Advertisement

Journal of Autism and Developmental Disorders

, Volume 46, Issue 11, pp 3424–3433 | Cite as

Parent and Self-Report Ratings on the Perceived Levels of Social Vulnerability of Adults with Williams Syndrome

  • Emma LoughEmail author
  • Marisa H. Fisher
Original Paper

Abstract

The current study took a multi-informant approach to compare parent to self-report ratings of social vulnerability of adults with Williams syndrome (WS). Participants included 102 pairs of adults with WS and their parents. Parents completed the Social Vulnerability Questionnaire and adults with WS completed an adapted version of the questionnaire. Parents consistently reported higher levels of social vulnerability for their son/daughter than the individual with WS reported, with the exception of emotional abuse. The lower ratings of social vulnerability by adults with WS, compared to their parents, offer new information about their insight into their own vulnerability. These findings highlight the importance of teaching self-awareness as a part of a multi-informant approach to interventions designed to target social vulnerability.

Keywords

Social vulnerability Victimisation Williams syndrome Intellectual disability 

Notes

Acknowledgments

This study was partially supported through funding from the Institute for Research on Teaching and Learning within the College of Education at Michigan State University. The authors would like to acknowledge the advice and guidance of Dr. Deborah Riby and Dr. Meghan Burke in the preparation of this manuscript. The work would not have been possible without the support of the Williams Syndrome Association, the Vanderbilt Kennedy Center’s ACM Lifting Lives Music Camp, and all families who participated.

Author Contributions

EL conceived of this study, participated in its design and performed the measurement, aided with the statistical analysis and drafted the manuscript. MF participated in the study design and coordination, performed the measurement and the statistical analysis and drafted the manuscript. Both authors read and approved the final manuscript.

Compliance with Ethical Standards

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in the study.

