Systematic Review of Parents with Autism Spectrum Disorder (ASD) Children in Southeast Asia: Work-related Factors
Abstract
Considering the rising cases of ASD among children, this paper aims to investigate the extent to which work-related factors have been examined in studies conducted on parents of children with ASD within the Southeast Asia (SEA) region. Using the PRISMA framework, a search was conducted on three databases (Scopus, PubMed, Web of Science), yielding 38 studies that met the following inclusion criteria: (1) focusing on parents of ASD children, (2) conducted in the SEA region, and (3) articles, excluding systematic and meta-analyses. Of the 38 studies, 24 were from Malaysia, 9 from Singapore, 3 from the Philippines, 1 from Indonesia, and 1 from Vietnam. No articles were found for Brunei, Burma, Myanmar, Cambodia, Timor-Leste, Laos and Thailand. The focus, across the 38 studies, was primarily on the effects of the ASD child's therapies and interventions on parents, followed by parenting stress and quality of life (QOL). Employment-related factors were seen in sub-themes of five studies from Malaysia and Singapore. The review showed a limited focus on employment-related concerns amongst working parents with ASD children within the SEA region. The study's limitations include the lack of studies from other SEA countries such as Brunei, Burma, Myanmar, Cambodia, Timor-Leste, Laos, and Thailand. It is suggested that future research should focus on work-related factors for this underrepresented population while considering the roles of individual, gender, cultural, and religious factors.
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Abd Latif, M. H., Wan Ismail, W. S., Abdul Manaf, M. R., & Abdul Taib, N. I. (2023). Factors influencing despair, self-blame, and acceptance among parents of children with autism spectrum disorder (ASD): A Malaysian perspective. Journal of Autism and Developmental Disorders, 1–8. https://doi.org/10.1007/s10803-023-06155-8
Abdul Manan, A. I., Amit, N., Said, Z., & Ahmad, M. (2018). The influences of parenting stress, children behavioral problems and children quality of life on depression symptoms among parents of children with autism: Preliminary findings. Jurnal Sains Kesihatan Malaysia, 16(si), 137–143. https://doi.org/10.17576/jskm-2018-19
Abdullah, H., Asraf, R. M., Ali, M. A. M., Wahab, N. A., & Baharudin, D. F. (2022). The challenges in raising autistic children: The voices of mothers. International Journal of Evaluation and Research in Education, 11(1), 78–87. https://doi.org/10.11591/ijere.v11i1.21837
Adib, N. A. N., Ibrahim, M. I., Rahman, A. A., Bakar, R. S., Yahaya, N. A., Hussin, S., & Arifin, W. N. (2018). Translation and validation of the malay version of the parents' satisfaction scale (Pss-m) for assessment of caregivers' satisfaction with health care services for children with autism spectrum disorder. International Journal of Environmental Research and Public Health, 15(11), 1–14. https://doi.org/10.3390/ijerph15112455
Adib, N. A. N., Ibrahim, M. I., Rahman, A. A., Bakar, R. S., Yahaya, N. A., Hussin, S., & Wan Mansor, W. N. A. (2019). Predictors of caregivers' satisfaction with the management of children with autism spectrum disorder: A study at multiple levels of health care. International Journal of Environmental Research and Public Health, 16(10), 1–18. https://doi.org/10.3390/ijerph16101684
Amini, F., Yee, K. W., Soh, S. C., Alhadeethi, A., Amini, R., & Ng, E. S. C. (2022). Awareness and perception of medical genetic services among Malaysian parents of autism spectrum disorders children: The lessons to be learned. Advances in Autism, 8(1), 27–38. https://doi.org/10.1108/AIA-08-2020-0047
Ang, K. Q. P., & Loh, P. R. (2019). Mental health and coping in parents of children with autism spectrum disorder (ASD) in Singapore: An examination of gender role in caring. Journal of Autism and Developmental Disorders, 49(5), 2129–2145. https://doi.org/10.1007/s10803-019-03900-w
Anuar, M. A., Zakaria, R., Abidin, M. A. Z., & Misaridin, N. F. I. (2022). Parental stress and coping attitudes in autism spectrum disorder children: A survey during Movement Control Order period amid COVID-19 pandemic. Malaysian Journal of Medicine and Health Sciences, 18(1), 129–136.
