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Wendy Klag Center for Autism & Developmental Disabilities

Adolescence a new focus of

autism research at Johns Hopkins

Adolescent outcomes will be a new focus of autism research under CDC funding to the Johns Hopkins Bloomberg School of Health.  The funding comes under a new phase of the Autism and Developmental Disabilities Monitoring (ADDM) Network, the only collaborative network to monitor the number and characteristics of children with autism spectrum disorder (ASD) and other developmental disabilities in multiple communities throughout the United States.

Since 2000, ADDM has funded the surveillance of ASD among 8-year-olds, issuing periodic reports that have most recently estimated the prevalence of ASD at 1 in 59 children in the U.S. communities in its network. A new phase includes 4-year-olds and a follow-up of 16-year-olds who were previously identified by ADDM as having ASD. The teen follow-up is being conducted at the Johns Hopkins Bloomberg School of Public Health, the University of Arkansas site, and the CDC’s intramural site in Georgia. Funding began in January 2019 and will run for four years.

“A lot of prior autism research has focused on young children,” said Li-Ching Lee, PhD, ScM, who was principal investigator of the Maryland ADDM site until her death in 2021. “We don’t know very much about how adolescents with ASD are doing from a population perspective. The new addition of the ADDM Network will help to improve our understanding on their transition planning in needed services, and to provide valuable information for services providers and public health strategy. This is a first step. We have a lot to learn down the road.”

Lee was also an associate director of the Wendy Klag Center for Autism and Developmental Disabilities at the Bloomberg School. After Lee's death, WKC Director Dani Fallin and WKC Faculty Affiliate Elise Pas, PhD, became co-principal investigators of the project.

As in prior ADDM years, the network will track ASD eight existing sites (JHSPH, University of Arizona, University of Wisconsin, University of Minnesota, Rutgers The State University of New Jersey, University of Arkansas, Vanderbilt University Medical Center and Washington University in St. Louis) in addition to one new site (University of California), and one previously funded site (University of Utah).

The CDC will invest $16 million in the entire project. The CDC’s new investment in the Maryland project is almost $2.9 million.

Lee had been with the ADDM project since 2003. The sixth report by Maryland ADDM was released in April 2018, finding an overall prevalence rate of one in 59 among children age 8 years old in 2014.  In Maryland, the latest prevalence of ASD was found to be one in 50 8-year-olds.  The data were derived from health and special education records of children who were 8 years old and living in Baltimore County in 2014.

Funded sites monitoring ASD among school-aged children use a standardized methodology established by the ADDM Network. Sites involved in the new follow-up of 16-year-olds will collect data on ASD co-occurring conditions, limitations in activities, and educational service delivery, including planning for transition to adulthood.

Learn more about Maryland ADDM and see a recording of a June 2018 symposium about autism prevalence at this link.