Internalization of stigma for parents of children with autism spectrum disorder in Hong Kong

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Abstract

An attribution model was tested to explain the internalization of stigma among parents of children with Autism Spectrum Disorder (ASD). In the model, the internalization paths from courtesy stigma to affiliate stigma and the impact of three types of social support on affiliate stigma and psychological well-being were examined. The study was conducted in Hong Kong, China; one hundred and eighty-eight parents of children with ASD were recruited to complete the questionnaire. The model showed excellent fit to the data. Path analysis suggested three possible paths of internalizing courtesy stigma, including the direct path to affiliate stigma, through perceived controllability, or through perceived responsibility and self-blame. Support from family, significant others, friends, or professionals was found to be related to affiliate stigma and psychological well-being differentially. The internalization of stigma among parents of ASD children was severe. The path model sheds light on possible ways to reduce stigma in future services.

Section snippets

Stigmatized autistic features and the local context

According to the DSM-IV-TR (APA, 2000), the diagnostic features of Autism Spectrum Disorder (ASD) include impaired social interactions, impaired communication, as well as restricted, repetitive, and stereotyped behavior patterns. Among people with mental illness, those who lack proper social skills and perform inappropriate affective behaviors are considered impolite and dangerous (Pugliesi, 1987). As such, their parents are often subjected to stigma due to the public’s misconception of their

Parents of children with autism

Among parents raising children with disabilities such as intellectual disability, cerebral palsy, genetic and chromosomal disorders, parents of children with autism report significantly higher levels of stress and dysphoria (Dumas et al., 1991, Sanders and Morgan, 1997), significantly lower well-being (Blacher & Mclntyre, 2006) and are more likely to experience depression (Olsson & Hwang, 2001). One of the underlying sources of caregiving stress is the frequency and breadth of children’s

Internalization of affiliate stigma using the attribution model

The experience of stigmatization among parents with children with autism may be very complex, as it involves biological differences of the children, the negative evaluation of those differences by others, adverse reactions of others, and negative social and emotional outcomes for parents (Green, Davis, Karshmer, Marsh, & Straight, 2005). The present study extended previous studies by conceptualizing parents’ internalization of courtesy stigma using the attribution model (Weiner, 1993).

Perceived support & stigma

Social support was included in the model because of its known protective value (Vandervoort, 1999). Among parents of children with autism, perceived social support was found to be negatively related to adverse financial, social, emotional, and physical burden (Bishop, Richler, Cain, & Lord, 2007). In the present study, the effects of support from helping professionals, family, friends, and significant others on affiliate stigma and well-being were examined separately as previous studies

Overview of the present study

The present study proposed an integrated model investigating the relationships between social support, affiliate stigma and psychological well-being among parents of children with autism. The aims of the present study are to: (1) examine the internalization process from courtesy stigma to affiliate stigma among parents of children with autism using the attributions of perceived controllability, perceived responsibility, and self-blame; (2) investigate the negative impact of three types of

Sampling

Chinese parents of children with Autism Spectrum Disorder were recruited through non-governmental organizations (NGOs) and special schools from November 2008 to March 2009. Invitation letters are sent to all NGOs and special schools listed on the webpage of Autism Hong Kong. Participation was voluntary and informed consent was sought. Ten NGOs and two special schools agreed to participate. After NGOs and schools got the consent from the parents, parents’ addresses are given to us.

Preliminary analysis

In general, few significant correlations were found between demographic variables and the model variables. Exceptions included correlations between child’s age and affiliate stigma (r = .16) and perceived controllability (r = −.17), parent’s age and perceived controllability (r = −.27), child with intellectual disability and affiliate stigma (r = .20), child receiving professional help and professional support (r = .20), and knowledge of ASD and perceived responsibility and self-blame (r

Discussion

The present study used the attribution model to test the process by which parents internalize stigma as a result of experiencing stigma through association with their children with autism. Results found that parents internalized courtesy stigma, directly, through perceived controllability, and through perceived responsibility and self-blame. Thus there were three routes by which courtesy stigma translated into affiliate stigma; two depended on attributions as found previously (Mak & Wu, 2006).

Acknowledgements

We would like to express our heartfelt thanks to (in alphabetical order) Autism Partnership Foundation, Caritas Hong Kong, Mary Rose School, Society for the Autistic Persons, The Boys’ & Girls’ Clubs Association of Hong Kong (Wan Chai, Tai Wai, and Lok Man centers), The Heaven of Hope, The Intellectually Disabled Education and Advocacy League, The Parents’ Association of Pre-school Handicapped Children, The Salvation Army Hong Kong Command, Tuen Mun Yuk Chi Resource Centre, and TWGHs Kwan Fong

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