Autism Speaks Inc. (2022). Autism statistics and facts. Autism Speaks Inc. https://www.autismspeaks.org/autism-statistics-asd#:~:text=Autism%20Prevalence,)%2C%20according%20to%202018%20data.&text=Boys%20are%20four%20times%20more,diagnosed%20with%20autism%20than%20girls.
Bakar, R. A., & Bakar, J. A. (2019). WhatsApp as a source of support for parents of autistic children. International Journal of Recent Technology and Engineering, 8(2 Special Issue 9), 202–206. https://doi.org/10.35940/ijrte.B1046.0982S919
Basri, N., & Hashim, N. (2020). Stress in parents of children with autism: A Malaysian experience. Intellectual Discourse: Special Issue, 27(SI#2), 923-943. http://journals.iium.edu.my/intdiscourse/index.php/islam
Bernard-Opitz, V., & Kok, A. (1992). Training parents of autistic children in Singapore. International Journal of Rehabilitation Research, 15(1), 82-84.
Bishop-Fitzpatrick, L., Dababnah, S., Baker-Ericzén, M. J., Smith, M. J., & Magaña, S. M. (2019). Autism spectrum disorder and the science of social work: A grand challenge for social work research. Social Work in Mental Health, 17(1), 73–92. https://doi.org/10.1080/15332985.2018.1509411
Brown, T. J., & Clark, C. (2017). Employed parents of children with disabilities and work family life balance: A literature review. Child and Youth Care Forum, 46(6), 857–876. https://doi.org/10.1007/s10566-017-9407-0
Callander, E. J., & Lindsay, D. B. (2018). The impact of childhood autism spectrum disorder on parent's labour force participation: Can parents be expected to be able to re-join the labour force? Autism, 22(5), 542–548. https://doi.org/10.1177/1362361316688331
Center for Disease Control and Prevention (2022, March 2). Data & statistics on autism spectrum disorder. CDC. https://www.cdc.gov/ncbddd/autism/data.html
Chad-Friedman, E., Kuhlthau, K. A., Millstein, R. A., Perez, G. K., Luberto, C. M., Traeger, L., Proszynski, J., & Park, E. (2022). Characteristics and experiences of parents of children with learning and attention disabilities and autism spectrum disorder: A mixed methods study. Family Journal, 30(3), 427–436. https://doi.org/10.1177/10664807211052304
Chan, K. K. S., Lam, C. B., Law, N. C. W., & Cheung, R. Y. M. (2018). From child autistic symptoms to parental affective symptoms: A family process model. Research in Developmental Disabilities, 75(February), 22–31. https://doi.org/10.1016/j.ridd.2018.02.005
Cheuk, S., & Lashewicz, B. (2016). How are they doing? Listening as fathers of children with autism spectrum disorder compare themselves to fathers of children who are typically developing. Autism, 20(3), 343–352. https://doi.org/10.1177/1362361315584464
Costa, A. P., Steffgen, G., & Ferring, D. (2017). Contributors to well-being and stress in parents of children with autism spectrum disorder. Research in Autism Spectrum Disorders, 37, 61–72. https://doi.org/10.1016/j.rasd.2017.01.007
Crettenden, A., Wright, A., & Skinner, N. (2014). Mothers caring for children and young people with developmental disabilities: Intent to work, patterns of participation in paid employment and the experience of workplace flexibility. Community, Work and Family, 17(3), 244–267. https://doi.org/10.1080/13668803.2014.923816
Daulay, N. (2021). Home education for children with autism spectrum disorder during the COVID-19 pandemic: Indonesian mothers experience. Research in Developmental Disabilities, 114(April), 103954. https://doi.org/10.1016/j.ridd.2021.103954
Davy, G., Unwin, K. L., Barbaro, J., & Dissanayake, C. (2022). Leisure, employment, community participation and quality of life in caregivers of autistic children: A scoping review. Autism, 26(8), 1916–1930. https://doi.org/10.1177/13623613221105836
