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Sadia Mushtaq
Sadaf Arif
Farheen Anjum
Rabia Mir
Kamran Shahzad
Mehwish Siddiqui


Autism, Parenting, Challenges, Diagnosis, Treatment, Behavioral issues


Parenting a kid with autism spectrum disorder (ASD) is a complex set of challenges for women, including concerns about behavioral and mental issues, and social stigma. The prevalence of ASD is widespread in Pakistan and its management is mostly overlooked. This phenomenological study seeks to investigate and comprehend the daily life experiences of mothers raising children with Autism Spectrum Disorder (ASD). The data is collected using semi-structured interviews. The sample size (N=10) is determined by achieving of saturation. The finding highlight four main themes, includes, Pre-Diagnosis Concerns, Reaction after Diagnosis, Challenges of Parenting, and Positive Aspect of Pakistani Culture. The theme of Pre-Diagnosis Concerns encompasses three distinct subthemes consisting of Pre-Diagnosis Maternal Recognition, Behavioral Observations and Knowledge Gaps. This theme explores the interplay between maternal instincts, observable behaviors of child with ASD, and the gaps in understanding the diagnosis process, offering valuable insights into early detection and intervention strategies. The second theme “Reaction towards Diagnosis” incudes subthemes of Delay in Diagnosis, Reaction to Diagnosis and Hunting for Management Assistance. This aspect explains the reactions and behaviors of parental of children with ASD engage in after receiving a diagnosis, illuminating the proactive, emotional, and temporal aspects of the diagnostic process. The third theme “Challenges of Parenting” includes Sacrifices and Struggles of Mothers, Financial Strain, Treatment Services, Social Stigma, Rejection from Family, Treatment services, and Positive Aspect of Pakistani Culture. This theme describes the range of obstacles encountered by parents of child with ASD. The forth theme “Positive Aspect of Pakistani Culture” include subthemes of Support from family members and Support from Spouse. This highlights deeply embedded Pakistani society norms and shed light on the strong networks of family and spouse that is a great support and encourage resiliency and unity in the face of adversity. Pakistani mothers who have children with ASD experience a variety of problems, including physical, psychological, emotional, and social difficulties, as well as a lack of specialist resources. Identifying their specific issues and requirements is critical for assisting them, providing appropriate services and resources, and developing rules and guidelines for culturally competent quality services.

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1. Achour, M., Bensaid, B., & Nor, M. R. B. M. (2016). An Islamic perspective on coping with life stressors. Applied Research in Quality of Life, 11(3), 663-685. https://doi.org/10.1007/ s11482-015-9389-8
2. American Psychiatric Association. (2018, August). What is autism
3. Angell, M. E., Meadan, H., & Stoner, J. B. (2012). Experiences of siblings of individuals with autism spectrum disorders. Autism Research and Treatment, 2012, Article 949586. https://doi. org/10.1155/2012/949586
4. Baio, J., Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z., Kurzius-Spencer, M., Zahorodny, W., Robinson Rosenberg, C., White, T., Durkin, M. S., Imm, P., Nikolaou, L., Yeargin-Allsopp, M., Lee, L.-C., Harrington, R., Lopez, M., Fitzgerald, R. T., Hewitt, A., . . . Dowling, N. F. (2018). Prevalence of autism spectrum disorder among children aged 8 years—Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2014. Morbidity and Mortality Weekly Report Surveillance Summaries, 67(6), 1-23. https://doi.org/10.15585/mmwr.ss6706a1
5. Buescher, A. V., Cidav, Z., Knapp, M., & Mandell, D. S. (2014). Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA pediatrics, 168(8), 721-728.
