WS and Friendship I

WS and Friendship I – Initiation of International Collaboration (04/2019 - 06/2022)

Enhancing Understanding of Friendship Development, Feelings of Loneliness, and Experiences of Social Victimization Among Individuals with Williams Syndrome to Inform Research and Improve Outcomes for Individuals with Intellectual Disability

Initial Position

Williams syndrome is a complex neurodevelopmental disorder occurring in 1 in 7500 live births (Strømme, Bjørnstad, & Ramstad, 2002) caused by a deletion of ~26 genes on chromosome 7q11.23 (Hillier et al., 2003). Individuals with Williams syndrome demonstrate extreme interest in interacting with other people (Klein-Tasman & Mervis, 2003; Klein-Tasman et al., 2011; Mervis et al., 2003) and are often characterized as gregarious (Gosch & Pankau, 1997), charming (Fryns, Borghgraef, Volcke, & Van den Berghe, 1991), and disinhibited in their social approach behavior towards both familiar and unfamiliar people (Järvinen, Korenberg, & Bellugi, 2013). Despite their sociable nature, individuals with Williams syndrome experience a number of social difficulties, including trouble establishing and maintaining peer relationships (e.g., Davies, Udwin, & Howlin, 1998; Sullivan, Winner, & Tager-Flusberg, 2003). Such difficulties result in nearly 75% of adults with Williams syndrome reporting feelings of social isolation (Davies et al., 1998), 30% reporting difficulty forming friendships, and 49% reporting a poor understanding of the concept of friendship (Elison, Stinton, & Howlin, 2010). In addition, individuals with Williams syndrome are at increased risk for interpersonal difficulties in post-secondary education, trouble getting along with colleagues at work, and trouble maintaining romantic relationships (Davies et al., 1997; Elison et al., 2010). In recent years, Fisher (Fisher & Morin, 2017, Lough &Fisher, 2016) has launched a research agenda to better understand this seemingly paradoxical combination of an extremely sociable and friendly disposition and significant difficulty with reciprocal-social interactions. Specifically, Fisher has examined 1) how social skills deficits impact friendship development and feelings of loneliness for individuals with Williams syndrome; and 2) why individuals with Williams syndrome experience of social victimization. Prosetzky (2014) has contributed a theoretical approach to better understand the paradoxical combination of an extremely sociable and friendly disposition and significant difficulty with reciprocal-social interactions of individuals with Williams syndrome on the basis of the neuropsychological development theories of Vygotskij (Lompscher, 2003) and Lurija (1966, 1997). Fisher and Prosetzky are working to form an international collaboration to better understand the conditions under which friendship outcomes can be improved for individuals with Williams syndrome and those with IDD more broadly. They will examine the specific variables related to friendship difficulties and social vulnerability, working to determine ways to improve outcomes and enhance friendship qualities for adults with Williams syndrome. This research will not only help the majority of adults with William syndrome who report feelings of loneliness and social isolation, but will also inform supports for individuals with other types of IDD.

Project Modules

Prof. Prosetzky trip abroad for 2 months to USA and to visit Michigan State University (between August to October 2019)

Delivery of an exploratory bilateral workshop in March 2020 (the date had to be postponed to autumn due to the corona pandemic), participants, inter alia, Prof. Dr. Marisa H. Fisher, Prof. Dr. Bonnie Klein-Tasman (Department of Psychology, University of Wisconsin-Milwaukee, USA), Prof. Dr. Jo van Herwegen (Department of Psychology and Human Development, University College London, Institute of Education, UK)

Project Objectives

Launch a research agenda to better understand the social experiences of adults with Williams syndrome

First, develop a cross-cultural survey to examine how social skills deficits, friendship quality, and feelings of loneliness are related to social vulnerability and to understand better the within-group differences that exist with these variables.

Next, the authors will conduct interviews with selected survey respondents in both the US and Germany to better understand their social experiences and specific situations they have faced.

Results of this project will be used to inform the development of systematic interventions to support adults with Williams syndrome and other types of neurodevelopmental disorders. 

