Access to and Need for Transition Services among Youth with Autism Spectrum Disorder

Healthcare transition services (HTS) for youth with special healthcare needs are associated with positive health outcomes and reduced gaps in insurance coverage, delayed care and parental stress. Little is known about the provision of these services in youth with Autism Spectrum Disorder (YASD). Thus, we examined accessibility and need for HTS among youth enrolled in the Interactive Autism Network (IAN) online registry.

Questionnaires were sent to a subsample of families enrolled in IAN, with 118 eligible respondents (12-18 years of age). Pearson Correlation and ANOVA were used to determine characteristics associated with accessibility and need for HTS.

Fewer than 15% of YASD reported receiving adequate HTS (having one of three transition discussions and one encouraging responsibility). Analysis of discussion questions found 14.6% discussed transitioning to an adult provider, 17.7% discussed adult healthcare needs, and 19.5% discussed insurance continuation. Only 30.1% had regular discussions with a healthcare provider about youth responsibility. Over 50% of YASD reported not needing one of the discussions and 10.5% did not need any. Those reporting not needing HTS were associated with decreased age (r =-.195, p<.05), decreased need for additional income for youth's care (r=-.181, p<.05), and increased household income (r =.201, p<.05), physical health (r =-.177, p<.05), and medical home components received (r =.261, p<.05).

Although few YASD received adequate HTS many reported not needing part or all of the components that make-up HTS. Understanding how parents assess need is important in developing educational tools, distributing limited resources and operationalizing key concepts such as HTS.