title: 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.
authors.affiliation: Department of Psychiatry, Center for Bioethics, Columbia University College of Physicians and Surgeons, 630 West 168th Street, Box 161, New York, NY, 10032, USA.|The Chartis Group, New York, NY, USA.
authors.forename: Sydney H
authors.initials: SH
authors.lastname: Kinnear
authors.affiliation: Department of Epidemiology, Columbia University Mailman School of Public Health, 722 West 168th Street, Room 1609, New York, NY, 10032, USA.|Department of Sociomedical Sciences, Columbia University Mailman School of Public Health, 722 West 168th Street, Room 1609, New York, NY, 10032, USA.|UC Riverside, Riverside, CA, USA.
authors.forename: Bruce G
authors.initials: BG
authors.lastname: Link
authors.affiliation: Silberman School of Social Work at CUNY Hunter College, 2180 3rd Avenue, New York, NY, 10035, USA.|Columbia University School of Social Work, New York, NY, USA.
authors.forename: Michelle S
authors.initials: MS
authors.lastname: Ballan
authors.affiliation: Department of Psychiatry, Center for Bioethics, Columbia University College of Physicians and Surgeons, 630 West 168th Street, Box 161, New York, NY, 10032, USA. rf416@columbia.edu.|Department of Sociomedical Sciences, Columbia University Mailman School of Public Health, 722 West 168th Street, Room 1609, New York, NY, 10032, USA. rf416@columbia.edu.
authors.forename: Ruth L
authors.initials: RL
authors.lastname: Fischbach
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000067877:Autism Spectrum Disorder / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D005195:Family Relations / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D008960:Models, Psychological; D010290:Parents / Q000523:psychology*; D057545:Social Stigma
keywords: Autism spectrum disorder; Discrimination; Exclusion; Regression analysis; Rejection; Scales; Stereotyping; Stigma