Williams syndrome often presents with the trait of individuals having very social personalities, which can be a good thing. However, with the increase in online activity and popularity with connecting on social networks, the sociability and trusting natures of individuals with WS can pose some challenges. Being able to connect with like-minded individuals with developmental and intellectual disabilities is valuable, but so is safety.
Marisa H. Fisher, PhD, BCBA-D, Assistant Professor within the Dept. of Counseling, Educational Psychology, & Special Education at Michigan State University, along with her research partner E. Lough, Department of Psychology, Durham University, UK, published an article in the Journal of Intellectual Disability Research outlining their findings on the topic. Their research is based on adults rather than children with WS, who should be monitored the same as any minor online.
At the Vanderbilt ACM Lifting Lives Music Camp, (which Dr. Fisher runs), Fisher and Lough conducted a survey on internet use that included 28 adults with WS (22 male, 6 female) and their parents (3 fathers, 25 mothers). The average age of the participants with WS was 27.7. The goal was to discover how individuals with WS interact online; results showed that they are much more willing to engage in risky behavior (i.e. meeting strangers) due to their trusting natures, which was not a surprise. They were given scenarios, such as:
“You met a new friend online named Alex. You like all of the same things and have a lot in common, but you have never met before in real life. Alex wants to meet up soon so you can do something fun together. What would you do?”
The risky behavior was most prevalent when the scenario involved a social encounter, where they also indicated they were willing to keep online relationships a secret, which is important to consider. When it was a choice such as disclosing bank account passwords or other information, they were more likely to understand that they should not reveal financial information to strangers, so that practical lesson seems to be sticking more than relationship warnings.
The results also indicated that adults with WS do not generally employ online safety techniques, as more than half had a public Facebook profile and almost half indicated they would agree to meet an ‘online friend’ in person.
So what is a parent or caregiver to do about this issue? Fisher, a friend and research partner of the WSA, emphatically stresses that the recommendation is not to cut off access to the internet (it’s a life-line for so many), but rather to help them make good decisions and not be afraid to disclose the dangers to them—treating them like adults and being honest. Work with them on privacy settings. Ask questions.
Because individuals with WS can have a strong desire not to hurt others’ feelings, the approach needs to be reinforced with behavior exercises about strangers, making individuals with WS understand that it’s okay to ignore strangers, and that it doesn’t hurt the strangers’ feelings—that difference between a friend and a random internet stranger must be established firmly. The goal should be for them to get to the point where they are not keeping secrets, leaving them with the understanding that they must tell someone if they’re communicating with strangers, as well as getting them to trust their own instincts. Of the parents who took part in the surveys, only 11 percent said they provided any supervision of internet usage to their child with WS, and it’s not practical to expect busy parents to do it all the time. So while we want to individuals with WS (especially adults) autonomy and treat them like adults, the reinforcement works, and is recommended.
Fisher plans on expanding on the research and conducting larger surveys, as this is an important 21st century topic within the disabilities research community. The WSA will continue to communicate the latest research on this topic, as we know it will only become more vital for the safety and well-being of individuals.
View the link below to read the entire published journal article.