Principal Investigator: Lindsay Shea (PI)

Co Investigator: Laura Klinger (Co-I)

Co Investigator: Gregory Wallace (Co-I)

Project Summary

The Advancing the System of Care for Autistic Older Adults (ASC) study explores how health and mental health conditions emerge and change for autistic adults as they grow older. The study uses Medicaid and Medicare records from hundreds of thousands of adults over age 40 to identify patterns in diagnoses, service use, and health outcomes. To complement what is learned from healthcare data, surveys from autistic adults and caregivers will provide additional insight into needs and experiences. Interviews will also be conducted to better understand real-world service use, barriers to care, and unmet needs. This is the first large-scale study focused on autistic adults in midlife and older age, with the goal of improving healthcare systems and supports for this growing population. This study also includes an administrative supplement that aims to advance the health of autistic adults and adults with Down syndrome by looking at the rates and age of onset of two conditions that commonly co-occur among individuals with these conditions (epilepsy and Alzheimer’s disease and related dementias (ADRD).

Meet the research team working on ASC:

Lindsay Shea (PI)

Laura Klinger (Co-I)

Gregory Wallace (Co-I)

Teal Benevides

Shelby Frisbie

Claire Brito Klein

Elena Lamarche

Nancy Raitano Lee (DS Supplement)

Kiley Mclean (no longer at AJDAI)

Jessica Rast (no longer at AJDAI)

Jamie Reese

Anne Roux

Sha Tao

Samuelle Voltaire

Jonas Ventimiglia

Joe Wright

Preliminary research findings:

1. Mental Health and Service Use in Autistic Adults

McLean, K.J., Ventimiglia, J., Wright, J., Klein, C.B., Voltaire, S., Wallace, G.L., Benevides, T.W., Klinger L.G., & Shea, L. (2025, April). Mental Health Disparities and Service Utilization Patterns in Medicaid-Enrolled Autistic Adults: A National Analysis. Poster presented at the Gatlinburg Conference, San Diego, California.

This study looked at how often autistic adults use mental health services compared to other groups. It found that autistic adults were the most likely to get mental health care, especially as they got older. The study shows we need more mental health providers who understand autism.

2. Mental Health Diagnoses in Autistic Adults, Including PTSD

McLean, K.J., Ventimiglia, J., Wright, J., Klein, C.B., Voltaire, S., Wallace, G.L., Benevides, T.W., Klinger L.G., & Shea, L. (2025, May). Mental health challenges, including PTSD, in Medicaid-enrolled autistic adults: Insights from national claims data. Poster presented the International Society for Autism Research (INSAR) Annual Meeting, Seattle, Washington.

This study looked at mental health conditions like anxiety, depression, and PTSD in autistic adults. It found that many autistic adults use mental health services, but PTSD may be missed in people with intellectual disabilities. The results show the importance of better mental health care for autistic adults.

3. Insurance Coverage for Hospital and Emergency Visits in Autistic Adults

Voltaire, S., Shea, L.L., Rast, J., Tao, S., Ventimiglia, J., Klinger, L.G., and Wallace, G.L., That’ll need stitches: Establishing health insurance access among older autistic adults by using multiple data sources. Poster presented at the 2023 American Public Health Association Annual Meeting, Boston, MA.

This study looked at which types of insurance pay for hospital stays and emergency visits for autistic adults over age 40. Medicare was the most common insurance, even for adults younger than 65, and Medicaid was more common among Black and Hispanic autistic adults. These findings show a need to better understand how autistic adults get insurance and why coverage may differ by race and age.

4. Parkinson’s Disease in Autistic Adults

Wallace, G.L., Klein, C.B., Carey, M.E., Tao, S., Klinger, L.G., & Shea, L. (2024, May). Prevalence and incidence rates of Parkinson’s Disorder-related conditions among older adults. Panel presentation at the International Society for Autism Research (INSAR) Annual Meeting, Melbourne, Australia.

This study looked at how often Parkinson’s disease happens in older adults with autism or intellectual disability. It found much higher rates than in the general population, especially in autistic adults without intellectual disability. The results show the need for more research and better care for autistic adults as they age.

5. Menopause and Co-occurring Health Conditions in Autistic Women

Benevides, T. W., Cook, B., Klinger, L. G., McLean, K. J., Wallace, G. L., Carey, M. E., Lee, W. L., Ventimiglia, J., Schiff, L. D., & Shea, L. (2024). Brief Report: Under-Identification of Symptomatic Menopause in Publicly-Insured Autistic People. Journal of autism and developmental disorders, 10.1007/s10803-024-06516-x.  https://doi.org/10.1007/s10803-024-06516-x.

This study looked at menopause symptoms in autistic women ages 35–70 who use public health insurance. Only 4% had menopause listed in their records, and those with symptoms often had other conditions like anxiety, depression, or sleep problems. More support is needed to help autistic women talk about menopause with doctors.

6. Epilepsy and Dementia in Adults with Developmental Disabilities

Lee, N.R., Wallace, G.L., Tao, S., & Shea, L. (2024, May). Prevalence Rates of Epilepsy and Dementia Among Older Adults with Intellectual and Developmental Disabilities including Autism. Poster presentation at the International Society for Autism Research (INSAR) Annual Meeting, Melbourne, Australia.

This study looked at how common epilepsy and dementia are in older adults with developmental disabilities. It found high rates across all groups, especially for autistic adults with intellectual disability (for epilepsy) and for adults with Down syndrome (for dementia). These results highlight the need for healthcare systems to better support aging adults with developmental disabilities.