Lived Experiences of Caregivers of Children with Autism: Implications for Clinical Practices

Abstract

This study explored the lived experiences of caregivers supporting children with severe autism spectrum disorder during the transition from late childhood to early adolescence, with emphasis on caregiving demands, coping strategies, and support systems relevant to clinical practice. A qualitative phenomenological design was employed at the Rainbow Intervention Center of Autism Foundation, Inc. in Davao City. Ten purposively selected participants—center-based caregivers and teachers and caregivers of enrolled children—participated in individual in-depth interviews using a validated and pilot-tested interview guide. Data were transcribed, coded, and analyzed thematically until saturation. Three clusters of findings emerged. Caregiving was emotionally demanding and relationally intense, involving emotional strain and attachment, complex behavioral challenges, communication and social difficulties, and disrupted routines with caregiver fatigue. Participants sustained caregiving through emotional self-care, acceptance and meaning-making, structured behavior management, supportive relationships, and a sense of reward and purpose derived from children's progress. They also identified medical and health services, active family involvement, continuous educational and therapeutic support, safe community-based exposure, and financial or government assistance as essential. The findings support integrated, caregiver-inclusive clinical practices that protect caregiver well-being while strengthening continuity, safety, and developmental support during early adolescence.