“People with PWS have a real need to actually connect with others and have relationships." This was one of the many valuable insights shared by Elizabeth Roof, Senior Research Specialist at Vanderbilt University, and other panelists addressing social functioning in children and adults with PWS at the FPWR fall 2016 conference.
The fallacy that individuals with PWS do not desire friendships was just one of several misconceptions that Roof addressed as she began her talk – misconceptions that derive in part from the lack of research focused on understanding socialization in Prader-Willi, as well as from the real challenges that come with this particular syndrome.The panel, led by Elizabeth Roof, included Anastasia Dimitropoulos, Associate Professor of Psychology at Case Western University, and BJ Goff, Professor of Special Education at Westfield State University, all experts in their respective fields. You can view and listen to the panel in the video below.
Dispelling Misconceptions About Social Functioning in PWS
Other misconceptions addressed in the panel include the notion that the particular relationship people with PWS have with food prevents them from entering social settings. Perhaps most emphatically, Roof refuted the false belief that all PWS patients are autistic. Indeed, that the vast majority of individuals with PWS are not autistic has significant bearing on how we understand and support them in their particular types of social challenges.
“It’s really important to know that with the right setting and the right environment,” Roof emphasized, individuals with PWS “can really do fairly well in a lot of social situations.” Roof and her team have collected data on social skills in patients with PWS in a variety of ways, including talking with parents, distributing questionnaires, creating ERP tasks (measuring brain response to pictures), and observing patients in an authentic environment. Social tendencies that emerged from these data include the challenges for PWS individuals to focus on the important aspects of social interactions, to read social cues, to weigh actions versus intentions, and to pick up on subtleties like sarcasm.
Don't Limit Contact
These challenges, Roof argued, shouldn’t lead us to limit contact, but rather to focus on ways to equip individuals with PWS with skills to overcome them. “We all need to be a part of something bigger,” she said. For this, she added, providing opportunities is critical: “The kids who do the best socially are the ones who do things where they are out in the community.” Whether a church group, sports club, boy or girl scouts, music group, or Best Buddies, being involved and having the chance to practice interacting socially is critical to developing skills. “You cannot learn new skills without opportunities.” A significant added benefit to such interactions, as she noted, is to help with avoiding the kinds of isolation that can lead to psychiatric issues. Enlisting the support of those group leaders, Roof acknowledged, is also important, in terms of maintaining food security.
Turn Strengths Into Skills
Roof encouraged caregivers of those with PWS to help patients turn their strengths into skills. This might be to turn a desire to give back and to help into a role as a volunteer – whether in a situation with animals, small children, or other individuals with special needs. It might also even lead to a paying position, as in an example she provided of a young woman with PWS who found a fulfilling job working at PetSmart, where she was appreciated for her talents and strengths. Roof underscored the importance of “doing something that really matters” for members of this community.
New Projects Support Social Skills in PWS
At the close of her talk, Roof briefly discussed a new project, entitled BOSS-Building Our Social Skills. She and her team are developing interventions to support PWS individuals in developing social skills, including: identifying emotions, interacting effectively, handling conflict, and finding ways to stay connected and combat loneliness. The objective is to create a curriculum that may be used in many settings to support this community.
Following Roof’s talk, Dimitropoulos spoke briefly about some analogous projects in which she is involved. With a similar concern for social challenges in PWS population, she deals predominantly with the pre-school and early school-age groups. One of these projects is the FPWR funded grant “Evaluating the Parent-focused Remote Education To Enhance Development (PRETEND) Program in PWS.” This research makes use of “pretend play”, and focuses on trying to help PWS kids maximize their play as well as on the use of play as an intervention. Such play might be used as an intervention to foster skills in self-soothing/emotional regulation, as well as in task-switching. A second project, ‘telehealth’, uses video-conferencing technology to act out stories with toys. “For those young children and those young school-age children, we want to maximize their potential at this time and move them forward in the best direction that they can.” Information on how to participate can be found here and here.
Middle School Is Crucial Time
Finally, Goff added insights in her experiences with educational mediation and consultation especially at the middle school level and in residential settings. She stressed the importance of middle school as a critical age for practicing social skills with typical kids, including developing manners in different situations and acquiring abilities to negotiate romantic interests, especially with dating. “They are not going to pick up on it all by themselves. That’s our job,” she noted. In terms of the residential setting, Goff likewise underscored the importance of establishing opportunities to allow residents to interact and avoid isolation. Weekly house meetings, she suggested, are a great situation for learning social skills, planning skills, and conflict resolution. Because, as she pointed out, the residential setting becomes a permanent home for many PWS individuals, it is vital that a social community is available to them there.
You can help expand our knowledge and understanding of social functioning in PWS by participating in the Global PWS Registry. Within the Registry, there is a survey on well-being which is an opportunity to share your loved ones story on his/her friendships, and social/physical activities. Current Registry data shows that ~75% of participants engage in 3 or more social activities per month (N=106).