Previous research has consistently shown that parents of children with Autism Spectrum Disorder (ASD) experience elevated levels of parenting stress. This is largely due to their children's challenges in communication and social interaction, frequent behavioral issues, and the need for ongoing, specialized care that often comes at high financial cost.
The present study aims to provide an in-depth exploration of the lived experiences of parents raising children with ASD in Indonesia, with a focus on their acceptance process, primary sources of stress, and perceptions of their child's future.
A descriptive qualitative design was employed, utilizing Focus Group Discussions (FGDs) for data collection. Four FGDs were conducted: two held offline at Universitas Indonesia and two conducted online via Zoom. Participants (3-6 per group) were grouped based on the age of their child with ASD to allow for developmental sensitivity in discussion.
Thematic analysis of the data revealed several key themes: (1) receiving an ASD diagnosis as a major turning point in the family's life; (2) the critical role of extended family in emotional and practical support; (3) limited availability and accessibility of therapeutic and healthcare services, particularly outside major urban centers; (4) finding personal growth and meaning through parenting a child with ASD; and (5) religiosity and spiritual beliefs as vital sources of optimism and resilience.
These findings underscore the importance of accessible social support systems for parents of children with ASD, particularly in regions where professional services are scarce. The study also highlights the need for broader structural interventions to improve service delivery and reduce the emotional and financial burden on families.