The Feasibility of Using Electronic Health Data for Research on Small Populations. Transition to adulthood


Most research on ASDs focuses on the identification, assessment, and treatment of children. Few studies examine their transition into the adult world.128 The health care transition between adolescence and adulthood requires planning in order to maximize lifelong functioning and well-being. This process would ideally include ensuring uninterrupted, developmentally appropriate health care services as the person moves from adolescence to adulthood.129 For those with ASDs, there are a number of special considerations for this transitional period. The transition period from pediatric to adult care and from child to adult special services will have lifelong implications for their education, employment, social activities, and health.130 Because their conditions range in severity, a wide range of individualized adult services and supports is needed for this population.131

Two key aspects of transition planning for teens with ASDs are helping them take increased responsibility for their health care, and plan for the transfer of care from a pediatric to an adult provider. Unfortunately, providers who care for adults often lack training and experience in dealing with this transitioning population.132 For those whose disability is impaired enough to interfere with the ability to make financial or medical decisions, parents can file for a petition to maintain guardianship.133 Most individuals diagnosed with autism during childhood remain dependent into adulthood on their parents or caregivers for support in education, accommodation, and occupational situations.134

Teens with ASDs who are transitioning to adulthood need help in understanding their disability, opportunities to talk about topics such as safety, substance abuse and sexuality, education about how to take medications and make routine health care appointments, and continual insurance coverage. An adult provider also needs to be identified, and the adolescent’s medical records transferred.135 None of this is simple.

Unfortunately, health care transition planning is not common for youth with ASDs.136 One national survey found only 14 percent had a discussion with their pediatrician about transitioning to an adult provider, and fewer than 25 percent had discussed retaining health insurance.137 Being from a racial or ethnic minority, having low income, being from a non-English speaking family, and not having a medical home reduces the odds that youth with ASDs will receive comprehensive transition services.138 Even within medical homes, both parents and pediatricians have reported dissatisfaction with the time and resources dedicated to this transition.139

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