Assessing Parents' Understanding of Autism Spectrum Disorder (ASD) in Malaysia: A Cross-Sectional Study
Abstract
The current understanding of autism among parents of children with Autism Spectrum Disorder (ASD) in Malaysia reflects a multifaceted perspective marked by various challenges including confusion, financial constraints, limited resources, and a shortage of trained special needs teachers and affordable centers. This study aims to assess the level of autism knowledge among parents of individuals with ASD in Malaysia. A cross-sectional study involving 471 parents was conducted in the Klang Valley between May 2022 and June 2023, utilizing an online survey tool. The study found that most parents exhibited limited understanding in crucial areas related to autism such as its causes, diagnosis, and treatment options. Moreover, there was a significant relationship between the level of education and knowledge of ASD. The findings underscore the importance of comprehensive parental training to provide enduring support for children with ASD. This highlights the necessity for ongoing efforts to enhance parental knowledge and support systems for individuals with autism in Malaysia.
Keywords: Autism; chi-square test; knowledge; Malaysia; parents
References
American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders. American Psychiatric Association. https://doi.org/10.1176/appi.books.9780890425596
Andoy Galvan, J. A., Ramalingam, P. N., Patil, S. S., Shobri, M. A. S., Chinna, K., Sahrir, M. S. & Chidambaram, K. (2020). Mode of delivery, order of birth, parental age gap and autism spectrum disorder among Malaysian children: A case-control study. Heliyon, 6(10), e05068. https://doi.org/10.1016/j.heliyon.2020.e05068
Anwar, M. S., Tahir, M., Nusrat, K. & Khan, M. R. (2018). Knowledge, Awareness, and Perceptions Regarding Autism Among Parents in Karachi, Pakistan. Cureus. https://doi.org/10.7759/cureus.3299
Benallie, K. J., McClain, M. B., Harris, B. & Schwartz, S. E. (2020). Validation of the ASKSG with a Parent Sample in the United States. Journal of Autism and Developmental Disorders, 50(12), 4557–4565. https://doi.org/10.1007/s10803-020-04480-w
Chu, S. Y., Park, H., Lee, J., Shaharuddin, K. K. binti & Gan, C. H. (2020). Self‐stigma and its associations with stress and quality of life among Malaysian parents of children with autism. Child: Care, Health and Development, 46(4), 485–494. https://doi.org/10.1111/cch.12771
Colizzi, M., Lasalvia, A. & Ruggeri, M. (2020). Prevention and early intervention in youth mental health: is it time for a multidisciplinary and trans-diagnostic model for care? International Journal of Mental Health Systems, 14(1), 23. https://doi.org/10.1186/s13033-020-00356-9
Deb, S., Retzer, A., Roy, M., Acharya, R., Limbu, B. & Roy, A. (2020). The effectiveness of parent training for children with autism spectrum disorder: a systematic review and meta-analyses. BMC Psychiatry, 20(1), 583. https://doi.org/10.1186/s12888-020-02973-7
Effatpanah, M., Shariatpanahi, G., Sharifi, A., Ramaghi, R. & Tavakolizadeh, R. (2019). A Preliminary Survey of Autism Knowledge and Attitude among Health Care Workers and Pediatricians in Tehran, Iran. Iranian Journal of Child Neurology, 13(2), 29–35.
HUI, M. L., LAY, W. L., CHE AHMAD, A., GHAZALI, E. E., PHAIK, K. T. & SIEN, A. S. L. (2021). A Survey of Lay Knowledge of Autism Spectrum Disorder in Malaysia. Jurnal Sains Kesihatan Malaysia, 19(01), 49–57. https://doi.org/10.17576/jskm-2021-1901-06
Hyman, S. L., Levy, S. E., Myers, S. M., Kuo, D. Z., Apkon, S., Davidson, L. F., Ellerbeck, K. A., Foster, J. E. A., Noritz, G. H., Leppert, M. O., Saunders, B. S., Stille, C., Yin, L., Weitzman, C. C., Childers, D. O., Levine, J. M., Peralta-Carcelen, A. M., Poon, J. K., Smith, P. J., … Bridgemohan, C. (2020). Identification, Evaluation, and Management of Children With Autism Spectrum Disorder. Pediatrics, 145(1). https://doi.org/10.1542/peds.2019-3447
Ilias, K., Cornish, K., Park, M. S.-A., Toran, H. & Golden, K. J. (2019). Risk and Resilience Among Mothers and Fathers of Primary School Age Children With ASD in Malaysia: A Qualitative Constructive Grounded Theory Approach. Frontiers in Psychology, 9. https://doi.org/10.3389/fpsyg.2018.02275
Ilias, K., Liaw, J. H. J., Cornish, K., Park, M. S.-A. & Golden, K. J. (2017). Wellbeing of mothers of children with “A-U-T-I-S-M” in Malaysia: An interpretative phenomenological analysis study. Journal of Intellectual & Developmental Disability, 42(1), 74–89. https://doi.org/10.3109/13668250.2016.1196657
Indera Luthfi, N. I., Alias, I. A. & Mohamad, M. (2023). Religious coping of Malaysian Muslims with high Sensory-Processing Sensitivity in facing the loss of loved one(s). Simulacra, 6(1), 109–123. https://doi.org/10.21107/sml.v6i1.19864