6. Burkett, K., Morris, E., Anthony, J., Shambley-Ebron, D., & Manning-Courtney, P. (2017). Parenting African American children with autism: The influence of respect and faith in mother, father, single-, and two-parent care. Journal of Transcultural Nursing, 28(5), 496-504. https://doi.org/10.1177 /1043659616662316
7. Burkett, K., Morris, E., Manning-Courtney, P., Anthony, J., & Shambley-Ebron, D. (2015). African American families on autism diagnosis and treatment: The influence of culture. Journal of Autism and Developmental Disorders, 45(10), 3244-3254. https://doi.org/10.1007/s10803-015-2482-x
8. Centers for Disease Control and Prevention. (2013). CDC—Data and Statistics, Autism Spectrum Disorders—NCBDDD.
9. Chan, K. K. S., & Lam, C. B. (2018). Self-stigma among par- ents of children with autism spectrum disorder. Research in Autism Spectrum Disorders, 48(April), 44-52. https://doi.org /10.1016/j.rasd.2018.01.001
10. Chao, K., Chang, H., Chin, W., Li, H., & Chen, S. (2018). How Taiwanese parents of children with autism spectrum disorder experience the process of obtaining a diagnosis: A descriptive phenomenological analysis. Autism, 22(4), 388-400. https:// doi.org/10.1177/1362361316680915
11. Corcoran, J., Berry, A., & Hill, S. (2015). The lived experience of US parents of children with autism spectrum disorders: A systematic review and meta-synthesis. Journal of Intellectual Disabilities, 19(4), 356-366. https://doi.org/10.1177/17446 29515577876
12. DePape, A.-M., & Lindsay, S. (2015). Parents’ experiences of caring for a child with autism spectrum disorder. Qualitative Health Research, 25(4), 569-583. https://doi.org/10.1177 /1049732314552455
13. Estes, A., Swain, D. M., & MacDuffie, K. E. (2019). The effects of early autism intervention on parents and family adaptive functioning. Pediatric Medicine, 2(21). https://doi.org/10.21037/ pm.2019.05.05
14. Gobrial, E. (2018). The lived experiences of mothers of children with the autism spectrum disorders in Egypt. Social Sciences, 7(8). https://doi.org/10.3390/socsci7080133
15. Gona, J. K., Newton, C. R., Rimba, K. K., Mapenzi, R., Kihara, M., Vijver, F. V., & Abubakar, A. (2016). Challenges and cop- ing strategies of parents of children with autism on the Kenyan coast. Rural and Remote Health, 16(2), Article 3517. https:// www.rrh.org.au/journal/article/3517
16. Hermawati, D., Rahmadi, F. A., Sumekar, T. A., & Winarni, T. I. (2018). Early electronic screen exposure and autistic-like symptoms. Intractable and Rare Diseases Research, 7(1), 69-71. https://doi.org/10.5582/irdr.2018.01007
17. Hoogsteen, L., & Woodgate, R. L. (2013). The lived experiences of parenting a child with autism in a rural area: Making the invis- ible, visible. Pediatric Nursing, 39(5), 233-237.
18. 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(1), 1-6.
19. International Labour Office. (2018). Young women’s employment and empowerment in the rural economy Investing in rural people—Jordan. http://dosweb.dos.gov.jo
20. Lee, H., & Fong, E. H. (2018). Sociocultural perspective on autism intervention. In M. Fitzgerald & J. Yip (Eds.), Autism: Paradigms, recent research and clinical applications (pp. 290- 300). INTECH. https://doi.org/10.5772/65965
21. Li, T.-Y., & Lo, J.-L. (2016). The predictors of uncertainty in mothers of children with autism spectrum disorder. Children’s Health Care, 45(2), 147-164. https://doi.org/10.1080/0273961 5.2014.979924
22. Lin, L. Y., Cherng, R. J., Chen, Y. J., Chen, Y. J., & Yang, H. M. (2015). Effects of television exposure on developmental skills among young children. Infant Behavior and Development, 38, 20-26. https://doi.org/10.1016/j.infbeh.2014.12.005
23. Maqbool, S., Malik, U., & Zahid, M. (2021). Prevalence of Autism Spectrum Disorder and Associated Factors Among Children Aged 18-48 Months in Lahore, Pakistan. Cureus, 13(1), e12699.
