Social vulnerability in Williams syndrome

Abstract

This thesis focused on the high levels of social vulnerability experienced by individuals with Williams Syndrome (WS). The investigation began with parent interviews about social approach behaviour, with parents emphasising the lack of awareness of social boundaries that many individuals with WS display. The qualitative analysis also highlighted the within-syndrome variability in the parental accounts, prompting discussion on the heterogeneity of the WS social profile. Based on the atypical social approach behaviour described by parents, the subsequent studies addressed issues of personal space and interpersonal distance. Using a parent report questionnaire, it was found that children with WS were more likely to violate the personal space of others. This was followed up with a stop-distance paradigm which showed that children with WS failed to regulate their distance based on familiarity, and stood the same distance from a stranger as they did their parent, which was not the case for typically developing individuals. Given these findings, the research progressed to explore the issue of trust in WS. It was found that children with WS displayed higher levels of trust behaviour, compared to their mental age matched typically developing peers and struggled to decipher trustworthiness from faces. Taken together, these findings seem to suggest that children with WS could be experiencing high levels of social vulnerability on a daily basis.

It is widely accepted that this social vulnerability continues into adulthood, with increased levels of both independence and isolation posing a new set of challenges. The subsequent chapter probed the level of insight that adults with WS had about their own vulnerability. Using the Social Vulnerability Questionnaire, it was found that adults with WS consistently reported lower levels of vulnerability, compared to parent reports. This emphasised the need for multi-informant methods, and called for interventions which target self-awareness in order to increase intervention efficacy.

The final chapters looked at how this social vulnerability manifests in the online environment. It was found that adults with WS frequently use the Internet and the majority visit social networking sites every day or almost every day, with little parental supervision or oversight. These individuals were more likely to agree to engage in socially risky behaviours (e.g. meeting an “online friend” in person) compared to risky behaviours that were not social in nature when online (e.g. giving out passwords). A case study interview with an adult with WS and their parent highlighted that this individual held a broad definition of what a friend was and found they used the Internet as a tool to expand their social network, which was of great concern to their parent.

The findings included in this thesis provide in-depth information relating to social vulnerability in WS and offer the first insights into online social behaviour and online vulnerability in adults with WS. The theoretical and real-world implications of these findings are emphasised throughout and a number of suggestions are made to help the research progress towards intervention development.