The lived experience of parenting a child with autism in a rural area: making the invisible, visible

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Hoogsteen, Lindsey
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A phenomenological study was conducted to understand the lived experience of parents parenting a child with autism in a rural area. The philosophy of hermeneutic phenomenology was used to guide this inquiry. Interviews of 26 families served as primary data. Thematic statements were isolated using van Manen’s (1990) selective highlighting approach. Making the invisible, visible emerged as the essence of the parents’ experience. Parents shared that although autism is an invisible disability, they in fact made it visible in their constant battles to ensure their child received the best quality of life. Five themes represented this essence: using autism to enable, lifelong advocating, centering autism within the family, the ups and downs of living rurally, and a renewed sense of parenting. Findings from this study may be used to guide program development that is concerned with improving the quality of life families of children with autism.
autism, paediatrics, nursing