The prevalence of U.S. children with autism spectrum disorder (ASD) is now 1 in 59, according to new estimates released April 26 by the Centers for Disease Control and Prevention (CDC), a significant increase from the 1 in 69 increase in 2016.
Estimates range from 1 in 34 in New Jersey to 1 in 76 in Arkansas. Roughly 1 in 38 boys have autism, outnumbering girls 4 to 1, according to the report.
Vanderbilt University Medical Center partnered with the CDC to publish, for the first time, specific data regarding ASD prevalence in Tennessee, which is 1 in 64 for an 11-country region surrounding Nashville.
“The new CDC numbers are the best evidence we have of just how common this disorder is,” said Zachary Warren, Ph.D., executive director of the Vanderbilt Kennedy Center’s (VKC) Treatment and Research Institute for Autism Spectrum Disorders (TRIAD).
“While recent estimates have varied, we have always known the individual, familial, educational and societal costs that go along with autism are tremendous. In some communities we are now seeing autism in almost 3 percent of the population,” said Warren, also lead investigator for the Tennessee Autism and Developmental Disabilities Monitoring (ADDM) Network. “This means we need to be designing systems of care capable of meeting the tremendous needs of kids with ASD now and across the lifespan.”
VUMC participated in the population study through a grant from the CDC’s ADDM Network.
VKC TRIAD is working with the Tennessee Department of Education (TN DOE) to build capacity to meet the educational needs of children and young adults with ASD.
“In Tennessee, we have been fortunate to be working with leaders who have been quite forward-thinking in understanding the importance and challenge of meeting the educational needs of children with autism and their families,” said A. Pablo Juárez, TRIAD director and co-investigator of the TN ADDM network.
“This is a disorder you need to know about if you are an administrator, a teacher, parent, or medical provider. We need to be active in designing realistic and meaningful classrooms and systems of care,” he said.
TRIAD is using TN DOE technical assistance and training grants to meet educational and behavioral needs of children with ASD and their families through:
- a school-aged training program to equip teachers, special educators, and administrators with evidence-based resources for meeting classroom needs;
- an early childhood grant facilitating the development of model preschool classrooms and enhancing the preschool workforce for children with autism; and
- early intervention contracts utilizing advancements in telemedicine and early intervention to place meaningful services in the hands of families without delay.
“Without the support of the Tennessee Department of Education and district level advocates across Tennessee, we would not have been able to do this CDC work,” Warren said.
“TRIAD’s longstanding relationship with State and local educational leaders formed the basis for this work, but ultimately forms a larger and more important foundation aimed at realizing high-quality educational services for children with ASD in Tennessee.”
As recently as the 1970s, autism was believed to affect just 1 in 2,000 children. The newly released data are based on children born in 2006 and means autism possibly affects over 1 million U.S. children and teens.
“The reasons for this increase and variability are complex,” Warren said. “The increase certainly relates to how we define and monitor autism, increased awareness and better systems of care, as well as other factors that aren’t fully understood.”
Although early screening at 18 and 24 months is recommended by the American Academy of Pediatrics, the CDC data continue to document that children are often not receiving an ASD diagnosis until much later.
“In Tennessee, only 34 percent of children with autism received a comprehensive evaluation before 3 years of age,” Warren said. “We should be working to get that number closer to 90 percent or more.”
The CDC ADDM Network also included a specific comparison of new DSM-5 criteria with previously established DSM-IV criteria for autism. While some worried that these changes in criteria would cause a critical service gap for many, results indicated the number and characteristics of children with ASD were fairly similar using these differing criteria, with estimates for new criteria only shifting by less than 5 percent.
The ADDM Network is the largest, ongoing ASD tracking system in the U.S. The network methodology is population-based, which means they evaluate ASD across thousands (over 325,000 in current work) of children in diverse communities in the US. This is done by rigorously evaluating all available medical and educational records of children at 8-years of age to calculate the number who meet criteria for ASD.
The TN ADDM network will continue tracking the number and characteristics of children with ASD and will provide another report on Tennessee-specific data in 2 years. The TN ADDM Network is also actively partnering with the Tennessee Department of Children’s Services to better understand the prevalence of children with ASD within the child protection system.
Autism Data 2018 provides a summary of U.S. and Tennessee prevalence data and links to TRIAD services, training, and resources.
Jennifer Wetzel is senior information officer, Office of News and Communications, Vanderbilt University Medical Center.
Pictured top of page: Kingston, 2, is thriving with the help of TRIAD’s telemedicine initiative and services. Photo by John Russell/Vanderbilt University