The Meaning of Having an Autistic Child in Malay Family Indonesia
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Abstract
The condition of families with autistic children raises many views and judgments both from family and society. This ethnographic study aimed to describe the meaning of families and communities towards families with autistic children. Data were collected through focus group discussions and in-depth interviews. Key informants come from families who have autistic children and community members recruited by purposive sampling, while the data were analyzed using thematic analysis. This study results generate two categories of perception of the meaning of having autistic children. The first category was made by the families which comprises four themes such as 1) A test from God, 2) Destiny of God, 3) Autistic children different with other children, and 4) Children who need intensive helping. The second category was the perception made by the community members which consists of two themes, such as 1) Test for family, and 2) An autistic child as a holy child. This study further shows that culture is believed to determine how families and the members of the community perceive and interpret the existence of autistic children in the families so that it is very important for health workers to understand the culture that exists in the community.
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How to Cite
Jiu, C., & Rungreangkulkij, S. (2019). The Meaning of Having an Autistic Child in Malay Family Indonesia. Unnes Journal of Public Health, 8(2), 73-80. https://doi.org/10.15294/ujph.v0i0.29527
References
Al-Aoufi, H., Al-Zyoud, N., & Shahmina, N. 2012. Islam and the cultural conceptualization of disability. International Journal of Adolescence and Youth, 17(4): 205–219.
Anh, M.T.L. 2015. Factors related to burden among caregivers of children with autism in Vietnam. Master Thesis. Saen Suk: Faculty of Nursing, Burapha University, Thailand.
Bal, V. H., Kim, S., Cheong, D., & Lord, C. 2016. Daily living skills in individuals with autism spectrum disorder from 2 to 21 years of age. HHS Public Access, 19(7): 774–784.
Braun, V., & Clarke, V. 2006. Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2): 77-101.
Centers for Disease Control and Prevention (CDC). 2016. Community Report on Autism 2016. National Center on Birth Defects and Developmental Disabilities Division of Congenital and Developmental Disorders. United States Department of Health and Human Services. Retrieved from https://www.cdc.gov/ncbddd/autism/documents/community_report_autism.pdf
Donald, K. 2015. Understanding Parent Perceptions of Autism Spectrum Disorder Diagnosis and Intervention Services Through A Culturally Responsive Framework. Master Thesis. Montreal: The Department of Education, Concordia University, Canada.
Dyches, T.T., Wilder, L.K., Sudweeks, R.R., Obiakor, F.E., & Algozzine, B. 2004. Multicultural Issues in Autism. Journal of Autism and Developmental Disorders, 34(2): 211–222.
Ennis-Cole, D., Durodoye, B.A., & Harris, H.L. 2013. The impact of culture on autism diagnosis and treatment: Considerations for counselors and other professionals. The Family Journal, 21(3): 279–287.
Gobrial, E. 2018. The Lived Experiences of Mothers of Children with the Autism Spectrum Disorders in Egypt. Social Sciences, 7(8): 1-11.
Goin-Kochel, R.P., Mire, S.S., & Dempsey, A.G. 2014. Emergence of autism spectrum disorder in children from simplex families: Relations to parental perceptions of etiology. Journal of Autism and Developmental Disorders, 45: 1451–1463.
Gorsky, S.M. 2014. Self-Care Strategies Among Parents With a Child Diagnosed With Autism Spectrum Disorder. Master Thesis. San Bernardino: California State University, United States.
Graetz, J.E. 2010. Autism grows up: Opportunities for adults with autism. Disability & Society, 25(1): 33-47.
Greaves, N., Prince, E., & Evans, D.W. 2006. Repetitive and ritualistic behavior in children with Prader Willi syndrome and children with autism. Journal of Intellectual Disability Research, 50: 92-100.
Hernawan, A., Diningrum, A., Jati, S.N., & Nasip, M. 2018. Risk Factors of Autism Spectrum Disorder (ASD). Unnes Journal of Public Health, 8(2): 104-112.
Hwang, S.K., & Charnley, H. 2010. Making the familiar strange and making the strange familiar: Understanding Korean children’s experiences of living with an autistic sibling. Disability & Society, 25(5): 579–592.
Jasmin, E., Couture, M., McKinley, P., Reid, G., Fombonne, E., & Gisel, E. 2009. Sensori-motor and daily living skills of preschool children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 39(2): 231–241.
Jegatheesan, B., Miller, P.J., & Fowler, S.A. 2010. Autism From a Religious Perspective : A Study of Parental Beliefs in South Asian Muslim Immigrant Families. Hammill Institute on Disabilities, 25(2): 98-109.
Judarwanto. 2015. Jumlah penderita autis di Indonesia. Retrieved from https://klinikautis.com/2015/09/06/jumlah-penderita-autis-di-indonesia. Accessed on April 2018.
