Quality of life for children with Asperger
Syndrome: Parental perspectives
Ann Fudge Schormans, Rebecca Renwick, Renée Ryan,
and HeeSun Lim
Is a good quality of life for children easily achieved? What is required for a “good” quality of life? What if having Asperger Syndrome (AS) complicates a child's quality of life? Until now, there has been no known research specifically examining quality of life issues for children with AS, although issues relevant to “quality of life”, but not necessarily conceptualized as such, are found in literature.
Clinical experience and research reveal that children with AS typically experience a vast array of difficulties in their lives that have the potential to affect their quality of life. The social, emotional, behavioural, and cognitive characteristics of AS affect the child's social and academic performance (Myles and Simpson 2002). Being socially isolated, friendless, shunned and victimized by peers (Broderick et al. 2002; Little 2002; Foster and King 2003) may result in “emotional stress associated with the basic need to belong” (Carrington and Graham 2001, p.44) and short- and long-term negative health outcomes (Little 2002). Problems with communication, sensory sensitivities, and motor deficits may make this group of children more vulnerable to developing various problems, including low self-esteem and depressive symptomatology (Myles and Simpson 2002; Foster and King 2003). Parents of children with AS cite a lack of social supports, resources, specialized services, and professional training or understanding of AS (Carrington and Graham 2001; Little 2002; Myles and Simpson 2002).
This chapter reports on a qualitative research study examining quality of life for children with AS. Following a brief discussion of how “quality of life” has