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

In this first Autism and Developmental Disabilities Monitoring (ADDM) Network report on children aged 16 years with autism spectrum disorder (ASD), CDC marks an expansion of 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 characteristics of ASD in 2010.

Findings for 16-year-old children with ASD, who had signs of ASD at age 8 years, include the following

• Those who were not diagnosed until ages 9 to 16 years (during 2011 to 2018) were more likely to be Hispanic, be born with low birth weight, be verbal, have higher IQ, and higher ability to perform everyday tasks than children diagnosed by age 8 years.
• Children were also more likely to be identified as having ASD after age 8 years if diagnosed with anxiety, depression, or attention-deficit/hyperactivity-disorder (ADHD).
• About 1 in 9 (11.6%) were first identified with ASD between the ages of 9–16 years.
• 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 including
  • ADHD and anxiety (both greater than 50%)
  • Suicidal behavior/ideation (17%)
  • Impairments that included intellectual disability (37%) or being nonverbal (15%).
• Intellectual ability 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.
• The majority (94%) of these children received educational transition planning by age 16 years. However, while the overall prevalence of transition planning was high, disparities were observed by intellectual disability status. Those with intellectual disability were less likely to have a transition plan completed compared with those without intellectual disability. Further, despite few young adults with ASD living independently, more than 30% of children were missing a post-secondary goal related to post-secondary living arrangements, daily living skills, and community participation.

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 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.

Reference

Hughes MM, Shaw KA, Patrick ME, et al. Adolescents With Autism Spectrum Disorder: Diagnostic Patterns, Co-occurring Conditions, and Transition Planning [published online ahead of print, 2023 Feb 25]. J Adolesc Health. 2023;S1054-139X(23)00001-0. doi:10.1016/j.jadohealth.2022.12.010