Investigators, A. and D. D. M. N. S. Y. 2008 P. (2012). Prevalence of Autism Spectrum Disorders — Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2008. Morbidity and Mortality Weekly Report: Surveillance Summaries, 61(3), 1–19. http://www.jstor.org/stable/24806043
Kaman, N., Ishak, A. & Muhammad, J. (2023). Knowledge, attitudes, and associated factors of caregivers towards children with autism spectrum disorder in East Coast Peninsular Malaysia. PeerJ, 11, e14919. https://doi.org/10.7717/peerj.14919
Kamaralzaman, S., Toran, H., Mohamed, S. & Abdullah, N. B. (2018). The Economic Burden of Families with Autism Spectrum Disorders (ASD) Children in Malaysia. Journal of ICSAR, 2(1), 71–77. https://doi.org/10.17977/um005v2i12018p071
Lavelle, T. A., Weinstein, M. C., Newhouse, J. P., Munir, K., Kuhlthau, K. A. & Prosser, L. A. (2014). Economic Burden of Childhood Autism Spectrum Disorders. Pediatrics, 133(3), e520–e529. https://doi.org/10.1542/peds.2013-0763
Low, H. M. & Zailan, F. (2018). Medical students’ perceptions, awareness, societal attitudes and knowledge of autism spectrum disorder: an exploratory study in Malaysia. International Journal of Developmental Disabilities, 64(2), 86–95. https://doi.org/10.1080/20473869.2016.1264663
Luleci, N. E., Hidiroglu, S., Karavus, M., Karavus, A., Sanver, F. F., Ozgur, F., Celik, M. & Celik, S. C. (2016). The pharmacists’ awareness, knowledge and attitude about childhood autism in Istanbul. International Journal of Clinical Pharmacy, 38(6), 1477–1482. https://doi.org/10.1007/s11096-016-0394-2
McClain, M. B., Harris, B., Schwartz, S. E., Benallie, K. J., Golson, M. E. & Benney, C. M. (2019). Brief Report: Development and Validation of the Autism Spectrum Knowledge Scale General Population Version: Preliminary Analyses. Journal of Autism and Developmental Disorders, 49(7), 3007–3015. https://doi.org/10.1007/s10803-019-04019-8
Nazir, F., Jano, Z., Ramdzan Ali, A. A. E. & Toha, A. J. (2024). Colour Reading Speech Kit (Tubana Kit) as a Therapy Tool for Students with Special Needs at Sekolah Menengah Kebangsaan Seremban 2, Seremban, Negeri Sembilan. e-Bangi Journal of Social Science and Humanities, 21(2). https://doi.org/10.17576/ebangi.2024.2102.16
Oono, I. P., Honey, E. J. & McConachie, H. (2013). Parent-mediated early intervention for young children with autism spectrum disorders (ASD). Cochrane Database of Systematic Reviews. https://doi.org/10.1002/14651858.CD009774.pub2
Pickard, K. E. & Ingersoll, B. R. (2016). Quality versus quantity: The role of socioeconomic status on parent-reported service knowledge, service use, unmet service needs, and barriers to service use. Autism, 20(1), 106–115. https://doi.org/10.1177/1362361315569745
Razman, M. O. I. & Mohd Hoesni, S. (2023). Socioeconomic factors and its role in emotion regulation in children from a socio-ecological perspective: A sytematic literature review. e-Bangi Journal of Social Science and Humanities, 20(4). https://doi.org/10.17576/ebangi.2023.2004.21
Sathyabama, R. (2019). Clinical characteristics and demographic profile of children with Autism Spectrum Disorder (ASD) at child development clinic (CDC), Penang Hospital, Malaysia. The Medical Journal of Malaysia, 74(5), 372–376.
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
Tahir, Z., Mohd Yusoff, J. Z., Thambapillay, S. & Abdul Rahman, A. S. (2023). Konsep Kesamarataan dan Hak-hak Orang Kurang Upaya di Bawah Akta Orang Kurang Upaya 2008. Kanun Jurnal Undang-Undang Malaysia, 35(2), 217–238. https://doi.org/10.37052/kanun.35(2)no2
White, R. C. & Remington, A. (2019). Object personification in autism: This paper will be very sad if you don’t read it. Autism, 23(4), 1042–1045. https://doi.org/10.1177/1362361318793408
Zhao, M., Fu, W. & Ai, J. (2021). The Mediating Role of Social Support in the Relationship Between Parenting Stress and Resilience Among Chinese Parents of Children with Disability. Journal of Autism and Developmental Disorders, 51(10), 3412–3422. https://doi.org/10.1007/s10803-020-04806-8
Zwaigenbaum, L., Bauman, M. L., Fein, D., Pierce, K., Buie, T., Davis, P. A., Newschaffer, C., Robins, D. L., Wetherby, A., Choueiri, R., Kasari, C., Stone, W. L., Yirmiya, N., Estes, A., Hansen, R. L., McPartland, J. C., Natowicz, M. R., Carter, A., Granpeesheh, D., … Wagner, S. (2015). Early Screening of Autism Spectrum Disorder: Recommendations for Practice and Research. Pediatrics, 136(Supplement_1), S41–S59. https://doi.org/10.1542/peds.2014-3667D
Full Text:
PDFDOI: http://dx.doi.org/10.17576/ebangi.2024.2103.08
Refbacks
- There are currently no refbacks.
-
_________________________________________________
eISSN 1823-884x
Faculty of Social Sciences & Humanities
Universiti Kebangsaan Malaysia
43600 UKM Bangi, Selangor Darul Ehsan
MALAYSIA
© Copyright UKM Press, Universiti Kebangsaan Malaysia