Parent experiences and coping processes when raising children with Asperger syndrome: Challenges, turning points and building resilience

This study explored parent experiences and their coping responses raising a child or children with Asperger syndrome, an autism spectrum disorder. A family resilience framework was used to interpret the process of positive adaptations that led to resilience. A disability studies perspective considered how parents reconceptualised what was ‘normal’ as they managed the friction between societal views of difference and their child’s strengths. The chosen methodology was narrative inquiry with a thematic approach to the narrative analysis. Semi-structured interviews were conducted with 25 parents and 1 grandparent of children with Asperger syndrome in New Zealand. This study found families experienced significant stress when raising a child or children with Asperger syndrome and considerable adaptations over the course of their child’s growing up years were made. Four key themes around challenges were identified: the challenges associated with Asperger syndrome, such as their child’s difficult behaviour, social skill difficulties and high sensory sensitivities; challenges arising from a lack of understanding and acceptance in the community that led to stigma and social withdrawal; challenges interacting with health and education services, such as a long medical diagnostic process and inadequate support at school; and challenges to family dynamics that resulted in increased tension between family members. Turning points were identified as part of the process of building resilience as parents successfully managed difficult circumstances at critical junctures in their lives. Positive coping strategies included meaning making, developing resources, planning ahead and solving problems; and strengthening intrapersonal assets. The findings from this study contribute to the theoretical construct of resilience and to the emerging literature on positive adaptations. Implications for practice include encouraging respectful parent and professional relationships; strengthening social support, especially through parent groups; raising parents’ self-efficacy through tailored behavioural strategies for their child; early intervention and targeted school resources; and support at critical times.