Bibliography

  • Davies, M., Udwin, O., & Howlin, P. (1998). Adults with Williams syndrome. Preliminary study of social, emotional and behavioural difficulties. The British Journal of Psychiatry, 172(3), 273-276.
  • Elison, S., Stinton, C., & Howlin, P. (2010). Health and social outcomes in adults with Williams syndrome: Findings from cross-sectional and longitudinal cohorts. Research in Developmental Disabilities, 31, 587-599.
  • Fisher, M.H. & Morin, L. (2017). Addressing social skills deficits in adults with Williams syndrome. Research in Developmental Disabilities, 71, 77-87.
  • Fryns, J. P., Borghgraef, M., Volcke, P., & Van den Berghe, H. (1991). Adults with Williams syndrome. American Journal of Medical Genetics, 40(2), 253-253.
  • Gosch, A., & Pankau, R. (1997). Personality characteristics and behaviour problems in individuals of different ages with Williams syndrome. Developmental Medicine & Child Neurology, 39(8), 527-533.
  • Hillier, L. W., Fulton, R. S., Fulton, L. A., Graves, T. A., Pepin, K. H., Wagner-McPherson, C., ... & Minx, P. (2003). The DNA sequence of human chromosome 7. Nature, 424(6945), 157-164.
  • Järvinen, A., Korenberg, J. R., & Bellugi, U. (2013). The social phenotype of Williams syndrome. Current Opinion in Neurobiology, 23(3), 414-422.
  • Klein-Tasman, B. P., Li-Barber, K. T., & Magargee, E. T. (2011). Honing in on the social phenotype in Williams syndrome using multiple measures and multiple raters. Journal of Autism and Developmental Disorders, 41(3), 341-351.
  • Klein-Tasman, B. P., & Mervis, C. B. (2003). Distinctive personality characteristics of 8-, 9-, and 10-year-olds with Williams syndrome. Developmental Neuropsychology, 23(1-2), 269-290.
  • Lompscher, J. (2003). Lew Vygotskij - Ausgewählte Schriften - Band 1 & 2. Berlin: Lehmanns Media-LOB.de.
  • Lough, E. & Fisher, M.H. (2016). Parent and self-report ratings on the perceived levels of social vulnerability of adults with Williams syndrome. Journal of Autism and Developmental Disorders, 46, 3424-3433.
  • Lurija, A. R. (1966). Higher cortical functions in man. New York: Basic Books.
  • Lurija, A. R. (1997). The working brain: an introduction to neuropsychology. New York: Basic Books.
  • Mervis, C. B., & John, A. E. (2010). Cognitive and behavioral characteristics of children with Williams syndrome: implications for intervention approaches. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 154C(2), 229-248.
  • Mervis, C. B., Morris, C. A., Klein-Tasman, B. P., Bertrand, J., Kwitny, S., Appelbaum, L. G., & Rice, C. E. (2003). Attentional characteristics of infants and toddlers with Williams syndrome during triadic interactions. Developmental Neuropsychology, 23(1-2), 243-268.
  • Strømme, P., Bjømstad, P. G., & Ramstad, K. (2002). Prevalence estimation of Williams syndrome. Journal of child neurology, 17(4), 269-271.
  • Sullivan, K., Winner, E., & Tager-Flusberg, H. (2003). Can adolescents with Williams syndrome tell the difference between lies and jokes?. Developmental Neuropsychology, 23(1-2), 85-103.
  • Prosetzky, I. (2014). Mehr als die Summe seiner Symptome: Zur kulturhistorischen Neuropsychologie und Pädagogik des Williams-Beuren-Syndroms. Berlin: Lehmanns.

Project Funding

The project is funded by Deutsche Forschungsgemeinschaft (DFG) with € 12,000.

Contact

Foto: Prof. Dr. phil. Ingolf Prosetzky
Prof. Dr. phil.
Ingolf Prosetzky
Fakultät Sozialwissenschaften
Campus 02826 Görlitz
Furtstraße 2
Building I, Room 2.07
+49 3581 374-4287
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