Di Renzo, M., Guerriero, V., Petrillo, M., & di Castelbianco, F.B. (2022). What is parental stress connected to in families of children with autism spectrum disorder? Implications for parents' interventions. Journal of Family Issues, 43(9), 2456–2479. https://doi.org/10.1177/0192513X211030735
Ejiri, K., & Matsuzawa, A. (2019). Factors associated with employment of mothers caring for children with intellectual disabilities. International Journal of Developmental Disabilities, 65(4), 239–247. https://doi.org/10.1080/20473869.2017.1407862
Eow, S. Y., Gan, W. Y., Lim, P. Y., Awang, H., & Mohd Shariff, Z. (2020). Factors associated with autism severity among Malaysian children with autism spectrum disorder. Research in Developmental Disabilities, 100(January), 1–11. https://doi.org/10.1016/j.ridd.2020.103632
Fazree, S. D. M., Aun, N. S. M., Zakaria, S. M., Badayai, A. R. A., Daud, T. I. M., & Idris, I. B. (2023). Challenges in nurturing HFASD teens: Emotional crises and expectations of mothers in Malaysia. Psikohumaniora, 8(2), 211–226. https://doi.org/10.21580/pjpp.v8i2.17078
Foo, M., Yap, P. M. E. H., & Sung, M. (2015). The experience of Singaporean caregivers with a child diagnosed with autism spectrum disorder and challenging behaviours. Qualitative Social Work, 14(5), 634–650. https://doi.org/10.1177/1473325014558662
Frantz, R., Hansen, S. G., & Machalicek, W. (2018). Interventions to promote well-being in parents of children with autism: A systematic review. Review Journal of Autism and Developmental Disorders, 5(1), 58–77. https://doi.org/10.1007/s40489-017-0123-3
Goh, J. X., Aishworiya, R., Ho, R. C. M., Wang, W., & He, H. G. (2021). A qualitative study exploring experiences and support needs of parents of children with autism spectrum disorder in Singapore. Journal of Clinical Nursing, 30(21–22), 3268–3280. https://doi.org/10.1111/jocn.15836
Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43(3), 629–642. https://doi.org/10.1007/s10803-012-1604-y
Ibrahim, N. H. M., Rahman, P. A., & Dahlan, A. (2021). Parent's experience on employment issues faced by young adult with autism spectrum disorder (ASD). Malaysian Journal of Medicine and Health Sciences, 17, 75–83.
Ilias, K., Cornish, K., Kummar, A. S., Park, M. S. A., & Golden, K. J. (2018). Parenting stress and resilience in parents of children with autism spectrum disorder (ASD) in Southeast Asia: A systematic review. Frontiers in Psychology, 9(APR). https://doi.org/10.3389/fpsyg.2018.00280
Jardenil, S. T. P., & Madrigal, D. V. (2022). Paternal resilience in time of pandemic: A phenomenological inquiry on the experiences of fathers of children with autism. Recoletos Multidisciplinary Research Journal, 10(1), 25–38. https://doi.org/10.32871/rmrj2210.01.02
Jyoti, K., & Prashant, S. (2017). Challenges and coping among parents having children with autism spectrum disorder. Journal of Psychosocial Research, 12(2), 363–371. https://search.proquest.com/docview/2015378870/abstract/F622D2665D824574PQ/1?accountid=15133
Kamaludin, N. N., Muhamad, R., Yudin, Z. M., & Zakaria, R. (2022). "Providing sex education is challenging": Malay mothers' experience in implementing sex education to their children with intellectual disabilities. International Journal of Environmental Research and Public Health, 19(12). https://doi.org/10.3390/ijerph19127249
Laili, N. B., Abdullah, W. A. W., Toran, H., Amin, A. S., & Alias, R. (2021). Challenges and support for parents of children with autism spectrum disorder at work. International Journal of Academic Research in Business and Social Sciences, 11(12). https://doi.org/10.6007/ijarbss/v11-i12/11804
