CDC awards Rutgers with $550,000 to track autism prevalence in NJ
The Centers for Disease Control and Prevention announced early January that it will invest more than $20 million over the next four years to track autism prevalence. Of the $20 million, Rutgers has been awarded $550,000 continue research on autism, spectrum disorders and child developmental disorders in New Jersey.
The University has joined the Autism and Developmental Disabilities Monitoring Network, a group of programs funded by the CDC to estimate the number of children living with autism in different areas of the United States.
Walter Zahorodny, an assistant professor of pediatrics in the Rutgers New Jersey Medical School, said continuing the surveillance of autism in New Jersey is especially important.
“New Jersey is [a] leading indicator of autism prevalence in the United States and shows us the true scope of this important disorder,” he said.
The University is among 10 research institutions that have received grant money from the CDC, a list that includes John Hopkins University, Washington University and the University of Arizona.
According to the CDC, the number of children with autism in the U.S. ranges from one in 175 children in Alabama to the higher percentage of one in 45 in the Garden State. An estimated 28,000 children in New Jersey between the ages of three and 18 have been diagnosed with autism.
Zahorodny attributes this higher concentration of children with autism in New Jersey to multiple factors.
He said some states in the ADDM Network, such as Wisconsin and Missouri, do not have the ability to review education records, so autism rates are not comparable.
“In other states, there may be different standards of educational service or fewer developmental health providers, making for underestimation of autism in those states,” he said.
Josephine Shenouda, a coordinator at Rutgers New Jersey Medical School, said the grant money will allow the program to continue using a retrospective, active case finding methodology designed by the CDC to track autism.
“Essentially, we travel to schools, clinical sources and Early Intervention programs in four New Jersey counties — Hudson, Ocean, Union and Essex counties,” she said.
A team of five research abstractors review charts from multiple sources searching for one of 34 abstraction triggers, Shenouda said.
She said abstraction triggers range from simple triggers, such as a child being diagnosed with autism spectrum disorder, to more specific abstraction triggers, such as “child has poor eye contact” or “child prefers to play alone.”
Once the research abstractor decides a case should be further reviewed, Shenouda said a de-identified file is compiled for that case.
“This includes professional evaluations from psychologists, speech and language therapists, OT and PT therapists, developmental pediatricians and social workers,” she said.
The review is then sent to expert clinician reviewers who determine whether the case is confirmed for ASD. Shenouda said the total number of identified cases in a study cycle is used to determine autism prevalence.
Zahorodny noted three benefits attached to further funding the tracking of autism prevalence.
By tracking autism prevalence, the state can gain a greater understanding of children affected by the disorder. This makes it possible to plan effective early intervention and special education services for these children.
Effective monitoring also enables the identification of disparities in care or service to affected children and to address these disparities, Zahorodny said.
“Finally, autism surveillance can be expanded to investigate autism risk and protective factors,” he said. “This will lead to better understanding of autism and possibly a reduction [in] the number of future cases.”
In addition to autism surveillance, Shenouda said the grant money would be used to participate in future research conferences and give opportunities to students.
“We have many opportunities for volunteers and work-study students who might be interested in the field of autism,” she said.
Stanley Yarlagadda, a School of Arts and Sciences first-year student interested in working in the field of autism in the future, believes it is important for the CDC to continue funding programs for tracking the disorder.
Yarlagadda said he has a friend who was diagnosed with autism and believes researching the disorder can only help the situation of people living with autism.
“The more we know about the disorder, and how many children in New Jersey have it, the easier it will be to help those people,” he said.