Understanding Delayed Autism Diagnosis in Pakistan: A Qualitative Study of Caregiver Experiences
Abstract
Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder for which early diagnosis is critical to long-term developmental outcomes. Yet children in Pakistan frequently receive a formal diagnosis well beyond the developmental window in which intervention is most effective. This qualitative study examined the factors contributing to delayed diagnosis of ASD in Pakistan, drawing on the lived experiences of eight caregivers (parents and grandparents) recruited using purposive sampling. Data were gathered using in-depth, semi-structured interviews and analyzed using Reflexive Thematic Analysis (Braun & Clarke, 2006, 2019)—a framework with Bronfenbrenner's Ecological Systems Theory and the Health Belief Model as guides. The analysis revealed seven themes, which included: Family dynamics and denial, Healthcare System Inadequacies, Help Seeking Difficulties, Limited Resources and Accessibility, Maternal wellbeing, Parent knowledge and Awareness, and Sociocultural influences. Diagnostic delay in Pakistan was identified as a combination of family, institutional, and cultural barriers, not one particular factor, and health-care experiences that were supposed to reassure the parents sometimes actively delayed the recognition of developmental concerns. These findings suggest that addressing diagnostic delay in Pakistan requires attention to family dynamics, healthcare provider communication, and sociocultural stigma, with implications for clinical screening protocols and public health messaging.
Keywords
Autism Spectrum Disorder, Neurodevelopmental Disorder, Delayed Diagnosis, Early Identification, Qualitative Research
References
- Akram, M., Naqvi, S. M. Z. H., & Jameel, N. (2025). Relationship between children’s autism spectrum disorder and parental anxiety and burnout. Pakistan Journal of Medical Sciences, 41(2), 366–371. https://doi.org/10.12669/pjms.41.2.9979
- Alam, S. A. (2023). Restoring personhood through peer hosting: The Peers Immigration Rehabilitation Module (PIRM) as a scalable rehabilitation model for immigrants and refugees. International Journal of Academic Research for Humanities, 3(4), 325–331. https://jar.bwo-researches.com/index.php/jarh/article/view/113
- Alam, S. A. (2024). Parental Internship Module (PIM): A comprehensive framework for restoring natural learning hierarchies from early childhood to professional career. International Journal of Academic Research for Humanities, 4(1), 181–191. https://jar.bwo-researches.com/index.php/jarh/article/view/252
- American Psychiatric Association. (2022). Diagnostic and statistical manual of mental disorders (5th ed., text rev.; DSM-5-TR). American Psychiatric Association Publishing.
- Asta, L., & Persico, A. M. (2022). Differential predictors of response to Early Start Denver Model vs. early intensive behavioral intervention in young children with autism spectrum disorder: A systematic review and meta-analysis. Brain Sciences, 12(11), 1499. https://doi.org/10.3390/brainsci12111499
- Battanta, N. K., Jenni, O. G., Schaefer, C., & von Rhein, M. (2024). Autism spectrum: Parents’ perspectives reflecting the different needs of different families. BMC Pediatrics, 24, 439. https://doi.org/10.1186/s12887-024-04912-x
- Becker, M. H. (1974). The health belief model and sick role behavior. Health Education Monographs, 2(4), 409–419. https://doi.org/10.1177/109019817400200407
- Bertelli, M. O., Azeem, M. W., Underwood, L., Scattoni, M. L., Persico, A. M., Ricciardello, A., Sappok, T., Bergmann, T., Keller, R., Bianco, A., Corti, S., Miselli, G., Lassi, S., Croce, L., Bradley, E., & Munir, K. (2022). Autism spectrum disorder. In M. O. Bertelli, S. Deb, K. Munir, A. Hassiotis, & L. Salvador-Carulla (Eds.), Textbook of psychiatry for intellectual disability and autism spectrum disorder (pp. 369–455). Springer. https://doi.org/10.1007/978-3-319-95720-3_16
- Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
- Braun, V., & Clarke, V. (2019). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589–597. https://doi.org/10.1080/2159676X.2019.1628806
- Bronfenbrenner, U. (1979). The ecology of human development: Experiments by nature and design. Harvard University Press. https://doi.org/10.4159/9780674028845
- Bronfenbrenner, U. (1994). Ecological models of human development. In T. Husen & T. N. Postlethwaite (Eds.), International encyclopedia of education (2nd ed., Vol. 3, pp. 1643–1647). Pergamon Press/Elsevier Science.
