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


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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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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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.

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The authors declare that they have no conflict of interest.

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