CDC Stepping Up Autism Monitoring Efforts
As federal officials launch a new round of autism surveillance, they’re looking at more than prevalence alone, with plans to track diagnostic changes, younger kids and other disabilities.
Researchers at 10 sites across the country will comb data from 2014 to determine up-to-date autism rates in their communities, the U.S. Centers for Disease Control and Prevention announced this month.
The effort is the latest in the agency’s routine monitoring. Every two years, the CDC works with researchers at sites across the country to examine autism incidence in a variety of American communities. The most recent data from the agency’s Autism and Developmental Disabilities Monitoring Network — collected in 2010 — suggests that autism affects 1 in 68 children.
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This time, however, officials say they’re looking to learn more from the numbers.
For the first time, the CDC is asking researchers to consider the impact of changes to the diagnostic criteria for autism that took effect in 2013 with the publication of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders. The agency is also taking steps to determine how communities are responding to figures showing an increasing number of children on the spectrum.
Meanwhile, the surveillance efforts will look beyond just autism, with the CDC requiring all research sites to track at least one other condition like cerebral palsy or intellectual disability.
“We’re not expanding in terms of the number of sites, but in terms of depth,” said Marshalyn Yeargin-Allsopp, chief of the developmental disabilities branch at the CDC’s National Centers on Birth Defects and Developmental Disabilities.
As in the past, the 10 sites selected for the 2014 data collection will scrutinize medical and educational records for 8-year-old children in their area to determine how many fall on the autism spectrum. Meanwhile, six of the sites will also assess records for 4-year-old children.
But the records review will use two lenses — examining each case to determine if a child would qualify for an autism diagnosis under the current criteria in the DSM-5 and under the somewhat different definition in the manual’s previous edition.
What’s more, the CDC is asking research sites to collect information about how communities are using prevalence data.
“We’re really interested in what does this mean for communities? How are they using these numbers in terms of services and in terms of who’s getting the services?” Yeargin-Allsopp said.
In addition to autism, eight sites will also look for cases of intellectual disability among children in their area while two sites will look at autism and cerebral palsy. The CDC already measures five conditions — autism, cerebral palsy, intellectual disability, hearing loss and vision impairment — among children in the Atlanta area.
The enhancements to the CDC’s autism surveillance efforts come as the agency’s methods have faced criticism. In an editorial published last summer, the editors of the journal Autism sharply questioned the reliability of figures culled from a records review alone.
Agency officials, however, insist that their approach has been validated and point to a 2011 study published in the Journal of Autism and Developmental Disorders which suggests that, if anything, their autism estimate is conservative.
Typically, the CDC releases new data on autism incidence every two years, with figures based on the 2012 data collection expected in 2016.
The CDC said it will invest more than $20 million over the next four years to track prevalence in 2014 and 2016.
Sites will include the Colorado Department of Public Health and Environment, Johns Hopkins University, Rutgers University, the University of Wisconsin-Madison, the University of Arizona, the University of Arkansas for Medical Sciences, the University of Minnesota, the University of North Carolina at Chapel Hill, Vanderbilt University and Washington University in St. Louis.