“Like something supernatural in your house”: an interpretative phenomenological analysis to explore the experiences and psychological challenges of parents raising children with autism spectrum disorder

Abstract

Background Parents raising children with ASD face profound psychological challenges. While existing research predominantly focuses on parental distress, opportunities for growth and transformation remain underexplored. Addressing these gaps, this study employs an existential framework and Interpretative Phenomenological Analysis to provide a nuanced understanding of parental psychological experiences, emphasizing how they navigate and transcend the challenges of raising a child with ASD. Methods Semi-structured interviews were conducted with four parents (three mothers and one father) of children diagnosed with ASD for at least three years. Participants ranged in age from 31 to 50 years, while their children, all male, were aged 11 to 22 years. The participants represented diverse geographic backgrounds, including Canada, the United Arab Emirates, the United Kingdom, and the United States. Results The analysis identified two superordinate themes: “From Existential Crisis to Enlightenment” and “Transcending Challenging Experiences.” Participants initially experienced an emotional breakdown following their child’s diagnosis, marked by grief and uncertainty. Over time, they transitioned from despair to faith, cultivating acceptance and spiritual beliefs as essential coping mechanisms. They also confronted significant emotional challenges, including guilt, fear of death, and communication struggles, ultimately fostering resilience and forming transcendent relationships with their children. Conclusions The findings illuminate the dual dimensions of the parental experience, encompassing both distress and growth. This study offers deeper insights into the emotional and existential aspects of parenting a child with ASD and underscores the need for tailored interventions to support parents in navigating these transformative journeys