Abstract
Timely data on service use and needs across the lifespan are essential to developing an effective and efficient service delivery system that is responsive to developmental issues. This study uses data from one of the largest statewide surveys conducted between 2017 and 2018 to compare service use and unmet needs among individuals on the autism spectrum across the lifespan. A statewide sample of 5792 caregivers of autistic children and adults were included in the study. Logistic regressions were conducted to compare service use and need among six age groups ranging from early childhood (0–5 years) to later adulthood (31+) while adjusting for sociodemographic characteristics. We found that the transition-age adult group (18–21 years) was less likely to receive services, including speech/language therapy, occupational therapy, one-on-one support, and social skill training, than adolescents. However, case management and mental health services increased with age. Young adults (22–30 years) were more likely to report unmet needs than both adolescents and transition-age adult groups. The use of services overall decrease and service needs increased compared to results from an earlier statewide survey that was conducting in 2009–2010. These results can be used to inform developmentally appropriate autism-related healthcare policies and service development and delivery. This study offers a more detailed look at differences between adult age subgroups that are novel. Further research is needed about the prevalence of ASD in adulthood, clinical trajectories, and outcomes in order to support autistic adults in getting the appropriate services and supports.
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Funding
This work was supported by grant from Eagles Autism Foundation in support of the proposal Getting Out There: Identifying Individual, Environmental, and Service Use Factors Associated with Community Participation among Adults with Autism Spectrum Disorder. The Autism Services, Education, Resources, and Training Collaborative (ASERT) Collaborative Eastern Region by the Bureau of Supports for Autism and Special Populations, Pennsylvania Department of Human Services; the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under UJ2MC31073: Maternal and Child Health-Autism Transitions Research Project. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.
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All authors contributed to the study conception and design. Data collection were performed under the supervision of Lindsay Shea. Wei Song performed the statistical analyses. The first draft of the manuscript was written by Wei Song, and all authors provided critical feedback on the previous versions of the manuscript. All authors read and approved the final version for submission and publication.
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All procedures performed were in line with the principles of the Declaration of Helsinki. The study protocol was approved by the Institutional Review Board of Drexel University.
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Song, W., Salzer, M.S., Nonnemacher, S.L. et al. Lifespan service receipt and unmet needs among individuals on the autism spectrum. Adm Policy Ment Health 49, 694–705 (2022). https://doi.org/10.1007/s10488-022-01192-4
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DOI: https://doi.org/10.1007/s10488-022-01192-4