- Carter, E. D., Stewart, D. E., Rees, E. E., Bezuidenhoudt, J. E., Ng, V., Lynes, S., Desenclos, J. C., Pyone, T., & Lee, A. C. K. (2024). Surveillance system integration: Reporting the results of a global multicountry survey. Public Health, 231, 31–38. https://doi.org/10.1016/j.puhe.2024.03.004
- Chachar, A. S., & Mian, A. I. (2022). A review of the intersection of social determinants and child and adolescent mental health services: A case for social psychiatry in Pakistan. World Social Psychiatry, 4(2), 69–77.
- Croizet, J. C., & Millet, M. (2024). How preschool education perpetuates social inequality: An ethnographic study of the practical conditions of symbolic violence. Journal of Social Issues, 80(4), 1345–1378.
- Fisher, A. P., Lynch, J. D., Jacquez, F. M., Mitchell, M. J., Kamimura-Nishimura, K. I., & Wade, S. L. (2023). A systematic review examining caregivers of color's experiences with the diagnostic process of autism spectrum disorder. Autism, 27(4), 876–889. https://doi.org/10.1177/13623613221128171
- Fisher, K. R., & Purcal, C. (2017). Policies to change attitudes to people with disabilities. Scandinavian Journal of Disability Research, 19(2), 161–174. https://doi.org/10.1080/15017419.2016.1222303
- Guest, G., Bunce, A., & Johnson, L. (2006). How many interviews are enough? An experiment with data saturation and variability. Field Methods, 18(1), 59–82. https://doi.org/10.1177/1525822X05279903
- Hirota, T., & King, B. H. (2023). Autism spectrum disorder: A review. JAMA, 329(2), 157–168. https://doi.org/10.1001/jama.2022.23661
- Hossain, M. D., Ahmed, H. U., Jalal Uddin, M. M., Chowdhury, W. A., Iqbal, M. S., Kabir, R. I., Chowdhury, I. A., Aftab, A., Datta, P. G., Rabbani, G., Hossain, S. W., & Sarker, M. (2017). Autism spectrum disorders (ASD) in South Asia: A systematic review. BMC Psychiatry, 17, 281. https://doi.org/10.1186/s12888-017-1440-x
- https://doi.org/10.1007/s10803-010-1068-x
- 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. https://doi.org/10.3390/psychiatryint5030026
- Hus, Y., & Segal, O. (2021). Challenges surrounding the diagnosis of autism in children. Neuropsychiatric Disease and Treatment, 17, 3509–3529. https://doi.org/10.2147/NDT.S282569
- Imran, N., Chaudry, M. R., Azeem, M. W., Bhatti, M. R., Choudhary, Z. I., & Cheema, M. A. (2011). A survey of autism knowledge and attitudes among the healthcare professionals in Lahore, Pakistan. BMC Pediatrics, 11, 107. https://doi.org/10.1186/1471-2431-11-107
- Iqbal, K., Afzal, I., & Hafsah. (2024). Status of Quranic education for visually impaired students in special education schools. International Journal of Academic Research for Humanities, 4(2), 130–144. https://doi.org/10.5281/zenodo.11644195
- Kamila, G., & Gulati, S. (2023). Navigating the frontiers in childhood neurodevelopmental disorders: Unravelling challenges in South-East Asia. WHO South-East Asia Journal of Public Health, 12(2), 81–84. https://doi.org/10.4103/WHO-SEAJPH.WHO-SEAJPH_35_23
- Khaliq, F., Tufail, M. W., Ali, H., & Khalid, W. (2025). Challenges faced by parents raising children with autism spectrum disorder: A qualitative study in Pakistan. ACADEMIA International Journal for Social Sciences, 4(3), 4047–4062. https://doi.org/10.63056/ACAD.004.03.0684
- Khudiakova, V., Sin, J., Suzuki, M., & Barnicot, K. (2026). Lived experience, family, and clinician perspectives on barriers to adult autism diagnosis and post-diagnostic supports: A mixed-methods systematic review. Journal of Developmental and Physical Disabilities, 38(5), 979–1018. https://doi.org/10.1007/s10882-026-10055-x
- Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Sage Publications.
