Publication year
2016
Citation Title
Understanding the experience of stigma for parents of children with autism spectrum disorder and the role stigma plays in families’ lives
Journal Name
Journal of Autism and Developmental Disorders
Journal Volume
46
Issue Number
3
Page Numbers
942-953
DOI
10.1007/s10803-015-2637-9
Summary
Parents of children with autism spectrum disorder (ASD) tend to have experiences and perceptions of stigma. This study built and tested a conceptual model for stigma and surveys parents of children with ASD to explore the pathways of the stigma experience.
Key Findings
Stigma and autism-related behaviors of the child are the largest contributors to the challenges parents of children with ASD face.
Parents reported experiencing stigma with some frequency, including experiences with isolation and exclusion from family and friends.
Stereotypes and peer rejection were found to be associated with stigma but were not found to be directly associated or significant predictors of a parent’s difficulty of having a child with ASD.
Implications for Military Professionals
Partner with other professionals who specialize in ASD to develop curriculum for Service members and their families who may experience stigma
Facilitate support groups for Service members and their families who have children with ASD so as to relieve potential feelings of isolation and exclusion
Implications for Program Leaders
Encourage activities such as journaling and blogging for Service members and families to have a way to process experiences and perceptions constructively
Provide literature to community organizations to raise awareness about stigma, ASD, and military life
Implications for Policy Makers
Recommend professional development for those working with Service members and children with ASD
Promote programs that are providing educational materials and information about stigma and ASD
Methods
The Interactive Autism Network at the Simons Foundation Autism Research Initiative sent mailers to its 1,460 participants-parents with one child with ASD-and a final random sample of 554 was selected.
Focus groups and interviews were held to identify focus areas for the study’s survey, which was cognitively tested, piloted with 20 individuals, and finalized for phone surveys lasting 20-30 minutes.
Measures included: child’s autism-related behaviors, parent’s perception of public stereotypes, autism causes and characteristics, frequency of rejection of child by peers, isolation from friends and family, overall assessment of difficulty of stigma in parent’s lives, and general stigma-related questions.
Participants
Participants included 502 parents in the Interactive Autism Network, a 91% response rate.
Almost all participants (95%) were mothers between 28 and 65 years old (M = 43.7, SD = 5.36) and most (70%) were college graduates with 82% being White and 84% having at least one additional child.
Of the children with ASD, most were male (86%, with a 6:1 ratio boys to girls), 88% were verbal and 97% were enrolled in school.
Limitations
The study was cross-sectional, making causation difficult to assess, which is important to the testing of directionality in the study’s conceptual model.
The sample was homogenous in terms of race and educational attainment, which makes generalizability difficult and may not represent how different groups experience stigma.
There were few fathers in the study and it is unclear how fathers of children with ASD experience stigma compared to the vast majority of mothers in the study.
Avenues for Future Research
Explore a longitudinal design to examine how parents of a child with ASD experience stigma over time
Expand the sample to include more diversity in race and educational attainment as there may be different factors in the social components of stigma that may be experienced differently
Study how fathers perceive stigma as a parent of a child with ASD as well as studying parent dyads to see whether and how they perceive stigma as a couple
Focus
Civilian
Population Focus
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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