Health Care Transition Planning Among Youth with ASD and Other Mental, Behavioral, and Developmental Disorders

Matern Child Health J. 2020 Jun;24(6):796-804. doi: 10.1007/s10995-019-02858-6.


Objective: To estimate the prevalence of health care transition components among youth with autism spectrum disorder (ASD) aged 12-17 using the 2016 National Survey of Children's Health (NSCH), compared to youth with other mental, behavioral, or developmental disorders (MBDDs) or youth without MBDDs.

Methods: The 2016 NSCH is a nationally and state representative survey that explores issues of health and well-being among children ages 0-17. Within the NSCH, parents of a subset of youth, ages 12-17, are asked a series of questions about their youth's eventual transition into the adult health care system. The current study explores components of this transition, comparing youth diagnosed with ASD, youth with other mental, behavioral, or developmental disorders (MBDDs), and youth without MBDDs.

Results: Approximately 1-in-4 youth with ASD had actively worked with their doctor to understand future changes to their health care, significantly less than youth with other MBDDs and youth without MBDDs. Fewer than 2-in-5 youth with ASD had met with their doctor privately or had a parent who knew how their youth would be insured when they reached adulthood.

Conclusions: The current analysis of a nationally representative sample of youth reveals discrepancies in the proportion of youth with ASD receiving appropriate health care transition planning compared to youth with other MBDDs and youth without MBDDs. These findings suggest the potential for barriers among youth with ASD to effectively transitioning into the adult health care system.

Keywords: Autism spectrum disorder; Health care; NSCH; Transition.

Publication types

  • Comparative Study

MeSH terms

  • Adolescent
  • Autism Spectrum Disorder / psychology*
  • Autism Spectrum Disorder / therapy
  • Child
  • Child Behavior Disorders / psychology*
  • Child Behavior Disorders / therapy
  • Child Health
  • Developmental Disabilities / psychology*
  • Developmental Disabilities / therapy
  • Female
  • Humans
  • Male
  • Physician-Patient Relations*
  • Surveys and Questionnaires
  • Transition to Adult Care / statistics & numerical data*
  • United States