the same challenges. Transitioning from pediatric to adult medical care was something I wanted for my [child] for years before it happened and was such a relief.”

Study researcher E (Alice) Zhang, Ph.D., assistant professor, University of Kansas Medical Center:

“No matter where they live, autistic adolescents and young adults experience difficulties with accessing certain health care services or navigating the health care system. Of course, we do see some differences. There are fewer providers who have autism knowledge and expertise in rural areas compared to urban areas.”

What’s next?

The researchers hope that a future study will include a larger and more diverse group of participants. Zhang’s team is working on another paper in which it analyzes interviews with rural and urban youth about health care.

She would also like to develop training materials to help youth with disabilities transition to adult health care.

References

1. Zhang E. et al. Autism Epub ahead of print (2025) PubMed

About SPARK Research Match

This SPARK Program matches participants with research studies that they may want to join. These studies have been evaluated for scientific merit and approved by a scientific committee at SPARK. The program is free to researchers and participants. SPARK does not endorse or conduct these studies. Participants choose if they want to take part in a particular study.