References

  1. Burke, M. M., Taylor, J. L., Urbano, R., & Hodapp, R. (2012). Predictors of future caregiving by adult siblings of individuals with intellectual and developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 117, 33–47.CrossRefPubMedGoogle Scholar
  2. 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, 273–276. doi: 10.1192/bjp.172.3.273.CrossRefPubMedGoogle Scholar
  3. De Los Reyes, A., Augenstein, T. M., Wang, M., Thomas, S. A., Drabick, D. A., Burgers, D. E., et al. (2015). The validity of the multi-informant approach to assessing child and adolescent mental health. Psychological Bulletin, 141(4), 858–900.CrossRefPubMedPubMedCentralGoogle Scholar
  4. De Los Reyes, A., Thomas, S. A., Goodman, K. L., & Kundey, S. M. (2013). Principles underlying the use of multiple informants’ reports. Annual Review of Clinical Psychology, 9, 123–149.CrossRefPubMedGoogle Scholar
  5. Emmerson, L. C., Granholm, E., Link, P. C., McQuaid, J. R., & Jeste, D. V. (2009). Insight and treatment outcome with cognitive-behavioral social skills training for older people with schizophrenia. Journal of Rehabilitation Research and Development, 46(8), 1053–1058.CrossRefPubMedGoogle Scholar
  6. Fisher, M. H., Lense, M. D., & Dykens, E. M. (in press). Longitudinal trajectories of intellectual and adaptive functioning in adolescents and adults with Williams syndrome. Journal of Intellectual Disability Research. Google Scholar
  7. Fisher, M. H., Mello, M. P., & Dykens, E. M. (2014). Who reports it best? A comparison between parent-report, self-report, and the real life social behaviors of adults with Williams syndrome. Research in Developmental Disabilities, 35, 3276–3284.CrossRefPubMedPubMedCentralGoogle Scholar
  8. Fisher, M. H., Moskowitz, A. L., & Hodapp, R. M. (2012). Vulnerability and experiences related to social victimization among individuals with intellectual and developmental disabilities. Journal of Mental Health Research in Intellectual Disabilities, 5, 32–48.CrossRefGoogle Scholar
  9. Fisher, M. H., Moskowitz, A. L., & Hodapp, R. M. (2013). Differences in social vulnerability among individuals with autism spectrum disorder, Williams syndrome, and Down syndrome. Research in Autism Spectrum Disorders, 7, 931–937.CrossRefPubMedPubMedCentralGoogle Scholar
  10. Greenspan, S., Loughlin, G., & Black, R. S. (2001). Credulity and gullibility in people with developmental disorders: A framework for future research. In L. M. Glidden (Ed.), International review of research in mental retardation (Vol. 24, pp. 101–135). San Diego: Academic Press.Google Scholar
  11. Hillier, L., Fulton, R., Fulton, L., Graves, T., Pepin, K., Wagner-McPherson, C., et al. (2003). The DNA sequence of human chromosome. Nature, 7, 157–164.CrossRefGoogle Scholar
  12. Järvinen, A., Korenberg, J. R., & Bellugi, U. (2013). The social phenotype of Williams syndrome. Current Opinion in Neurobiology, 23, 414–422.CrossRefPubMedPubMedCentralGoogle Scholar
  13. Järvinen-Pasley, A., Adolphs, R., Yam, A., Hill, K. J., Grichanik, M., Reilly, J., et al. (2010). Affiliative behavior in Williams syndrome: Social perception and real-life social behavior. Neuropsychologia, 48, 2110–2119.CrossRefPubMedPubMedCentralGoogle Scholar
  14. Jawaid, A., Riby, D., Owens, J., White, S., Tarar, T., & Schulz, P. (2012). ‘Too withdrawn’ or ‘too friendly’: Considering social vulnerability in two neuro-developmental disorders. Journal of Intellectual Disability Research, 56, 335–350.CrossRefPubMedGoogle Scholar
  15. Kaufman, A. S., & Kaufman, N. L. (2004). Kaufman Brief Intelligence Test (2nd ed.). Bloomington, MN: Pearson.Google Scholar
  16. Llewellyn, P., & Northway, R. (2008). The views and experiences of people with intellectual disabilities concerning advocacy A focus group study. Journal of Intellectual Disabilities, 12(3), 213–228.CrossRefPubMedGoogle Scholar
  17. Lough, E., Flynn, E., & Riby, D. (2015). Mapping real-world to online vulnerability in young people with developmental disorders: Illustrations from autism and Williams syndrome. Review Journal of Autism and Developmental Disorders, 2, 1–7. doi: 10.1007/s40489-014-0029-2.CrossRefGoogle Scholar
  18. Mansell, J., Beadle-Brown, J., Cambridge, P., Milne, A., & Whelton, B. (2009). Adult protection incidence of referrals, nature and risk factors in two English local authorities. Journal of Social Work, 9(1), 23–38.CrossRefGoogle Scholar
  19. Medalia, A., & Lim, R. W. (2004). Self-awareness of cognitive functioning in schizophrenia. Schizophrenia Research, 71(2), 331–338.CrossRefPubMedGoogle Scholar
  20. Mervis, C. B., Kistler, D. J., John, A. E., & Morris, C. A. (2012). Longitudinal assessment of intellectual abilities of children with Williams syndrome: Multilevel modeling of performance on the Kaufman Brief Intelligence Test-Second Edition. American Journal on Intellectual and Developmental Disabilities, 117, 134–155. doi: 10.1352/1944-7558-117.2.134.CrossRefPubMedPubMedCentralGoogle Scholar
  21. Mervis, C. B., Robinson, B. F., Bertrand, J., Morris, C. A., Klein-Tasman, B. P., & Armstrong, S. C. (2000). The Williams syndrome cognitive profile. Brain and Cognition, 44, 604–628.CrossRefPubMedGoogle Scholar
  22. Mitchell, K. J., Jones, L. M., Finkelhor, D., & Wolak, J. (2011). Internet-facilitated commercial sexual exploitation of children: Findings from a nationally representative sample of law enforcement agencies in the United States. Sexual Abuse: A Journal of Research and Treatment, 23, 43–71.Google Scholar
  23. Nettelbeck, T., & Wilson, C. (2001). Criminal victimization of persons with mental retardation: The influence of interpersonal competence on risk. International Review of Research in Mental Retardation, 24, 137–169.CrossRefGoogle Scholar
  24. Nettelbeck, T., & Wilson, C. (2002). Personal vulnerability to victimization of people with mental retardation. Trauma, Violence, & Abuse, 3, 289–306.CrossRefGoogle Scholar
  25. O’Leary, P. J., & Barber, J. (2008). Gender differences in silencing following childhood sexual abuse. Journal of Child Sexual Abuse: Research, Treatment, and Program Innovations for Victims, Survivors, and Offenders, 17, 133–143.CrossRefGoogle Scholar
  26. Riby, D. M., Hanley, M., Kirk, H., Clark, F., Little, K., Fleck, R., et al. (2014). The interplay between anxiety and social functioning in Williams syndrome. Journal of Autism and Developmental Disorders, 44, 1220–1229.CrossRefPubMedGoogle Scholar
  27. Rosner, B. A., Hodapp, R. M., Fidler, D. J., Sagun, J. N., & Dykens, E. M. (2004). Social competence in persons with Prader-Willi, Williams and Down’s syndromes. Journal of Applied Research in Intellectual Disabilities, 17(3), 209–217.CrossRefGoogle Scholar
  28. Searcy, Y. M., Lincoln, A., Rose, F., Klima, E., Bavar, N., & Korenberg, J. R. (2004). The relationship between age and IQ in adults with Williams syndrome. American Journal on Mental Retardation, 109, 231–236.CrossRefPubMedGoogle Scholar
  29. Seltzer, M. M., & Li, L. W. (1996). The transitions of caregiving: Subjective and objective definitions. The Gerontologist, 36, 614–626.CrossRefPubMedGoogle Scholar
  30. Stromme, P., Bjomstad, P. G., & Ramstad, K. (2002). Prevalence estimation of Williams syndrome. Journal of Child Neurology, 17(4), 269–271.CrossRefPubMedGoogle Scholar
  31. Tavakol, M., & Dennick, R. (2011). Making sense of Cronbach’s alpha. International Journal of Medical Education, 2, 53–55.CrossRefPubMedCentralGoogle Scholar
  32. Thurman, A. E., & Fisher, M. H. (2015). The Williams syndrome social phenotype: Disentangling the contributions of social interest and social difficulties. International Review of Research in Developmental Disabilities, 49, 191–227.CrossRefGoogle Scholar
  33. Wilson, C., & Brewer, N. (1992). The incidence of criminal victimisation of individuals with an intellectual disability. Australian Psychologist, 27(2), 114–117.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2016

Authors and Affiliations

  1. 1.Department of PsychologyDurham University, Science LaboratoriesDurhamUK
  2. 2.Department of Counseling, Educational Psychology and Special EducationMichigan State UniversityEast LansingUSA

Personalised recommendations