Larson, J. (2022). Workplace experiences of parents of children with ASD. In A.E. Hurley-Hanson & C.M. Giannantonio (Eds.), Generation A (Emerald Studies in Workplace Neurodiversity) (pp. 23-44). Emerald Publishing Limited. https://doi.org/10.1108/978-1-80262-263-820220002
Liao, X., & Li, Y. (2019). Economic burdens on parents of children with autism: A literature review. CNS Spectrums, 1–7. https://doi.org/10.1017/S1092852919001512
Magiati, I., Chan, J. Y., Tan, W. L. J., & Poon, K. K. (2014). Do non-referred young people with Autism Spectrum Disorders and their caregivers agree when reporting anxiety symptoms? A preliminary investigation using the Spence Children’s Anxiety Scale. Research in Autism Spectrum Disorders, 8(5), 546–558. https://doi.org/10.1016/j.rasd.2014.01.015
Mai, T. L. A., & Chaimongkol, N. (2022). Testing the feasibility of a nursing intervention focusing on family management for caregivers of children with autism. Journal of Health Science and Medical Research, 40(3), 239–250. https://doi.org/10.31584/jhsmr.2021830
Makino, A., Hartman, L., King, G., Wong, P. Y., & Penner, M. (2021). Parent experiences of autism spectrum disorder diagnosis: A scoping review. Review Journal of Autism and Developmental Disorders, 8(3), 267–284. https://doi.org/10.1007/s40489-021-00237-y
Masuri, M. G., Wan Shafie, W. N., Dahlan, A., Sultan Ibrahim, S. A., Tanapalan, C. K., Che Daud, A. Z., Mohd Poot, E. F., Azman, N. A., Nurhidayah, N., & Md Isa, K. A. (2023). Emotional states and quality of life among parents of children with autism spectrum disorder (ASD) during COVID-19 in Malaysia. Journal of Health and Translational Medicine, 26(Special Issue 2), 120–132. https://doi.org/10.22452/jummec.sp2023no2.14
McCall, B. P., & Starr, E. M. (2018). Effects of autism spectrum disorder on parental employment in the United States: evidence from the National Health Interview Survey. Community, Work and Family, 21(4), 367–392. https://doi.org/10.1080/13668803.2016.1241217
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 problems and coping strategies. Frontiers in Psychology, 10(MAR), 1–12. https://doi.org/10.3389/fpsyg.2019.00464
Moh, T. A., & Magiati, I. (2012). Factors associated with parental stress and satisfaction during the process of diagnosis of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 6(1), 293–303. https://doi.org/10.1016/j.rasd.2011.05.011
Mohamad Aun, N. S., Zakaria, S. M., Ahmad Badayai, A. R., Idris, I. B., Mohd Daud, T. I., & Mohd Fazree, S. D. (2022). Quality of life among mothers of high functioning autism spectrum disorder (HFASD) adolescents. International Journal of Environmental Research and Public Health, 19(11). https://doi.org/10.3390/ijerph19116663
Mohd Roffeei, S. H., Abdullah, N., & Basar, S. K. R. (2015). Seeking social support on Facebook for children with autism spectrum disorders (ASDs). International Journal of Medical Informatics, 84(5), 375–385. https://doi.org/10.1016/j.ijmedinf.2015.01.015
Mutia, F., & Atmi, R. T. (2018). Information sharing behavior among parents of children with autism spectrum disorder (ASD). Library Philosophy and Practice, 2018, 1–9.
Ong, J. J. (2019). Parental satisfaction and perception of Progress in influencing the Practice of complementary health approaches in children with autism: A cross sectional survey from Negeri Sembilan, Malaysia. BMC Complementary and Alternative Medicine, 19(1), 1–9. https://doi.org/10.1186/s12906-019-2672-8
Ooi, Y. P., Lam, C. M., Sung, M., Tan, W. T. S., Goh, T. J., Fung, D. S. S., Pathy, P., Ang, R. P., & Chua, A. (2008). Effects of cognitive-behavioural therapy on anxiety for children with high-functioning autistic spectrum disorders. Singapore Medical Journal, 49(3), 215–220.
