Autism and Developmental Disabilities Monitoring (ADDM) Network Expands Surveillance to Identify Healthcare Needs and Transition Planning for Youth

With the first Autism and Developmental Disabilities Monitoring (ADDM) Network reports 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 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, include the following¹:

• About 1 in 9 (11.6%) were first identified with ASD between the ages of 9-16 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 to 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 included (compared to rates reported for adolescents in the general population in previous studies^2–3):
  • 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

The ADDM Network also 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 across 3 of CDC’s ADDM Network sites (Arkansas, Georgia, and Utah).

Among students with ASD and an Individualized Education Program (IEP) available for review⁴:

• Students with intellectual disability were more likely than those without intellectual disability to receive many school services, including speech, 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 to a 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.
• Almost all (92%) students with ASD had a transition plan included with their 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); while,
  • 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.