Health Care Transition Planning Among Adolescents with Autism Spectrum Disorder

Abstract

Improving the health care transition process for youth with autism spectrum disorder (ASD) is critically important. This study was designed to examine the overall national transition core outcome among youth with ASD and each of the component measures of health care transition planning. Fewer than 10% of youth with ASD meet the national transition core outcome. Among youth with ASD, there is greater disparity in health care transition planning for non-Hispanic black youth, youth with family income <400% of the federal poverty line, and youth with more severe activity limitation. Continued advocacy, research, and training efforts are needed to reduce disparities in receipt of health care transition planning services for youth with ASD.

Health Concerns and Health Service Utilization in a Population Cohort of Young Adults with Autism Spectrum Disorder

“…In a small scale Canadian study, a group of adults with ASD self-reported on their health service use over a year, with 1/3 of young adults with ASD not having a single visit with a primary care provider (Vogan et al 2016 ). Given the higher rates of mental health problems, specific impairments in communication, and stress in unfamiliar situations (like hospital or ED) in adults with ASD, there is a need to offer holistic, proactive adult based care, similar to the medical home concept for children and adolescents (Walsh et al 2017 ). The rise in prevalence of ASD in children over the last decade means that there will be even greater numbers of young adults with ASD entering the adult healthcare system in the near future, and tools are needed to help physicians and families navigate this transition so that all of them can access proactive care (McGonigle et al 2014 ).…”

Disparities in healthcare transition support received by adolescents with special healthcare needs

“…Children or adolescents with special healthcare needs ‘have or are at increased risk for chronic physical, developmental, behavioral or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally’ (McPherson et al, , p. 138). A recent study indicates that adolescents with special healthcare needs (ASHCN) regularly fall below the expectations of the national transition core outcomes for healthcare transition (Walsh, Jones, & Schonwald, ). Further, while research into general transition planning specifically for adolescents with intellectual and developmental disabilities (IDD) continues to grow (Burke, Wagner, Marolda, Quintana, & Maddux, ), research on healthcare‐specific transition planning has fallen behind (Kuhlthau et al, ; Walsh et al, ).…”

“…A recent study indicates that adolescents with special healthcare needs (ASHCN) regularly fall below the expectations of the national transition core outcomes for healthcare transition (Walsh, Jones, & Schonwald, ). Further, while research into general transition planning specifically for adolescents with intellectual and developmental disabilities (IDD) continues to grow (Burke, Wagner, Marolda, Quintana, & Maddux, ), research on healthcare‐specific transition planning has fallen behind (Kuhlthau et al, ; Walsh et al, ). Disparities also currently exist between individuals of differing race and disabilities in terms of the type of support and transitioning services they receive (Kuhlthau et al, ; Walsh et al, ).…”

“…Further, while research into general transition planning specifically for adolescents with intellectual and developmental disabilities (IDD) continues to grow (Burke, Wagner, Marolda, Quintana, & Maddux, ), research on healthcare‐specific transition planning has fallen behind (Kuhlthau et al, ; Walsh et al, ). Disparities also currently exist between individuals of differing race and disabilities in terms of the type of support and transitioning services they receive (Kuhlthau et al, ; Walsh et al, ). These results demonstrate the need to further investigate these disparities in order to raise awareness of the lack of transition support for specific populations.…”

“…While studies exist which examine transition planning for children and adolescents with special healthcare needs (e.g., Kuhlthau et al, ; Sohl, Mazurek, & Brown, ; Walsh et al, ), few consider the broad range of interactions and practices which are involved in creating a supportive healthcare environment in conjunction with transition support. For example, some studies only focus on examining the effectiveness of transition‐specific programmes (Crowley, Wolfe, Lock, & McKee, ; Singh et al, ).…”