PARENTS’ EXPERIENCES IN THE FIRST MONTHS AFTER AN AUTISM OR ADHD DIAGNOSIS: A QUALITATIVE STUDY
DOI:
https://doi.org/10.46306/jas.v5i1.220Keywords:
Autism, ADHD, parental experience, qualitative study, IndonesiaAbstract
This qualitative study explores the lived experiences of Indonesian parents during the first months after their children were diagnosed with Autism Spectrum Disorder (ASD) or Attention-Deficit/Hyperactivity Disorder (ADHD). Six parents (three fathers and three mothers) whose children were diagnosed within the last six months participated in semi-structured in-depth interviews. Reflexive thematic analysis revealed five major themes: (1) emotional turbulence and psychological shock, (2) sociocultural stigma and judgment, (3) overwhelming therapy demands and financial pressures, (4) gradual development of acceptance through knowledge-building and religious coping, and (5) redefinition of parental expectations and reconstruction of parenting identity. Findings align with global literature showing that early post-diagnosis periods are marked by intense emotional, social, and practical adjustments. The Indonesian context adds unique cultural influences, particularly community stigma and strong religious meaning-making. The study highlights the urgent need for early psychoeducation, accessible intervention pathways, and culturally grounded family support systems.
Downloads
References
Amira, N., & Zainal, M. S. (2024). A Systematic Literature Review of Qualitative Studies Exploring Parents’ Experiences Post-Diagnosis of Autism. INTERNATIONAL JOURNAL OF ACADEMIC RESEARCH IN PROGRESSIVE EDUCATION AND DEVELOPMENT.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology. https://doi.org/10.1191/1478088706qp063oa
Brown, L. E., Tallon, M., Kendall, G., Boyes, M., & Myers, B. (2025). Parents’ Experiences of Raising 7-to 11-Year-Old Children With ADHD and Perception of a Proposed Parenting Program: A Qualitative Study. Journal of Attention Disorders, 29(5), 312–325.
DePape, A.-M., & Lindsay, S. (2015). Parents’ experiences of caring for a child with autism spectrum disorder. Qualitative Health Research, 25(4), 569–583.
Fong, V. C., Gardiner, E., & Iarocci, G. (2021). Cross-cultural perspectives on the meaning of family quality of life: Comparing Korean immigrant families and Canadian families of children with autism spectrum disorder. Autism, 25(5), 1335–1348.
Harris, U., Svedberg, P., Aili, K., Nygren, J. M., & Larsson, I. (2022). Parents’ experiences of direct and indirect implications of sleep quality on the health of children with ADHD: A qualitative study. International Journal of Environmental Research and Public Health, 19(22), 15099.
Hughes, R., Curley, K., & Kotera, Y. (2024). Parents’ Experiences after Their Child’s Autism Diagnosis: A Reflexive Thematic Analysis. Psychiatry International, 5(3), 370–394.
Lazarus, R. S., & DeLongis, A. (1983). Psychological stress and coping in aging. American Psychologist, 38(3), 245.
Malhi, P., Shetty, A. R., Bharti, B., & Saini, L. (2022). Parenting a child with autism spectrum disorder: A qualitative study. Indian Journal of Public Health, 66(2), 121–127.
McCubbin, H. I., & Patterson, J. M. (2014). The family stress process: The double ABCX model of adjustment and adaptation. In Social stress and the family (pp. 7–37). Routledge.
Nursanti, S. (2024). Mental health resilience of mothers children with special needs. Hearty, 12(2), 393–400.
Picardi, A., Gigantesco, A., Tarolla, E., Stoppioni, V., Cerbo, R., Cremonte, M., Alessandri, G., Lega, I., & Nardocci, F. (2018). Parental burden and its correlates in families of children with autism spectrum disorder: a multicentre study with two comparison groups. Clinical Practice and Epidemiology in Mental Health: CP & EMH, 14, 143.
Pratama, G. F., & Boediman, L. M. (2025). Religious coping among muslim parents of children with disabilities: a narrative review. Insight: Jurnal Ilmiah Psikologi, 27(2), 122–134.
Sainsbury, W. J., Bowden, C. J., Carrasco, K. D., Whitehouse, A. J. O., & Waddington, H. (2024). Parent experiences of their children’s diagnosis with autism, attention deficit hyperactivity disorder, or both conditions. International Journal of Developmental Disabilities, 70(7), 1173–1183.
Valicenti-McDermott, M., Lawson, K., Hottinger, K., Seijo, R., Schechtman, M., Shulman, L., & Shinnar, S. (2015). Parental stress in families of children with autism and other developmental disabilities. Journal of Child Neurology, 30(13), 1728–1735.
Wang, X., Cui, Y., Wang, M., & Fan, X. (2025). Experiences of Social Support among Foreign Parents Raising Children with Autism Spectrum Disorder in China: A Cross-Cultural Study. International Journal of Disability, Development and Education, 1–20.
Wong, I. Y. T., Hawes, D. J., Clarke, S., Kohn, M. R., & Dar-Nimrod, I. (2018). Perceptions of ADHD among diagnosed children and their parents: A systematic review using the common-sense model of illness representations. Clinical Child and Family Psychology Review, 21(1), 57–93.
Downloads
Published
How to Cite
Issue
Section
License
Copyright (c) 2026 Muhamad Fijar Rotul Akbar
This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.
