Transitioning from Pediatric to Adult Health Care is Often Difficult for Adolescents with ASD

An adolecent talking with  a doctor

A study from the Centers for Disease Control and Prevention (CDC) found that few adolescents receive the recommended guidance for transitioning from pediatric to adult health care. This can be particularly difficult for adolescents identified with Autism Spectrum Disorder (ASD) in early childhood who, compared to other adolescents, are more likely to have additional mental health or other conditions that require more services and coordination among healthcare providers, but are also less likely to receive the healthcare services they need.

Greater coordination among healthcare programsexternal icon and offering interdisciplinary training to providersexternal icon could expand access to services and increase provider comfort in treating the unique healthcare needs of adolescents with ASD and supporting healthcare planning as they transition from pediatric to adult health care.

Read the scientific summary (abstract) of the research.

Main Findings

Compared to adolescents without ASD, adolescents with ASD were

  • 90% more likely to have additional mental health or other conditions.
    • About 1 in 5 had physical difficulties, and
    • about 3 in 5 had additional mental health or other conditions, such as ADHD or anxiety.
  • More likely to receive mental health services (41.8% vs. 22.1%), but also three times more likely to have an unmet healthcare service need (11.0% vs. 3.2%).
  • Less likely to receive the recommended guidance on healthcare transition (HCT) planning from their doctors or healthcare providers.
    • Only 1 in 13 adolescents with ASD received the recommended guidance to move from pediatric to adult health care.

Health Care Transition (HCT)external icon

Recommended guidance on healthcare transition (HCT) is defined in the context of three HCT elements:

  • Time alone, without parent present, with primary care provider (PCP) at last preventive visit;
  • PCP actively worked with child to set health goals and take control of his or her own health care; and
  • Parent knows how child will be insured as he or she becomes an adult.

About This Study

  • Data in this report were collected between July 2018–December 2020 from parents/guardians of adolescents aged 12–15 years who were previously enrolled in the Study to Explore Early Development (SEED) at ages 2–5 years and initially identified as having ASD or as being general population controls.
  • Parents completed survey questions and standardized scales related to the adolescent’s daily living skills, current ASD symptom severity, overall health status, physical difficulties, gastrointestinal symptoms, sleep problems, mental health or other conditions, and use of health and mental health services in the past 12 months.
  • Parents were also asked about HCT planning in the context of the three elements included in the Health Resources and Services Administration’s Maternal and Child Health Bureau’s (HRSA MCHB) National Performance Measures.

Closing the Gaps

These steps can increase the proportion of adolescents with ASD who receive recommended transition planning:

About Autism Spectrum Disorder

In the United States, about 1 in 54 children has been identified with Autism Spectrum Disorder (ASD).1 Services and support are critical as these children grow into adolescence and adulthood. Treatment continuity is important for long-term mental and physical health. For adolescents with ASD, timely healthcare transition planning may mitigate potential problems that could be caused if healthcare is disrupted.

Our Work

Planning for Service Needs

CDC’s most recent funding cycle for the Autism and Developmental Disabilities Monitoring (ADDM) Network includes support for five sites to follow up on 16-year-olds who had been identified with ASD by 8 years of age. This is a new activity for the ADDM Network and will provide valuable information on transition planning in special education services and potential service needs after high school.

Promoting Better Outcomes

CDC’s Study to Explore Early Development (SEED) began identifying children with ASD in the mid-2000s, and these children are now beginning the transition from adolescence to adulthood. Through SEED Teen, CDC is tracking the changes that occur during this transition period to learn about factors that may promote more successful transitions and better outcomes in young adults with ASD.

For more information, visit https://www.cdc.gov/ncbddd/autism.

Key Findings Reference

Powell P, Pazol K, Wiggins L, et al. Health Status and Health Care Use Among Adolescents Identified With and Without Autism in Early Childhood — Four U.S. Sites, 2018–2020. MMWR Morb Mortal Wkly Rep 2021;70:605 – 11.

Additional References

  1. Maenner MJ, Shaw KA, Baio J, et al. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016. MMWR Surveill Summ 2020;69(No. SS-4):1–12. DOI: http://dx.doi.org/10.15585/mmwr.ss6904a1external iconexternal icon.