Following fragile Xers' transition
4-year study tracks high school seniors with fragile X syndrome as they transition into adulthood
By Chris Horn, firstname.lastname@example.org, 803-777-3687
A four-year study tracking high-school seniors with fragile X syndrome could yield new insights into how well these students transition into adulthood, says an Arnold School of Public Health researcher heading a portion of the study.
“We know very little about the factors that support teens with fragile X as they make the transition from high school into adulthood,” says Jessica Klusek, an assistant professor in the Department of Communication Sciences and Disorders. “The time after high school graduation tends to be challenging for individuals with fragile X and their families. Launching into adulthood raises new issues related to employment, independent living situations, guardianship and long-term care.”
High school graduation is a critical point in the transition because it marks the end of access to school-based services, Klusek says, adding that families often must navigate these new challenges with limited support services — the so-called disability cliff.
“The primary goal of our study is to determine the factors that support individuals with fragile X as they make this leap into the adulthood, with a focus on language skills,” Klusek says.
The University of South Carolina joins Vanderbilt and the University of California-Davis as research sites where participants will be flown in for evaluations over the course of the four-year project. Participants evaluated at South Carolina will be recruited from states in the Northeast and Southeast. The project is funded by the National Institutes of Health.
Fragile X syndrome, caused by a gene mutation on the X chromosomes, is the No. 1 inherited cause of intellectual disability and the most common known genetic cause of autism worldwide. About 60 percent of boys with fragile X meet the diagnostic criteria for autism, while about 20 percent of girls with fragile X have co-occuring autism.
We’re studying girls and boys, which makes this grant unique because the majority of fragile X syndrome research has focused solely on males because they tend to be more affected.
Jessica Klusek, assistant professor of communication sciences and disorders
“We see girls with fragile X who don’t even know they have fragile X — they have master’s degrees and careers — and we also see those with severe intellectual disability and autism,” Klusek says.
The study will examine how successful the students transition into adult life by considering their adaptive behaviors, how they spend their daily lives and whether they are able to live alone, hold a job and participate in recreational activities. The project will specifically look at how language skills and other factors predict success in the transition to adulthood.
“We’re studying girls and boys, which makes this grant unique because the majority of fragile X syndrome research has focused solely on males because they tend to be more affected,” Klusek says. “The fact we’re including females will address some gaps in our knowledge and help us better serve both males and females with the syndrome.”
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