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Youth with Autism Coming of Age: New NIMH Study Will Focus on Transitions in Service Use and Coverage

Science Update

youth looking out of a window

The transition from teen to young adult involves many highly anticipated rites of passage. However, for youths with developmental disorders, coming of age may signal the sudden end of coverage for education and training programs, health insurance, and youth-oriented services. For teens with autism spectrum disorders (ASD) and their families, this transition may be especially difficult. To better understand this issue and how best to address it, NIMH has awarded a five-year grant to Paul T. Shattuck, Ph.D., of the George Warren Brown School of Social Work at Washington University in St. Louis.

With this grant, Dr. Shattuck and his colleagues will pursue a study of socioeconomically and racially diverse adolescents and adults with ASD. The researchers will assess data gathered on 922 people with ASD who participated in the U.S. Department of Education's (ED) National Longitudinal Transition Study 2. The 10-year ED study included a nationally representative study population of nearly 12,000 youth, ages 13-17 at the start of the study in 2000. In particular, the Shattuck study will focus on:

  • Outlining changes in service needs, service use, and health insurance coverage as youths with ASD enter adulthood
  • Identifying resources and barriers associated with use of, and continuity in, health care and other services
  • Detailing young adult outcomes (such as employment, housing, independent living, health, and community participation) and examining how these may be linked with prior measures of need, service use, resources, and barriers.

The study also meets a research objective in the Interagency Autism Coordinating Committee's (IACC) Strategic Plan for Autism Spectrum Disorder Research  "to support at least two studies [by 2011] to assess and characterize service access, health, and functional outcomes" among diverse demographic groups. Comprising representatives of federal agencies and members of the public, the IACC coordinates efforts within the U.S. Department of Health and Human Services concerning ASD.

"This study will help us one day answer one of the most pressing issues in treating ASD," said NIMH Director Thomas R. Insel, M.D. "Bridging the gap in health care, service use, and insurance coverage as these young people leave the school systems and enter adulthood may help prevent lapses in behavioral, social, and occupational skills that they and their families have worked so hard to achieve."