A first-of-its-kind study co-authored by a Michigan State University scholar finds that adults with Williams syndrome – who are extremely social and trusting – use Facebook and other social networking sites frequently and are especially vulnerable to online victimization.
Roughly a third of study participants said they would send their photo to an unknown person, arrange to go to the home of a person they met online and keep online relationships from their parents.
“You have this very social group of people who are vulnerable in real life and now they are seeking a social outlet through the Internet, communicating with people they know and don’t know,” said Marisa Fisher, MSU assistant professor of special education. “They don’t have the training or the knowledge to know how to determine what is risky behavior.”
The study, co-authored by Fisher and Emma Lough, a doctoral student at Durham University in the United Kingdom, is published online in the Journal of Intellectual Disability Research.
Williams syndrome is a relatively rare genetic disorder characterized by developmental delays, learning disabilities, excessively social personalities and an affinity for music. Many adults with the syndrome live with their parents or other caregivers.
Fisher has studied Williams syndrome for more than a decade. She also directs an annual music camp for people with the syndrome that’s hosted by the Vanderbilt Kennedy Center in Nashville, Tenn., and supported by the ACM Lifting Lives Foundation.
A 2013 study led by Fisher found that people with Williams syndrome, autism and Down syndrome experienced extremely high rates of real-world teasing and bullying, theft and abuse. The current study is the first to investigate the online risk of victimization for adults with Williams syndrome.
Nearly 86 percent of adults with Williams syndrome use social networking sites such as Facebook nearly every day, typically without supervision, the study found. Participants also share a large amount of identifiable information on their social network profiles and are likely to agree to engage in socially risky behaviors.
Fisher is developing a social skills program for people with Williams syndrome that includes appropriate online behavior and safety. Her research suggests people with the syndrome can learn to say no to strangers, refuting past studies that indicated sociability may be hard-wired in individuals with Williams syndrome.
While the Internet provides an opportunity to enhance the everyday lives of adults with Williams syndrome, it also poses threats that are arguably more dangerous than those they face in the real world, the study concludes.
“It’s time to start teaching individuals with Williams syndrome about safety, both in the real world and online,” Fisher said. “This includes what personal information they should share, how to set privacy settings and how to decide whether an ‘online friend’ should become an ‘offline friend.’”