Williams syndrome (WS) is a rare genetic disorder caused by a micro-deletion of genes on chromosome 7, resulting in borderline to moderate levels of intellectual disability (Hillier et al., 2003; Mervis & John, 2010).
Individuals with WS are described as extremely social— displaying a lack of fear of strangers and over-friendliness toward strangers, leading many to engage in social encounters with both familiar and unfamiliar people (Jawaid et al., 2012; Jones et al., 2000). Despite their very sociable personality style, individuals with WS often experience interpersonal difficulties, leading to poor peer relationships and social isolation (Davies, Udwin, & Howlin, 1998; Dykens & Rosner, 1999; Jawaid et al., 2012). Thus, while increased sociability is generally considered positive, the overwhelming desire of individuals with WS to engage others increases vulnerability to exploitation, abuse, and being taken advantage of by others.
My research examines the social behaviors of individuals with WS, and how those social behaviors are related to friendship outcomes and increased risk of victimization. I then use these findings to develop safety and social skills training specifically for individuals with WS.
Development of the Social Skills Training Program for Adults with Williams Syndrome
This project is designed to develop and test a distance-delivered social skills training program for adults with WS (SSTP-WS) to enhance relationships and to decrease risk of social victimization.
The objective in this project is to develop the SSTP-WS, designed for telehealth delivery to teach adults with WS to establish and maintain peer relationships. We hypothesize that SSTP-WS will enhance social skills of adults with WS, leading to increased friendships and decreased social vulnerability. This study will be used to develop a web-based SSTP-WS curriculum that can be implemented with and disseminated to adults with WS across the country. The specific aims are:
- To develop, evaluate, and adapt the SSTP-WS curriculum, including training materials, measures of fidelity of implementation, and assessments, for telehealth delivery.
- To establish the feasibility and acceptability of the telehealth delivered SSTP-WS curriculum for adults with WS.
- To demonstrate the promise of the SSTP-WS as evidenced through change in social skills knowledge, social skills deficits and social vulnerability, friendships, and feelings of loneliness.