The experience of Singaporean caregivers with a child diagnosed with autism spectrum disorder and challenging behaviours

Abstract

This qualitative study presents an in-depth and idiographic analysis of the lived experience of parent-caregivers with a child diagnosed with autism spectrum disorder (ASD) who exhibits challenging behaviours. Semi-structured interviews were conducted with six parents of children with ASD and who met the Child Behaviour Checklist for Ages 6–18 (CBCL/6–18) Total Problems T score of 60 and above. The interviews were conducted at a child and adolescent psychiatry clinic in Singapore. Transcripts were analysed using interpretative phenomenological analysis. Two dominant themes emerged: sense of responsibility and renewed appreciation of self. The caregivers’ sense of responsibility not only encompassed parental duty, spousal duty but also duty to the community. Through the process of meaning making and coordinating actions with their child, spouse and social relations, over time the caregivers developed a deeper appreciation of their personal strengths and resourcefulness. The findings suggest that clinical practice and future research would benefit from a family resilience perspective in understanding caregivers’ experience.