- Lord, C., Brugha, T. S., Charman, T., Cusack, J., Dumas, G., Frazier, T., Jones, E. J. H., Jones, R. M., Pickles, A., State, M. W., Taylor, J. L., Volkmar, F. R., Veenstra-VanderWeele, J., & McCauley, J. B. (2020). Autism spectrum disorder. Nature Reviews Disease Primers, 6(1), 5. https://doi.org/10.1038/s41572-019-0138-4
- Maich, K., Penney, S. C., Alves, K., & Hall, C. (2020). Autism spectrum disorder in the Canadian context: An introduction. Canadian Scholars.
- Matos, M. B., Bara, T. S., & Cordeiro, M. L. (2022). Autism spectrum disorder diagnoses: A comparison of countries with different income levels. Clinical Epidemiology, 14, 959–969. https://doi.org/10.2147/CLEP.S373186
- McKean, C., & Reilly, S. (2023). Creating the conditions for robust early language development for all: Part two: Evidence-informed public health framework for child language in the early years. International Journal of Language & Communication Disorders, 58(6), 2242–2264. https://doi.org/10.1111/1460-6984.12970
- Munawar, A., & Abbas, N. (2025). Experiences of parents raising a child with autism spectrum disorder in Pakistan. Contemporary Journal of Social Science Review, 3(4), 542–548. https://doi.org/10.63878/cjssr.v3i4.1636
- O’Neill, S., & O’Donnell, G. M. (2024). Identifying autistic children: Priorities for research arising from a systematic review of parents’ experiences of the assessment process. Autism, 28(11), 2738–2753. https://doi.org/10.1177/13623613241243107
- Ozonoff, S., Young, G. S., Brian, J., Charman, T., Shephard, E., Solish, A., & Zwaigenbaum, L. (2018). Diagnosis of autism spectrum disorder after age 5 in children evaluated longitudinally since infancy. Journal of the American Academy of Child & Adolescent Psychiatry, 57(11), 849–857.e2. https://doi.org/10.1016/j.jaac.2018.06.022
- Rahbar, M. H., Ibrahim, K., & Assassi, P. (2011). Knowledge and attitude of general practitioners regarding autism in Karachi, Pakistan. Journal of Autism and Developmental Disorders, 41(4), 465–474.
- Rashid, M., Anjum, F. A., Nazir, S., Ahmad, T., & Fayyaz, M. U. (2025). Psychological distress and quality of life among parents of children with autism spectrum disorder: Social support as a mediating role. Regional Lens, 4(4), 204–211. https://doi.org/10.55737/rl.2025.44145
- Riaz, S., & Zaka, J. (2026). Challenges in autism diagnosis and intervention in Pakistan: Insights from parents. Qlantic Journal of Social Sciences and Humanities, 7(1), 264–271. https://doi.org/10.55737/qjssh.vii-i.26484
- Rogers, S. J. (2000). Diagnosis of autism before the age of 3. In L. M. Glidden (Ed.), International review of research in mental retardation (Vol. 23, pp. 1–31). Academic Press. https://doi.org/10.1016/S0074-7750(00)80004
- Rosenstock, I. M. (1966). Why people use health services. The Milbank Memorial Fund Quarterly, 44(3, Part 2), 94–127. https://doi.org/10.2307/3348967
- Russell, A. S., McFayden, T. C., McAllister, M., Liles, K., Bittner, S., Strang, J. F., & Harrop, C. (2025). Who, when, where, and why: A systematic review of “late diagnosis” in autism. Autism Research, 18(1), 22–36. https://doi.org/10.1002/aur.3278
- Salman, F., Arshad, T., & Sitwat, A. (2024). Breaking the myths: Understanding the challenges of caregivers of autism in Pakistan—A systematic review. Journal of Professional & Applied Psychology, 5(4), 677–696. https://doi.org/10.52053/jpap.v5i4.328