Ouyang, L., Grosse, S. D., Riley, C., Bolen, J., Bishop, E., Disabilities, D., States, U., & States, U. (2015). HHS Public Access. 35(7), 1518–1527. https://doi.org/10.1016/j.ridd.2014.04.009.A
Ozdemir, N. K., & Koç, M. (2022). Career adaptability of parents of children with autism spectrum disorder. Current Psychology, 2008. https://doi.org/10.1007/s12144-021-02649-9
Padden, C., & James, J. E. (2017). Stress among parents of children with and without autism spectrum disorder: A comparison involving physiological indicators and parent self-reports. Journal of Developmental and Physical Disabilities, 29(4), 567–586. https://doi.org/10.1007/s10882-017-9547-z
Paula, C. S., Cukier, S., Cunha, G. R., Irarrázaval, M., Montiel-Nava, C., Garcia, R., Rosoli, A., Valdez, D., Bordini, D., Shih, A., Garrido, G., & Rattazzi, A. (2020). Challenges, priorities, barriers to care, and stigma in families of people with autism: Similarities and differences among six Latin American countries. Autism, 24(8), 2228–2242. https://doi.org/10.1177/1362361320940073
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 & Epidemiology in Mental Health, 14(1), 143–176. https://doi.org/10.2174/1745017901814010143
Poon, K. K. (2013). Parental expectations regarding postschool social attainments of adolescents with autism spectrum disorders in Singapore. American Journal on Intellectual and Developmental Disabilities, 118(2), 95–107. https://doi.org/10.1352/1944-7558-118.2.95
Quilendrino, M. I. O., Castor, M. A. R., Mendoza, N. R. N. P., Vea, J. R., & Castillo-Carandang, N. T. (2022). The direct cost of autism and its economic impact on the Filipino family. Acta Medica Philippina, 56(9), 24–30. https://doi.org/10.47895/amp.v56i9.5005
Sadziak, A., Wilinski, W., & Wieczorek, M. (2019). Parental burnout as a health determinant in mothers raising disabled children. Baltic Journal of Health and Physical Activity, 11(3), 77–89. https://doi.org/10.29359/bjhpa.11.3.08
Salleh, N. S., Tang, L. Y., Jayanath, S., & Abdullah, K. L. (2022). An explorative study of affiliate stigma, resilience, and quality of life among parents of children with autism spectrum disorder (ASD). Journal of Multidisciplinary Healthcare, 15(August), 2053–2066. https://doi.org/10.2147/JMDH.S376869
Salman, F. S., Ilias, K., Hashim, N. M., Azri, M. A., Jamil, N., & Daud, A. Z. C. (2022). Parents' experiences in using telehealth to carry out parent-mediated intervention program for children with autism spectrum disorder (ASD) during the pandemic COVID-19. Malaysian Journal of Medicine and Health Sciences, 18(8), 237–246. https://doi.org/10.47836/mjmhs18.8.31
Schnabel, A., Youssef, G. J., Hallford, D. J., Hartley, E. J., McGillivray, J. A., Stewart, M., Forbes, D., & Austin, D. W. (2020). Psychopathology in parents of children with autism spectrum disorder: A systematic review and meta-analysis of prevalence. Autism, 24(1), 26–40. https://doi.org/10.1177/1362361319844636
Shafeeq, S. (2023). More help for those on autism spectrum after age 18. The Straits Times. https://www.straitstimes.com/singapore/more-help-for-those-on-autism-spectrum-after-age-18
Shorey, S., Ng, E. D., Haugan, G., & Law, E. (2020). The parenting experiences and needs of Asian primary caregivers of children with autism: A meta-synthesis. Autism, 24(3), 591–604. https://doi.org/10.1177/1362361319886513
Siah, P. C., & Tan, S. H. (2015). Sense of coherence and WHOQoL among parents of children with ASD in Malaysia. International Journal on Disability and Human Development, 14(1), 59–66. https://doi.org/10.1515/ijdhd-2013-0039
