Understanding the Experience of Stigma for Parents of Children with Autism Spectrum Disorder and the Role Stigma Plays in Families’ Lives

Abstract

Stigma is widely perceived in the lives of families with autism spectrum disorder (ASD) yet large, systematic studies have not been undertaken. Following Link and Phelan’s (Ann Rev Sociol 27:363–385, 2001) model, this study of 502 Simons Simplex Collection families details how different factors contribute to stigma and how each appears to increase the overall difficulty of raising a child with ASD. The model begins with the child’s behavioral symptoms and then specifies stigma processes of stereotyping, rejection, and exclusion. Autism behaviors contribute both to the difficulty families experience raising a child with autism and to the stigma processes associated with those behaviors. Stigma also plays a significant role (.282, p < .001) in predicting how difficult life is overall for parents.

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References

  1. Butler, R. C., & Gillis, J. M. (2011). The impact of labels and behaviors on the stigmatization of adults with Asperger’s disorder. Journal of Autism and Developmental Disorders, 41(6), 741–749.

    Article  PubMed  Google Scholar 

  2. Chambres, P., Auxiette, C., Vansingle, C., & Gil, S. (2008). Adult attitudes toward behaviors of a six-year-old boy with autism. Journal of Autism and Developmental Disorders, 38(7), 1320–1327.

    Article  PubMed  Google Scholar 

  3. Cronbach, L. J. (1951). Coefficient alpha and the internal structure of tests. Psychometrika, 16(3), 297–334. doi:10.1007/bf02310555.

    Article  Google Scholar 

  4. Farrugia, D. (2009). Exploring stigma: Medical knowledge and the stigmatization of parents of children diagnosed with autism spectrum disorder. Sociology of Health & Illness, 31(7), 1011–1027.

    Article  Google Scholar 

  5. Fischbach, G. D., & Lord, C. (2010). The Simons Simplex Collection: A resource for identification of autism genetic risk factors. Neuron, 68(2), 192–195.

    Article  PubMed  Google Scholar 

  6. Fischbach, R. L., Harris, M. J., Ballan, M. S., Fischbach, G. D., Link, B. G. (2015). Is there concordance in attitudes and beliefs between parents and scientists about autism spectrum disorder? Autism. doi:10.1177/1362361315585310.

    PubMed  Google Scholar 

  7. Gill, J., & Liamputtong, P. (2011). Being the mother of a child with Asperger’s syndrome: Women’s experiences of stigma. Health Care for Women International, 32(8), 708–722.

    Article  PubMed  Google Scholar 

  8. Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs: Prentice-Hall Inc.

    Google Scholar 

  9. Gray, D. E. (1993). Perceptions of stigma: The parents of autistic children. Sociology of Health & Illness, 15, 102–120.

    Article  Google Scholar 

  10. Gray, D. E. (2002). ‘Everybody just freezes. Everybody is just embarrassed’: Felt and enacted stigma among parents of children with high functioning autism. Sociology of Health & Illness, 24(6), 734–749.

    Article  Google Scholar 

  11. Green, S. (2003). “What do you mean ‘what’s wrong with her?’”: Stigma and the lives of families of children with disabilities. Social Science and Medicine, 57, 1361–1374.

    Article  PubMed  Google Scholar 

  12. Huws, J. C., & Jones, R. S. P. (2010). ‘They just seem to live their lives in their own little world’: Lay perceptions of autism. Disability & Society, 25(3), 331–344.

    Article  Google Scholar 

  13. Link, B. G., & Phelan, J. C. (2001). Conceptualizing stigma. Annual Review of Sociology, 27, 363–385.

    Article  Google Scholar 

  14. Link, B. G., & Phelan, J. C. (2006). Stigma and its public health implications. The Lancet, 367(9509), 528–529.

    Article  Google Scholar 

  15. Lord, C., Rutter, M., DiLavore, P. C., & Risi, S. (1999). Autism Diagnostic Observation System. Los Angeles, CA: Western Psychological Services.

    Google Scholar 

  16. Milacic-Vidojevic, V. I., Gligorovic, M., & Dragojevic, N. (2012). Tendency towards stigmatization of families of a person with autistic spectrum disorders. International Journal of Social Psychiatry, 60(1), 63–70.

    Article  PubMed  Google Scholar 

  17. Neely-Barnes, S. L., Hall, H. R., Roberts, R. J., & Graff, J. C. (2011). Parenting a child with an autism spectrum disorder: Public perceptions and parental conceptualizations. Journal of Family Social Work, 14(3), 208–225.

    Article  Google Scholar 

  18. Woodgate, R. L., Ateah, C., & Secco, L. (2008). Living in a world of our own: The experiences of parents who have a child with autism. Qualitative Health Research, 18(8), 1075–1083.

    Article  PubMed  Google Scholar 

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Acknowledgments

This study—The Implications of Autism Genetic Research and Autism-related Social Stigma—was supported by the Simons Foundation (Award Number 176891). We would like to thank the parents for their generous participation that made this research possible. We acknowledge the Simons Foundation for financial support and the Center for Survey Research at the University of Massachusetts Boston for collaboration in preparing the survey instruments and in all empirical data collection.

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Correspondence to Ruth L. Fischbach.

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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.

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The authors declare that they have no conflict of interest.

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Appendix

Appendix

See Tables 6, 7, 8, 9, 10 and 11.

Table 7 Measures: stereotyped beliefs—competence in social roles (α = 0.84)
Table 8 Measures: stereotyped beliefs about autism causes and characteristics (α = 0.62)
Table 9 Measures: rejection of child by peers (α = 0.81)
Table 10 Measures: family isolation and exclusion and impact on parent’s work hours
Table 11 Measures: overall stigma and difficulty raising child with ASD

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Kinnear, S.H., Link, B.G., Ballan, M.S. et al. Understanding the Experience of Stigma for Parents of Children with Autism Spectrum Disorder and the Role Stigma Plays in Families’ Lives. J Autism Dev Disord 46, 942–953 (2016). https://doi.org/10.1007/s10803-015-2637-9

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Keywords

  • Autism spectrum disorder
  • Stigma
  • Stereotyping
  • Rejection
  • Exclusion
  • Discrimination
  • Scales
  • Regression analysis