Impact Feature Issue on Supporting the Social Well-Being of Children and Youth with Disabilities

Social networking sites have become an integral part of today's culture, especially for teens. Of the 65 percent of teens using sites such as Facebook and MySpace, 61 percent use them to send messages to their friends and 42 percent send messages to friends every day this way, according to a recent study by the Pew Internet & American Life Project (Lenhart, Madden, Smith, & Macgill, 2007). That's why it's important for parents to consider the special concerns and benefits involved for teens with disabilities using the sites, says Bridget Gilormini, coordinator of PACER's Simon Technology Center. "We need to understand the culture so we can educate our sons and daughters," she says. 

Social Networking Benefits

While teen use of social networking sites poses certain safety concerns, it can also help teens with disabilities develop the skills they need to move toward independence and adult life, says Deborah Leuchovius, coordinator of PACER's Technical Assistance on Transition and the Rehabilitation Act (TATRA) Project. "One obvious benefit is that youth can expand their circle of friends and even communicate more often with extended family," Leuchovius says. "Understanding that you have a personal network of friends and family may someday help a young person use that network to find a job. Drawing on one's own personal networks is one of the most effective strategies for finding employment." Teens with disabilities may also benefit in the following ways:

• Practicing social skills. One teen with a disability created a Facebook page with the help of his sister, andwithin a week had a network of 30 Facebook friends (all classmates). "It was interesting that these same kidsdidn't approach him at school," Leuchovius says. "For whatever reason, it may be easier for teens to initially approach a student with a disability on a social networking site instead of face to face. Conversing with someone on the computer may feel less awkward for both parties. Hopefully, it will break the ice and lead to more comfortable face-to-face interactions." A recent study from the MacArthur Foundation (Ito, Horst, Bittanti, Boyd, Herr-Stephenson, et al. , 2008) shows that online activity can help teens learn important social skills and develop and extend friendships, while another study suggests that the structured environment is helpful for practicing those skills. "Social networking sites open up a big world of communication," Gilormini says. Instead of having to reply instantly during a direct conversation or on the phone, teens have time to think about a response. For teens who have difficulty speaking because of disabilities, online social networking can be liberating. "It removes the time barrier," Gilormini says. A teen who uses a speaking device to talk, for example, says he prefers communicating through Facebook because it is a quicker method for him.
• Learning to use technology. Becoming comfortable with socialnetworking sites may also help teens adapt to a world that functions more and more with complex technologies. "Even entry-level jobs require that new workers have basic keyboard and computer skills. It's also common for colleges and other postsecondary institutions to use computer networks to communicate with students," Leuchovius says. "Using networking sites at a younger age may make the transition from high school to college easier."
• Developing independence. Adolescence is a time when teens typically learn to become independent from their parents, spend more time with peers, and form a personal identity. Moving toward independence can be difficult for teens if disabilities keep them dependent on their parents for longer periods of time. "Social networking sites can provide a way for teens with disabilities to make connections apart from their parents and gain autonomy," Leuchovius says. By joining an online group with a common interest through a social networking site, teens can build social supports and "hang out" with peers, even as they sit in their living room.
• Expressing personality. Talking on a social networking site may also bring a teen's personality to the forefront, while the focus on a disability lessens. "When teens communicate on Facebook or MySpace, the people they're talking to don't see the disability," Gilormini says. "All they see are the words."

Social Networking Concerns

While there are benefits of social networking sites for teens with disabilities, there are some risks that parents need to address with their teen, as well:

• Bullying. Some research has shown that youth with disabilities are at a greater risk of being bullied, and bullying can also occur on social networking sites. A "friend" accepted by your teen to a site might use the opportunity to send hateful messages. People can also create false identities as a way to harass someone.
• Misuse of personal information and passwords. Personal information or photos shared by a user can cause embarrassment, teasing, or pain for teens. Sharing information that is too personal, such as an online diary, could be used by teens who bully to ridicule others. Sharing passwords can also allow others to assume a teen's identity. "Once something is shared, the user loses control of how the information is used in the future," Gilormini says. Classmates of a teen in Canada, for example, posted a video on the Internet that he meant to keep private. He was so troubled after millions downloaded the 2-minute clip of him emulating a Star Wars light saber fight that he left the school and sought counseling.

In addition to these concerns, teensstruggling "offline" with issues related to their disability may encounter difficulties online, too. A teen having trouble reading social cues, for example, may become troubled by misinterpreting an online message. While it's important to be aware of possible problems, parents should avoid focusing on rare or hypothetical dangers, according to a 2008 report from the Berkman Center for Internet & Society at Harvard University (Palfrey, Sacco, Boyd, DeBonis et al., 2008). The report focuses on use of social media. It advises parents to help their children understand and navigate the technologies, creating a safe context so their children will turn to them if there are problems. "Trust and open lines of communication are often the best tools for combating risks," the report states. Among the report's findings:

• Social networking sites are not the most common space for solicitation or exposure to problematic content.
• Youth are not equally at risk online. Those most at risk often engage in risky behaviors in other parts of their lives.
• Family dynamics and a youth's pyschosocial makeup are better predictors of risk than is use of specific technologies.

What Parents Can Do

In determining whether and how a particular teen should use social networking sites, parents need to think about several things. First, decide if social networking is right for your teen. Consider your teen's maturity, the nature of your teen's disability, and his or her personality while weighing the benefits and concerns. If you believe your teen is ready for social networking or already uses a site, create your own profile and learn how it works. Explore the site's features, read the fine print, ask the service provider about parental controls, and teach your teen about the options. Options include choosing privacy settings so "only friends" (not friends of friends) are allowed on your teen's site. Consider using the setting options that do not allow photos of your child to be shared or e-mailed. You can also:

• Talk with your teen about: What photos, if any, will be posted on the site; what will be posted on a profile; cyberbullying (learn about preventing bullying by visiting Pacer’s National Bullying Prevention Center ).
• Tell your teen: Accept "friends" only if you know them offline; use manners – don't send a message if you're angry; online content lasts forever; save your most personal thoughts for a paper diary; keep your password private.
• Keep the computer in the family room.
• Consider monitoring your teen. "One way to give your teen a sense of accountability is to require that you are a 'friend' and are allowed to go on the site," Gilormini says. Parents can also require that their teen share their username and password.

Note: Adapted and reprinted from Pacesetter newsletter (Fall 2009), 2009. Used with permission from PACER Center Inc ., Minneapolis, MN. All rights reserved.