Siah, P. C., & Tan, S. H. (2016). Relationships between sense of coherence, coping strategies and quality of life of parents of children with autism in Malaysia: A case study among chinese parents. Disability, CBR and Inclusive Development, 27(1), 78–91. https://doi.org/10.5463/DCID.v27i1.485
Sitimin, S. A., Fikry, A., Ismail, Z., & Hussein, N. (2017). Work-family conflict among working parents of children with autism in Malaysia. Procedia Computer Science, 105(December 2016), 345–352. https://doi.org/10.1016/j.procs.2017.01.232
Stewart, L. M., Rosenzweig, J. M., Malsch Tamarkin, A. M., Brennan, E. M., & Lukefahr, J. (2022). Expanding workplace inclusion of employees who are parents of children with disabilities through diversity training. Healthcare (Switzerland), 10(12), 1–17. https://doi.org/10.3390/healthcare10122361
Tenerife, J. J. L., Peteros, E. D. L., Bunghanoy, J. L., Pinili, L. C., de Vera, J. V., & Fulgencio, M. D. (2023). Impact of parental involvement on the communication skills of children with autism. International Journal of Evaluation and Research in Education, 12(2), 659–666. https://doi.org/10.11591/ijere.v12i2.24641
Teo, J. X., & Lau, B. T. (2018). Parental perceptions, attitudes and involvement interventions for autism spectrum disorders in Sarawak, Malaysia. Disability, CBR and Inclusive Development, 1(1), 26–46. https://doi.org/10.5463/DCID.v29i1.664
Thomas, J. (2019, March 5). What is Southeast Asia doing about autism?. The Asean Post. https://theaseanpost.com/article/what-southeast-asia-doing-about-autism
Torregoza, H. (2023, April 5). Alarmed over rising cases, senators push for bill creating government funded Center for Autism. Manilla Bulletin. https://mb.com.ph/2023/04/05/alarmed-over-rising-cases-senators-push-for-bill-creating-gov-t-funded-center-for-autism
Vui, L. T., Minh, D. D., Quynh, N. T., Giang, N. T. H., Mai, V. T. T., Ha, B. T. T., & Van Minh, H. (2022). Early screening and diagnosis of autism spectrum disorders in Vietnam: A population-based cross-sectional survey. Journal of Public Health Research, 11(2). https://doi.org/10.4081/jphr.2021.2460
World Health Organization (2022). Autism. WHO. https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders
World Health Organization Regional Office for South-East Asia (2017). WHO South-East Asia Regional strategy on autism spectrum disorders. WHO. https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders
Xue, J., Ooh, J., & Magiati, I. (2014). Family functioning in Asian families raising children with autism spectrum disorders: The role of capabilities and positive meanings. Journal of Intellectual Disability Research, 58(5), 406–420. https://doi.org/10.1111/jir.12034
Yaacob, W. N. W., Yaacob, L. H., Muhamad, R., & Zulkifli, M. M. (2021). Behind the scenes of parents nurturing a child with autism: A qualitative study in Malaysia. International Journal of Environmental Research and Public Health, 18(16). https://doi.org/10.3390/ijerph18168532
Yaacob, W. N. W., Yaacob, L. H., Zulkifli, M. M., & Muhamad, R. (2022). A journey towards resilience: Coping strategies adopted by parents with children having autism spectrum disorder in northeast Malaysia. International Journal of Environmental Research and Public Health, 19 (4). https://doi.org/10.3390/ijerph19042458
Yee, C. H., Daud, M. N., & Abdullah, W. A. W. (2020). Mother! I'm autistic. Am I a burden to you? International Journal of Academic Research in Business and Social Sciences, 10(11), 426–440. https://doi.org/10.6007/ijarbss/v10-i11/8103
Zhou, W., Liu, D., Xiong, X., Xu, H., & Manchia, M. (2019). Emotional problems in mothers of autistic children and their correlation with socioeconomic status and the children's core symptoms. Medicine (United States), 98(32). https://doi.org/10.1097/MD.0000000000016794
