Preliminary Study on Parental Perspectives Regarding Early Information for Parents Dealing with Autism Spectrum Disorder (ASD) Children
DOI:
https://doi.org/10.37134/jpak.vol13.2.1.2024Keywords:
Autism Spectrum Disorder, ASD, Parenting, Knowledge, Awareness AND InformationAbstract
Acceptance for parents of children with Autism Spectrum Disorder (ASD) is not an easy feat. They grapple with various challenges and pressures concerning their child's behavior as they grow up. As a result, parents begin seeking information about their child's behavior, symptoms, treatment options, therapy, agencies, and various other relevant matters as an initial step in their course of action. The conducted study aims to explore the perspectives of parents regarding the initial information required to navigate the challenges of raising a child with autism spectrum disorder (ASD). A qualitative approach was chosen, utilizing purposive sampling of 24 parents who have children with autism, whether formally diagnosed by experts or currently undergoing treatment or therapy for the confirmation process. The findings from interviews were analyzed thematically and yielded four overarching themes: information channels and content, support services, treatments and therapies, and the trajectory of children with autism. In conclusion, parents of children with Autism Spectrum Disorder (ASD) are in dire need of early-stage information regarding this condition, ensuring that their child is on the appropriate path to meet their specific needs. Given that this study only explores the informational needs of parents, it is recommended that future research endeavors delve into the broader requirements of families with autism, including financial assistance, relevant agencies, training, and workshops to provide comprehensive support to families with children diagnosed with autism.
Downloads
References
Abel, S., Machin, T., & Brownlow, C. (2019). Support, socialise and advocate: An exploration of the stated purposes of Facebook autism groups. Research in Autism Spectrum Disorders, 61, 10–21. https://doi.org/10.1016/j.rasd.2019.01.009.
Adams, S. N. (2022). Feeding and Swallowing Issues in Autism Spectrum Disorders. Neuropsychiatric Disease and Treatment, 18 (October), 2311–2321. https://doi.org/10.2147/NDT.S332523
Aguiar, M. C. M. D., & Pondé, M. P. (2020). Autism: impact of the diagnosis in the parents. Jornal Brasileiro de Psiquiatria, 69, 149-155.
Alibrandi, A., Zirilli, A., Loschiavo, F., Gangemi, M. C., Sindoni, A., Tribulato, G., Lo Giudice, R., & Famà, F. (2023). Food Selectivity in Children with Autism Spectrum Disorder: A Statistical Analysis in Southern Italy. Children, 10(9), 1553. https://doi.org/10.3390/children10091553
American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders (DSM-5), 5th ed.; American Psychiatric Association: Washington, DC, USA, 2013
Anggraini, I. R., Alifatin, A., Aini, N., & Pradita, V. G. (2022). The Effect of Play Therapy Among Children with Autism: A Scoping Review. Jurnal Aisyah: Jurnal Ilmu Kesehatan, 7(1), 287-294.
Ardic, A. (2020). Relationship between Parental Burnout Level and Perceived Social Support Levels of Parents of Children with Autism Spectrum Disorder. International Journal of Educational Methodology, 6(3), 533-543.
Azimah Abdullah. (2017). Kemahiran Kognitif dan Sosial Kanak-Kanak Autisme Dalam Permainan Numerasi. Tesis PhD, USM
Bujang, N. A., Jima’ain, M. T., & Saari, Z. (2020). Penerapan Konsep IKHLAS dalam menyantuni anak istimewa (autisme)(Implementation of IKHLAS Concept in treating special needs). UMRAN-International Journal of Islamic and Civilizational Studies, 6(3-2).
Crane, L., Batty, R., Adeyinka, H., Goddard, L., Henry, L. A., & Hill, E. L. (2018). Autism diagnosis in the United Kingdom: Perspectives of autistic adults, parents and professionals. Journal of autism and developmental disorders, 48, 3761-3772.
Der Loke, J., Zakaria, A. R., & Lau, P. L. (2013). Pendekatan Terapi Lukisan dalam Kalangan Kanak-kanak Autisme. Journal of Special Needs Education, 3, 92-108.
