ADDM Network Expands Surveillance to Identify Healthcare Needs and Transition Planning for Youth

Key points

  • CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network has expanded its autism spectrum disorder (ASD) surveillance to help communities identify healthcare needs and gaps in planning for transition to adulthood among youth with ASD.
  • Adolescents with ASD have complex education and health needs.
  • Adolescents with ASD will likely benefit from transition to adulthood planning and access to services and supports for people with ASD across their lifespans.
Young girl playing with small robot

Overview

CDC has expanded its ADDM Network's ASD surveillance to help communities identify healthcare needs and gaps in planning for transition to adulthood among youth with ASD. In 2018, five ADDM Network sites (Arkansas, Georgia, Maryland, Utah, and Wisconsin) began monitoring ASD among 16-year-old adolescents who were initially identified as having signs of ASD in 2010.

Diagnostic criteria and co-occurring conditions among adolescents with autism

Findings from the first ever ADDM Network report on 16-year-old children with ASD, who had signs of ASD at age 8 years:1

  • About 1 in 9 (11.6%) were first identified with ASD between the ages of 9 and 16 years.
  • Those who were not identified until ages 9 to 16 years (during 2011–2018) were more likely to be Hispanic, be born low birth weight, be verbal, have higher IQ, and have higher ability to perform everyday tasks than children identified by age 8.
  • Children with attention-deficit/hyperactivity-disorder (ADHD), anxiety, depression, or at least one instance of ASD being ruled out by age 8 years were more likely to be identified after age 8, compared with children without these characteristics.
  • Approximately 1 in 7 (14.7%) had ASD ruled out as a diagnosis or special education eligibility category before eventual ASD identification.
  • High rates of co-occurring health conditions (compared with rates reported for adolescents in the general population in previous studies23) included
    • ADHD and anxiety (both greater than 50%)
    • Suicidal behavior/ideation (17%)
    • Impairments that included intellectual disability (37%) or being nonverbal (15%)
  • Intellectual disability status remained relatively stable between ages 8 and 16 years; 80% had the same intellectual disability status at age 8 years as they did at age 16 years.

A deeper dive into transition planning

Individualized Education Programs and Transition Planning for Adolescents with Autism

Screenshot of CDC presenter for Pediatrics video.
Video about IEPs and transition planning for adolescents with ASD

Watch the video abstract in Pediatrics.

The ADDM Network released a report on transition planning in public schools that included 16-year-old students who were initially identified as having signs of ASD in 2010. This report looked at health and education records for students aged 16 years in 2018 from three of CDC's ADDM Network sites (Arkansas, Georgia, and Utah).

Among students with ASD and an Individualized Education Program (IEP) available for review:4

  • Students with intellectual disability were more likely than those without intellectual disability to receive many school services, including speech therapy, occupational therapy, physical therapy, and adaptive physical education. However, they were less likely to receive services for mental health than were students without intellectual disability.
    • Regardless of intellectual ability, none of the non-Hispanic Black students received mental health services, compared with one third of all other students.
  • The percentage of students with ASD served under an autism classification increased from 48% at age 8 years to 68% by age 16 years.
  • Almost all (92%) students with ASD had a transition plan included with their Individualized Education Program (IEP) by age 16 years.
    • 89% had a goal listed for pursuing education or training after high school and 93% had a goal listed for employment after high school (both are required goals).
    • 41% had a goal listed for living arrangements (optional goal).

Many adolescents with ASD have complex educational and health needs and will likely benefit from transition to adulthood planning and access to services and supports for people with ASD across their lifespans. Ensuring equitable access to services and supports for all people with ASD during adolescence and transition to adulthood would help to promote overall health and quality of life for people with ASD across their lifespans.

  1. Hughes MM, Shaw KA, Patrick ME, et al. Adolescents With Autism Spectrum Disorder: Diagnostic Patterns, Co-occurring Conditions, and Transition Planning. J Adolesc Health. 2023;73(2):271-278.
  2. Ghandour RM, Sherman LJ, Vladutiu CJ, et al. Prevalence and Treatment of Depression, Anxiety, and Conduct Problems in US Children. J Pediatr. 2019;206:256-267.e3.
  3. Danielson ML, Bitsko RH, Ghandour RM, Holbrook JR, Kogan MD, Blumberg SJ. Prevalence of Parent-Reported ADHD Diagnosis and Associated Treatment Among U.S. Children and Adolescents, 2016. J Clin Child Adolesc Psychol. 2018;47(2):199-212.
  4. Hughes MM, Kirby AV, Davis J, et al. Individualized Education Programs and Transition Planning for Adolescents With Autism. Pediatrics. 2023;152(1):e2022060199.