Understanding the Experience of Stigma for Parents of Children with Autism Spectrum Disorder and the Role Stigma Plays in Families’ Lives (original) (raw)
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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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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Author notes
- Michelle S. Ballan
Present address: Silberman School of Social Work at CUNY Hunter College, 2180 3rd Avenue, New York, NY, 10035, USA - Sydney H. Kinnear
Present address: The Chartis Group, New York, NY, USA - Bruce G. Link
Present address: UC Riverside, Riverside, CA, USA
Authors and Affiliations
- Department of Psychiatry, Center for Bioethics, Columbia University College of Physicians and Surgeons, 630 West 168th Street, Box 161, New York, NY, 10032, USA
Sydney H. Kinnear & Ruth L. Fischbach - Department of Epidemiology, Columbia University Mailman School of Public Health, 722 West 168th Street, Room 1609, New York, NY, 10032, USA
Bruce G. Link - Department of Sociomedical Sciences, Columbia University Mailman School of Public Health, 722 West 168th Street, Room 1609, New York, NY, 10032, USA
Bruce G. Link & Ruth L. Fischbach - Columbia University School of Social Work, New York, NY, USA
Michelle S. Ballan
Authors
- Sydney H. Kinnear
You can also search for this author inPubMed Google Scholar - Bruce G. Link
You can also search for this author inPubMed Google Scholar - Michelle S. Ballan
You can also search for this author inPubMed Google Scholar - Ruth L. Fischbach
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Corresponding author
Correspondence toRuth L. Fischbach.
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Ethical Statement
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.
Conflict of interest
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
- Published: 11 December 2015
- Issue Date: March 2016
- DOI: https://doi.org/10.1007/s10803-015-2637-9