24. Matenge, B. (2012). An exploration of the lived experiences of mothers raising children with autism. University of Cape Town.
25. Maulik, P. K., Mascarenhas, M. N., Mathers, C. D., Dua, T., & Saxena, S. (2011). Prevalence of intellectual disability: a meta-analysis of population-based studies. Research in developmental disabilities, 32(2), 419-436.
26. Memon, A. M., Rahman, A., & Sajid, S. (2018). Autism Spectrum Disorder (ASD) and attitudes of parents towards ASD in Pakistan. Journal of Autism and Developmental Disorders, 48(5), 1627-1637.
27. Miranda, A., Mira, A., Berenguer, C., Rosello, B., & Baixauli, I. (2019). Parenting stress in mothers of children with autism without intellectual disability. Mediation of behavioral prob- lems and coping strategies. Frontiers in Psychology, 10, Article 464.
28. National Council for Family. (2018). Jordanian Family Report. Amman.
29. Nowell, L. S., Norris, J. M., White, D. E., & Moules, N. J. (2017). Thematic analysis: Striving to meet the trustworthiness crite- ria. International Journal of Qualitative Methods, 16(1), 1-13. https://doi.org/10.1177/1609406917733847
30. Ou, J.-J., Shi, L.-J., Xun, G.-L., Chen, C., Wu, R.-R., Luo, X.-R., Zhang, F.-Y., & Zhao, J.-P. (2015). Employment and finan- cial burden of families with preschool children diagnosed with autism spectrum disorders in urban China: Results from a descriptive study. BMC Psychiatry, 15(1), Article 3. https:// doi.org/10.1186/s12888-015-0382-4
31. Rasheed, M. A., & Ahmed, S. (2019). Autism spectrum disorder in Pakistan: A systematic review of current prevalence and data. Journal of Pediatric Neurology, 17(2), 46-50.
32. Saini, M., Stoddart, K. P., Gibson, M., Morris, R., Barrett, D., Muskat, B., Nicholas, D., Rampton, G., & Zwaigenbaum, L. (2015). Couple relationships among parents of children and adolescents with autism spectrum disorder: Findings from a scoping review of the literature. Research in Autism Spectrum Disorders, 17, 142-157. https://doi.org/10.1016/j.rasd.2015.06.014
33. Shire, S. Y., Baker Worthman, L., Shih, W., & Kasari, C. (2020). Comparison of face-to-face and remote support for interventionists learning to deliver JASPER intervention with children who have autism. Journal of Behavioral Education, 29, 317-338.
34. Van Manen, M. (2023). Phenomenology of practice: Meaning-giving methods in phenomenological research and writing. Taylor & Francis.
35. Weiss, J. A., MacMullin, J. A., & Lunsky, Y. (2015). Empowerment and parent gain as mediators and moderators of distress in mothers of children with autism spectrum disorders. Journal of Child and Family Studies, 24(7), 2038-2045. https://doi.org /10.1007/s10826-014-0004-7
36. World Health Organization. (2019). Autism spectrum disorders. https://www.who.int/news-room/fact-sheets/detail/autism- spectrum-disorders
37. Zablotsky, B., Kalb, L. G., Freedman, B., Vasa, R., & Stuart, E. A. (2014). Health care experiences and perceived financial impact among families of children with an autism spectrum disorder. Psychiatric Services, 65(3), 395-398. https://doi.org/10.1176/ appi.ps.201200552
38. Zaidman-Zait, A., Mirenda, P., Duku, E., Vaillancourt, T., Smith, I. M., Szatmari, P., Bryson, S., Fombonne, E., Volden, J., Waddell, C., Zwaigenbaum, L., Georgioades, S., Bennett, T., Elsabaggh, M., & Thompson, A. (2017). Impact of personal and social resources on parenting stress in mothers of children with autism spectrum disorder. Autism, 21(2), 155-166. https:// doi.org/10.1177/1362361316633033