Fahlevy, I. (2022). Tesis Disertasi, Penerimaan Diri pada Ibu yang Memiliki Anak Autisme. UNIVERSITAS MEDAN AREA, INDONESIA
Genovese, A., & Butler, M. G. (2020). Clinical assessment, genetics, and treatment approaches in autism spectrum disorder (ASD). International journal of molecular sciences, 21(13), 4726.
Hyman, S. L., Levy, S. E., Myers, S. M., Kuo, D. Z., Apkon, S., Davidson, L. F., ... & Bridgemohan, C. (2020). Identification, evaluation, and management of children with autism spectrum disorder. Pediatrics, 145(1).
Khairuddin, K. F. (2022). Pendidikan Inklusif Murid Berkeperluan Khas Kategori Autisme di Sekolah Rendah: Perspektif Ibu Bapa. Malaysian Journal of Social Sciences and Humanities (MJSSH), 7(2), e001286-e001286.
Laili, N. binti, 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), 655-669.
Lydia Pook, Y. Y. & Suziyani Mohamed. (2023). Perancangan Masa Depan Kanak-Kanak dengan Kecelaruan Spektrum Autisme (ASD): Perspektif Ibu Bapa. Malaysian Journal of Social Sciences and Humanities (MJSSH), 8(2), e002116.https://doi.org/10.47405/mjssh.v8i2.2116
Manisah Mohd Ali & Nur Farahana Ismail @ Mohd Ismail. (2020). Meneroka Cabaran yang Dihadapi oleh Ibu dalam Menguruskan Anak Berkeperluan Khas : Exploring the Challenges Faced by Mothers in Managing Children with Special Needs. Journal of Quran Sunnah Education & Special Needs, 4(2), 63-75. https://doi.org/10.33102/jqss.vol4no2.86
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, 1-18.
Martins, R., Carvalho, N., Carvalho, R., & Batista, S. (2021). Autism spectrum disorder: impact of diagnosis on children’s parents. Int J Family Community Med, 5(2), 63-6
McCarty, P., & Frye, R. E. (2020, October). Early detection and diagnosis of autism spectrum disorder: why is it so difficult?. In Seminars in Pediatric Neurology (Vol. 35, p. 100831). WB Saunders.
Monteiro, M. A., dos Santos, A. A. A., Gomes, L. M. M., & Rito, R. V. V. F. (2020). Autism spectrum disorder: A systematic review about nutritional interventions. Revista Paulista de Pediatria, 38. https://doi.org/10.1590/1984-0462/2020/38/2018262
Mud, S. C., Sham, F. M., & Ali, M. M. (2021). Kaedah pengawalan tingkah laku bagi anak mengalami Autisme: Controlling methods of tantrum behaviour for children with Autism. al-Irsyad: Journal of Islamic and Contemporary Issues, 6(2), 733-744.
Muhammad Haziq Mohd Sharif & Nurul Akma Jamil (2019), Cabaran ibu bapa bersama kanak-kanak kecelaruan spektrum autisme (ASD): tinjauan literatur. Jurnal Sains Sosial: Malaysian Journal of Social Sciences, 4(1), 33-43.
Paolucci, C., Giorgini, F., Scheda, R., Alessi, F. V., & Diciotti, S. (2023). Early prediction of Autism Spectrum Disorders through interaction analysis in home videos and explainable artificial intelligence. Computers in Human Behavior, 148, 107877.
Pinna, R., De Simone, S., Cicotto, G., & Malik, A. (2020). Beyond organisational support: Exploring the supportive role of co-workers and supervisors in a multi-actor service ecosystem. Journal of Business Research, 121, 524-534.
Prata, J., Lawson, W., & Coelho, R. (2019). Stress factors in parents of children on the autism spectrum: An integrative model approach. International Journal of Clinical Neurosciences and Mental Health, 6(2), 1-9.
Raharjo, D. S., Alfiyanti, D., & Purnomo, S. E. (2014). Pengaruh terapi bermain menggunting terhadap peningkatan motorik halus pada anak autisme usia 11–15 tahun Di Sekolah Luar Biasa Negeri Semarang. Karya Ilmiah.
Rasmussen, P. S., Pedersen, I. K., & Pagsberg, A. K. (2020). Biographical disruption or cohesion?: How parents deal with their child's autism diagnosis. Social Science & Medicine, 244, 112673.
