Why PATHS?

Compared to non-autistic young people, autistic youth are more likely to have co-occurring mental and physical health conditions. When these conditions are not managed well, especially during the transition from pediatric to adult health care, they may worsen over time. In addition, we still need to better understand exactly how socioeconomic status (SES), race, ethnicity, and sex affect the health of young autistic individuals. 

What will PATHS do?

Researchers will examine Medicaid health data on 1 million autistic youth and their non-autistic peers, ages 10-24 years, over a 5-year span with the goal of uncovering health and health services patterns that make a difference on long-term well-being. At each step, researchers will work to better understand how socioeconomic status, race, ethnicity, and sex make a difference in these patterns. The goal is to understand how patterns of health and health services use over time contribute to autistic young persons’ health as they get older. This new knowledge should improve our understanding of how, when, and whom we should be supporting to help autistic young people achieve better well-being.

What are PATHS' specific goals?

• To uncover different health patterns across age: Using statistical methods, researchers will identify groups of autistic and non-autistic young persons of different ages with different health patterns. Members of each group share a common pattern of mental/behavioral/neurodevelopmental (MBND; e.g., depression, sleep problems, ADHD), chronic physical (e.g., asthma, gastrointestinal problems), and acute physical (e.g., infections, injuries) health over a 5-year period. For example, one group might share frequent brain MBND health events (such as treatment for depression or ADHD) but have few chronic or acute physical health events. Another group might receive treatment for many chronic physical health conditions, such as asthma or diabetes, with relatively fewer MBND events and few acute physical health concerns.
• To uncover different health services patterns across age: Using similar methods, researchers will identify groups of autistic and non-autistic young persons of different ages with different health services patterns. Members of each group share a common pattern of services over a 5-year period. For example, one group might share a history of frequent visits to the emergency department or frequent inpatient stays but have fewer regular outpatient visits. Another group may share high medication use, with few inpatient stays or emergency visits and few outpatient visits.
• To learn how past health and services use patterns impact future health and well-being: Researchers will study how the measures of health and well-being in later years are different between autistic and non-autistic youth who had different health and health services patterns in the previous 5 years. Measures of long-term health and well-being include how long a person has had a specific disabling health condition; how frequently persons need to use inpatient or emergency care; and how often deaths occur. 

At every stage, differences will be measured and compared across persons based on their sex, socioeconomic status, and racial and ethnic identity to discover when, how, and for whom these factors make a difference in health, services use, and well-being.

How will researchers engage and collaborate with the community?

PATHS is supported by a Community Advisory Board composed of partners who share a commitment to supporting autistic youth with co-occurring health conditions. Community partners, including autistic young persons, parents, adult siblings, and healthcare providers meet quarterly to share ideas with the research team and carry out their own community activities and projects, in partnership with PHASES researchers. 

Preliminary research findings:

J.Yu, J. Ventimiglia, S. Paul, P. Smith, B. Lee, J. Rast, J. Rando, K. Lyall, L. Shea, N. Rod, P. Mullachery, D. Schendel. International Society for Autism Research 2025.

Prevalence of Mental, Behavioral, and Neurodevelopmental Disorders Among Autistic Tweens and Their Peers Enrolled in Medicaid.

Summary: We compared prevalences of certain health conditions between autistic tweens between the ages of 10 and 17 and their nonautistic peers using national Medicaid claims data, and found that prevalences of co-occurring mental, behavioral, and neurodevelopmental disorders were greater among tweens with autism than their peers without autism. Incidence rate ratios were higher for tween with autism except for substance abuse disorders, and a Poisson regression showed a greater mean of co-occurring conditions among children with autism and children with intellectual disability when compared to their peers without either condition.

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Smith, P.H., Shea, L.L., Rast, J.E., Hino, L.*, Briskey, C., Schendel, D.E. (2025). Autism and medical complexity among children in the U.S. Pediatrics, 155(3), e2024067472

Summary:  Children with medical complexity have multiple or severe chronic conditions that result in significant day-to-day disability, and much higher use of healthcare and service utilization compared to other children. Overlap between autistic children and children with medical complexity is extensive in the U.S. We found that up to 60% of autistic children also have medical complexity, and about 40% of children with medical complexity are also autistic. Children identified as both autistic and medically complex had healthcare expenditures that were significantly greater than children who belonged to only one of these two groups.

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Smith, P.H., Kim, J., Patti, M., Rast, J.E., Lyall, K., Shea., L.L., Sheridan, E., Schendel., D.E. (2025). High support need groups among autistic children and youth in the United States: Prevalence, overlap, and specific support needs. Poster presented at the International Society for Autism Research annual conference, Seattle, WA.

Summary: We examined the prevalence and overlap of four high support need groups among autistic children in the U.S.: 1) medical complexity, 2) serious mental illness, 3) significant disability from intellectual or spoken language disability, and 4) higher socioeconomic support need. Two out of every three autistic children belonged to at least one of these four groups and overlap among the groups was high. Each of these four groups was independently associated with significantly greater specific challenges and support needs, such as unmet service needs, healthcare provider challenges, bullying, and caretaker support needs. Definitions of high support needs should consider multiple sources of need and their high degree of overlap. 

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Smith, P.H., Wright, J., Ventimiglia, J., Schendel, D.E., Lee, B.K., Lyall, K., Mullachery, P., Rast, J.E., Shea, L.L. (2024). Service use and associated expenditures among adolescents with autism spectrum disorder transitioning to adulthood: 2015-2019 update. Poster presented at the International Society for Autism Research annual conference, Melbourne, Australia.

Summary: Among Medicaid enrollees between 2015-2019, autistic adolescents exhibited important patterns of changing healthcare utilization across the transition to adulthood. For example, psychiatric outpatient care utilization remained high across the transition, but became substantially more expensive. In comparison to trends seen using earlier data (2001-2005), outpatient care was generally more stable across the transition to adulthood, potentially indicating improvements in continuity of care since the earlier data were collected.