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Keywords
autism, parental advocates, online self-help groups
Abstract
This paper explores the Internet-based self-help group experiences of 22 parental advocates who have children with autism. The Internet is a particularly useful method for families, who are stretched to the limit for time and resources, to find ways to help their children as well as to establish social supports for themselves. Furthermore, in this study the Internet was found to be a more effective and less restrictive vehicle through which to undertake advocacy work than were face-to-face self-help groups. Positive experiences that arose from Internet-based groups included support, empowerment, and effective strategies for advocacy. Negative experiences included receiving confusing, overwhelming and unreliable information and other disappointing outcomes.
This paper focuses on parental involvement of 22 parents with Internet-based self-help groups for children with autism. Parents with children with autism, a complex disability, express concerns about support and interventions for their children. Experiencing high levels of stress and realizing they could not solve their concerns independently, parents with children with disabilities, since the 1970s, joined self-help groups seeking support, information, and advocacy. The benefits and challenges of self-help group participation are outlined, followed by a consideration of the Internet as a useful self-help group tool for parents to obtain needed information about their children and support for themselves. A qualitative methodology explores the Internet-based self-help group experiences of 22 parents of children with autism. The data examined in this paper was acquired in the process of conducting interviews for a larger study on the experiences of parental advocates in self-help groups for autism (Carter, 2007). While the larger study concentrated on the face-to-face group experiences of education, support, and advocacy, this study made use of superfluous data to explore positive and negative experiences of parental discovery and use of online self-help groups. The positive and negative experiences of the parents are outlined, applying particular attention to the use of the Internet as an effective advocacy tool.
Literature Review
Autism is one of the most common of the severe developmental disorders, and affects 1 in 65 children (Chakrabarti & Fombonne, 2005). It is characterized by delays or abnormal functioning in social interaction, communication and behaviour as well as language, as used in communication, and imaginative play...