- Saunders, B., Sim, J., Kingstone, T., Baker, S., Waterfield, J., Bartlam, B., Burroughs, H., & Jinks, C. (2018). Saturation in qualitative research: Exploring its conceptualization and operationalization. Quality & Quantity, 52(4), 1893–1907. https://doi.org/10.1007/s11135-017-0574-8
- Shenton, A. K. (2004). Strategies for ensuring trustworthiness in qualitative research projects. Education for Information, 22(2), 63–75. https://doi.org/10.3233/EFI-2004-22201
- Smith, J., Aulich, A., Bent, C., Constantine, C., Franks, K., Goonetilleke, N., Green, C., Ijaz, R., Patel, K., Said, H., Wood, S., & Hudry, K. (2024). “We go through trauma”: South Asian parents’ experiences of autism diagnosis and early supports for their autistic children in Australia. Research in Autism Spectrum Disorders, 114, 102408. https://doi.org/10.1016/j.rasd.2024.102408
- Smith-Young, J., Pike, A., Swab, M., & Chafe, R. (2025). Parents' and guardians' experiences of barriers and facilitators in accessing autism spectrum disorder diagnostic services for their children: A qualitative systematic review. JBI Evidence Synthesis, 23(1), 6–68. https://doi.org/10.11124/JBIES-23-00332
- Stahmer, A. C., Vejnoska, S., Iadarola, S., Straiton, D., Segovia, F. R., Luelmo, P., Morgan, E. H., Lee, H. S., Javed, A., Bronstein, B., Hochheimer, S., Cho, E., Aranbarri, A., Mandell, D., Hassrick, E. M., Smith, T., & Kasari, C. (2019). Caregiver voices: Cross-cultural input on improving access to autism services. Journal of Racial and Ethnic Health Disparities, 6(4), 752–773. https://doi.org/10.1007/s40615-019-00575-y
- Tegtmejer, T., & Säljö, R. (2024). Paradoxes of using psychiatric diagnoses as organising principles for special educational support. European Journal of Special Needs Education, 39(4), 519–533. https://doi.org/10.1080/08856257.2023.2242029
- Wilson, R. B., Thompson, A. R., Rowse, G., & Freeth, M. (2023). The experience of seeking, receiving, and reflecting upon a diagnosis of autism in the UK: A meta-synthesis of qualitative studies conducted with autistic individuals. Research in Autism Spectrum Disorders, 103, 102135. https://doi.org/10.1016/j.rasd.2023.102135
- Yasir, H., Nazir, M. M., & Naseer, M. N. (2025). Early identification of autism spectrum disorder in rural Pakistan: Barriers and strategies for timely diagnosis. Advance Social Science Archive Journal, 4(1), 3258–3268.
- Zavaleta-Ramírez, P., Rosetti, M. F., Albores-Gallo, L., Vargas-Soberanis, M. A., Nafate López, O., & Medina-Mora, M. E. (2020). Pathways to a diagnosis of autism spectrum disorder. Psychiatric Services, 71(11), 1120–1126. https://doi.org/10.1176/appi.ps.201900518
- Zener, D. (2019). Journey to diagnosis for women with autism. Advances in Autism, 5(1), 2–13. https://doi.org/10.1108/AIA-10-2018-0041
- Zhu, H., Yan, H. K., Ye, J., Li, Y., Xiao, L., Yu, Z., Wang, X., & Li, X. (2026). The pathway of early detection, diagnosis, and intervention for autistic children: A multi-center mixed-methods study. Pediatric Research. https://doi.org/10.1038/s41390-026-04843-6
- Zuckerman, K. E., Sinche, B., Cobian, M., Cervantes, M., Mejia, A., Becker, T., & Nicolaidis, C. (2014). Conceptualization of autism in the Latino community and its relationship with early diagnosis. Journal of Developmental & Behavioral Pediatrics, 35(8), 522–532. https://doi.org/10.1097/DBP.0000000000000091