Karen A. Kuhlthau, Jennifer Delahaye, Marji Erickson-Warfield, Amy Shui, Morgan Crossman, Emma van der Weerd

This paper seeks to describe the experience of youth with autism spectrum disorder (ASD) in making the health care transition (HCT) to adult care. We surveyed 183 parents and guardians of youth with ASD, assessing the extent to which youth and families experienced and desired HCT services, their satisfaction with services, and obstacles to transition. Descriptive statistics were used to examine HCT measures and Fisher's exact and t tests assessed whether demographic or health measures were associated with service receipt. Any measures with a P value <.05 were included in a logistic regression model, with service receipt as the dependent variable. The receipt of transition services was low overall, with rates for individual services ranging from 3% to 33% and only 60% of the sample receiving any transition service. Despite these low rates, a majority of respondents reported wanting services (73.3%-91.6%), and satisfaction for received services was high (89%-100%). Regression analyses showed depression to be the only variable significantly associated with service receipt. Youth who were identified by their caregivers as having depression experienced a higher rate of transition service receipt than those not identified as having depression. Findings suggest that there is a great need to address the provision of HCT services for youth with ASD. Although families who received HCT services were generally satisfied, overall rates of service receipt were quite low, and those who were not provided with services generally desired them.