MUSC launches first-of-its-kind autism study with local children
Community outreach to paint picture of condition's prevalence in tri-county area
CHARLESTON -- MUSC has received a $1 million grant from Autism Speaks to do a large-scale, first-of-its-kind study of all children born in 2004 in the Tri-county area involving any families willing to participate.
The three-year study, called the South Carolina Children's Educational Surveillance Study (SUCCESS) will conduct broad screening and targeted diagnostic assessment to better understand typical development in eight-year-old children as well as estimate the prevalence of autism spectrum disorders among children in Charleston, Berkeley and Dorchester counties.
Co-principal investigator Laura Carpenter, Ph.D., said it's exciting to be part of a study on this scale that can shed light on a disorder that affects record numbers of children, "This study is the first of its kind to be conducted in the U.S.," she said. "What makes it particularly exciting is that we really don't know what we will find. On the one hand, similar studies in other countries have found high rates of autism in the general population, maybe higher than we currently suspect. On the other hand, many people also think that autism is being over diagnosed."
Lydia King, Ph.D., who also serves as co-principal investigator on the study, said that all survey results are kept confidential and that participating families will receive a letter or phone call regarding their child's results. Some children will be invited to participate in a second phase of the study, for which compensation is provided. Parents who complete the survey are not obligated to participate in the second phase of the study.
Walter Jenner, information officer for the state's Autism and Developmental Disabilities Monitoring Network (ADDM) study, is part of the team tasked with making connections with local schools. More than 130 schools including public, private, charter and even home school, will be included, marking the first large scale involvement in regular education schools and with parents. Jenner said study results, available in 2015, will give health professionals and legislators a better understanding of autism prevalence as well as a rich source of information on characteristics and developmental trajectory. "It should help communities in planning and policy decisions. Some of the resources that are needed include therapies, trained teachers, diagnosticians, health care providers and related service professionals. Understanding the characteristics and number of children who have ASDs is key to promoting awareness of the condition, helping educators and providers to plan and coordinate service delivery, and identifying important clues for further research," he said.
Researchers are taking great care to ensure that all data collected for SUCCESS is stored on a secured system designed specifically for research. No information about any of the participating families will be shared with schools or any other state agency.
Carpenter said one hope of the study is that they may be able to identify some children who may have 'fallen through the cracks' otherwise, while another is to evaluate the changing criteria in diagnosing autism, particularly given the revision of the Diagnostic and Statistical Manual of Mental Disorders to a new version that will change the criteria of its diagnosis. "One of the biggest challenges of researching a disorder like autism is that the criteria keep changing over time," said Carpenter.
"It can be very difficult to determine whether there are more kids with autism, or whether our criteria have broadened to include more kids. We want to know how the upcoming changes in diagnostic criteria may impact who is diagnosed with the disorder. We know there are going to be some changes in who is identified, but it's not clear what those changes will be."
Carpenter said the more families who participate, the better the study will be.
"Parents need to know 'Your child counts.' This is like a census count of 8-year-old children. With your willing participation, our community here in SC has a chance to make a real impact in the lives of children throughout the nation."
The SUCCESS team will be in Charleston county schools during the 2012-2013 school year and in Dorchester and Berkeley county schools during the 2013-2014 school year. Children in private schools and being home schooled also will participate during both study years. For more information, visit www.musc.edu/success, email firstname.lastname@example.org or call 843-876-2875.