Riyahi, A., Yazdani Ghadikolaee, S., Kolagar, M., Azami Sarukolaii, A., Abdolrazaghi, H., Rafiei, F., & Mohammadbeigi, A. (2017). Comparing the parenting role tasks in parents of children with mental/physical disabilities. International Journal of Pediatrics, 5(6), 5079-5089.
Saha, A., & Agarwal, N. (2016). Modeling social support in autism community on social media. Network Model Analysis Health Inform Bioinforma, 5, 8. https://doi.org/10.1007/s1372 1-016-0115-8.
Shepherd, D., Goedeke, S., Landon, J., & Meads, J. (2020). The types and functions of social supports used by parents caring for a child with autism spectrum disorder. Journal of Autism and Developmental Disorders, 50, 1337-1352.
Shilubane, H., & Mazibuko, N. (2020). Understanding autism spectrum disorder and coping mechanism by parents: An explorative study. International journal of nursing sciences, 7(4), 413-418.
Sirait, J. S., & Desiana, S. M. (2019). Animal-Assisted Therapy sebagai Pengobatan Pasien Autism Spectrum Disorder pada Anak. Jurnal Ilmu Keperawatan Jiwa, 2(3), 169-174.
Sujana, D. S., & Augustine, D. P. (2023). Diagnosis of autism spectrum disorder: A review of three focused interventions. SN Computer Science, 4(2), 139.
Tialani, K. T., Solikhin, N. H., & Susilo, S. (2023). PENGARUH TERAPI ABA PADA ANAK TERDIAGNOSA AUTISM SPECTRUM DISORDER. Jurnal Cakrawala Ilmiah, 2(6), 2325-2334.
Van’t Hof, M., Tisseur, C., van Berckelear-Onnes, I., van Nieuwenhuyzen, A., Daniels, A. M., Deen, M., ... & Ester, W. A. (2021). Age at autism spectrum disorder diagnosis: A systematic review and meta-analysis from 2012 to 2019. Autism, 25(4), 862-873.
Vasilakis, M., Polychronis, K., Panagouli, E., Tzila, E., Papageorgiou, A., Thomaidou, L., Psaltopoulou, T., Tsolia, M., Sergentanis, T. N., & Tsitsika, A. K. (2023). Food Difficulties in Infancy and ASD: A Literature Review. Children, 10(1), 1–12. https://doi.org/10.3390/children10010084
Wibowo, B. S., & Naufal, A. F. (2022). POLA ASUH PADA ANAK AUTISM. Journal of Innovation Research and Knowledge, 2(7), 2729-2732.
Yaacob,W.N.W.;Yaacob, L.H.; Muhamad, R.; Zulkifli, M.M. Behind the Scenes of Parents Nurturing a Child with Autism: A Qualitative Study in Malaysia. Int. J. Environ. Res. Public Health 2021, 18, 8532. https://doi.org/10.3390/ ijerph18168532
Ying, L. P. Y., & Mohamed, S. (2023). Perancangan Masa Depan Kanak-Kanak dengan Kecelaruan Spektrum Autisme (ASD): Perspektif Ibu Bapa. Malaysian Journal of Social Sciences and Humanities (MJSSH), 8(2), e002116-e002116.
Zakaria, S. M., & Tauhaid, N. S. M. (2018). Cabaran Membesarkan Anak-Anak Autisme Daripada Perspektif Ibu (The Challenges Of Nurturing Autistic Children From The Mother’s Perspective). Jurnal Psikologi Malaysia, 32(1).
Laman Sesawang
World Health Organization https://www.who.int/news-room/fact-sheets/detail/autism spectrumdisorders#:~:text=It%20is%20estimated%20that%20worldwide,figures%20that%20are%20substantially%20higher. di layar pada 21 Oktober 2023.
Downloads
Published
How to Cite
Issue
Section
License
Copyright (c) 2024 Iylia Mohamad, Fairuz ‘Ain Harun, Mohamad Albaree Abdul, Norly Jamil, Nur Ain Farhana Kariuddin, Mohd Norhafizi Arof, Nurul Akma Jamil, Intan Farahana Abdul Rani
This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.
