Autism and Developmental Disabilities Monitoring (ADDM) Network Expands Surveillance to Identify Healthcare Needs and Transition Planning for Youth
Many adolescents with autism spectrum disorder (ASD) have complex educational and health needs. These adolescents will likely benefit from transition planning and access to services and supports as they grow into adulthood.
CDC leads public health efforts for people with disabilities and developmental concerns across the lifespan through data collection, evidence-informed strategies, and partnerships.
CDC tracks the number and characteristics of children and adolescents with ASD to understand factors associated with outcomes as they age and transition to adulthood. CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network began tracking 16-year-old children with ASD at five ADDM Network sites in 2018 and has since expanded its adolescent work to nine sites. Read more about the work being done at CDC’s ADDM Network sites.
CDC’s Study to Explore Early Development (SEED) Follow-Up study is also helping CDC learn more about the health, functioning, and needs of people with ASD and other developmental disabilities as they mature into adolescence and adulthood.
These monitoring and research activities help communities identify healthcare needs and gaps in planning for transition to adulthood among youth with ASD.
Healthcare providers, educators, and families play important roles in supporting children and adolescents with ASD in achieving their optimal health, as well as finding overall success in their education, employment, and independence after high school.
CDC works with partners to identify factors that may be contributing to differences in co-occurring health conditions, such as anxiety, among adolescents with ASD and disparities in access to supports and services. These data can help guide important decisions in developing service delivery processes, reducing barriers to educational support programs, and identifying and treating co-occurring health conditions even before a child reaches adolescence.
Learn about the importance of early identification for ASD and other developmental delays or disabilities by visiting Why Act Early if You’re Concerned about Development? CDC’s Milestone Tracker app offers parents and providers important information about a child’s development.
CDC’s latest study about adolescents with ASD comes from data collected by the ADDM Network in 2020. These findings provide important information for policymakers to use to improve the quality of services and reduce disparities in receiving services for adolescents with ASD.
Health Status and Educational Services
Data on the health status of 16-year-olds with ASD and the educational services they receive across the United States can help identify healthcare needs sooner and better inform transition planning for post-high school life. The latest data on adolescents with ASD provides policymakers with information on specific areas, including the following:
- Mental health for youth with ASD
- School services and planning provided for students with ASD with an Individualized Education Program (IEP)
- COVID-19 impact
- Transition planning for life after high school
Study findings1 included:
Adolescents with ASD and intellectual disability were less likely to have documented co-occurring anxiety, depression, or suicidal ideation/behavior and less likely to receive school-based mental health services than those without intellectual disability. This may be related to challenges with screening and diagnosis of these conditions among those with intellectual disability.
- Black adolescents with ASD were less likely to have documented co-occurring anxiety or depression than White and Hispanic adolescents, which may indicate disparities in identification and treatment for Black adolescents.
Wide variation was found in provision of IEP services across sites (states) that may be due to differences at the district or state levels in policy, programs, or resources available for students with autism with an IEP.
Researchers found many transition plans and post-secondary goals (more than 90%) completed for adolescents with ASD, with the exception of the IEP independent living goal, which had lower completion rates for those without intellectual disability (36%) compared with those with intellectual disability (62%). Researchers also found large differences in completion rates across ADDM Network sites (17%–96%).
More detailed findings can be found in the Pediatrics article: Health Conditions, Education Services, and Transition Planning for Adolescents With Autism.
- Adolescents With Autism Spectrum Disorder: Diagnostic Patterns, Co-occurring Conditions, and Transition Planning
- Individualized Education Programs and Transition Planning for Adolescents With Autism
- Autism Acceptance Month Partner Toolkit | Autism | NCBDDD | CDC
- “Learn the Signs. Act Early.” | CDC
- Improving Access to Children’s Mental Health Care | CDC
- Helping Families Navigate Systems: Special Education and SSI for Children with Disabilities
References
- Hughes MM, Pas ET, Durkin MS, et al. Health Conditions, Education Services, and Transition Planning for Adolescents With Autism. Pediatrics. 2024;153(4):e2023063672. doi:10.1542/peds.2023-063672