Kok, J.K., & Gan, C.C. 2012. Narrative from the Care Givers of Autism Spectrum Disorder Children in Malaysia. International Proceedings of Economics Development and Research, 48: 193-197. DOI: 10.7763/IPEDR.V48. 40.
Mandell, D., & Novak, M. 2005. The role of culture in families’ treatment decisions for children with autism spectrum disorders. Mental Retardation and Developmental Disabilities Research Reviews, 11: 110-115.
Nuner, J.E., & Griffith, A.C.S. 2011. Early Signs of Autism How to Support Families and Navigate Referral Procedures. Dimensions of Early Childhood, 39(1): 12-20.
Pitten, K. 2008. How cultural values influence diagnosis, treatment and the welfare of families with an autistic child. InSight: Rivier Academic Journal, 4(1): 1–5.
Riany, Y.E, Cuskelly, M., & Meredith, P. 2016. Cultural beliefs about autism in Indonesia. International Journal of Disability, Development and Education, 63(6): 623-640.
Samadi S.A., & McConkey, R. 2011. Autism in developing countries: lessons from Iran. Autism Research and Treatment, 145359: 1-11
Scheuermann, B., & Webber, J. 2002. Autism: Teaching does make a difference. Belmont, CA: Wadsworth.
Shaked, M., & Bilu, Y. 2006. Grappling with affliction: Autism in the Jewish Ultra Orthodox community in Israel. Culture, Medicine and Psychiatry, 30: 1–27.
Tait, K.J., & Mundia, L. 2012. The impact of a child with autism on the Bruneian family system. Int. J. Spec. Educ. 27: 199–212.
World Health Organization. 2013. Autism spectrum disorders & other developmental disorders: From raising awareness to building capacity. Geneva, Switzerland: World Health Organization.
Zablotsky, B., Black, L.I., Maenner, M.J., Schieve, L.A., & Blumberg, S.J. 2015. Changes in the 2014 National Health Interview Survey. National Health Statistics Report, Number 87, November 13.
Anh, M.T.L. 2015. Factors related to burden among caregivers of children with autism in Vietnam. Master Thesis. Saen Suk: Faculty of Nursing, Burapha University, Thailand.
Bal, V. H., Kim, S., Cheong, D., & Lord, C. 2016. Daily living skills in individuals with autism spectrum disorder from 2 to 21 years of age. HHS Public Access, 19(7): 774–784.
Braun, V., & Clarke, V. 2006. Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2): 77-101.
Centers for Disease Control and Prevention (CDC). 2016. Community Report on Autism 2016. National Center on Birth Defects and Developmental Disabilities Division of Congenital and Developmental Disorders. United States Department of Health and Human Services. Retrieved from https://www.cdc.gov/ncbddd/autism/documents/community_report_autism.pdf
Donald, K. 2015. Understanding Parent Perceptions of Autism Spectrum Disorder Diagnosis and Intervention Services Through A Culturally Responsive Framework. Master Thesis. Montreal: The Department of Education, Concordia University, Canada.
Dyches, T.T., Wilder, L.K., Sudweeks, R.R., Obiakor, F.E., & Algozzine, B. 2004. Multicultural Issues in Autism. Journal of Autism and Developmental Disorders, 34(2): 211–222.
Ennis-Cole, D., Durodoye, B.A., & Harris, H.L. 2013. The impact of culture on autism diagnosis and treatment: Considerations for counselors and other professionals. The Family Journal, 21(3): 279–287.
Gobrial, E. 2018. The Lived Experiences of Mothers of Children with the Autism Spectrum Disorders in Egypt. Social Sciences, 7(8): 1-11.
Goin-Kochel, R.P., Mire, S.S., & Dempsey, A.G. 2014. Emergence of autism spectrum disorder in children from simplex families: Relations to parental perceptions of etiology. Journal of Autism and Developmental Disorders, 45: 1451–1463.
Gorsky, S.M. 2014. Self-Care Strategies Among Parents With a Child Diagnosed With Autism Spectrum Disorder. Master Thesis. San Bernardino: California State University, United States.
Graetz, J.E. 2010. Autism grows up: Opportunities for adults with autism. Disability & Society, 25(1): 33-47.
Greaves, N., Prince, E., & Evans, D.W. 2006. Repetitive and ritualistic behavior in children with Prader Willi syndrome and children with autism. Journal of Intellectual Disability Research, 50: 92-100.
Hernawan, A., Diningrum, A., Jati, S.N., & Nasip, M. 2018. Risk Factors of Autism Spectrum Disorder (ASD). Unnes Journal of Public Health, 8(2): 104-112.
Hwang, S.K., & Charnley, H. 2010. Making the familiar strange and making the strange familiar: Understanding Korean children’s experiences of living with an autistic sibling. Disability & Society, 25(5): 579–592.
Jasmin, E., Couture, M., McKinley, P., Reid, G., Fombonne, E., & Gisel, E. 2009. Sensori-motor and daily living skills of preschool children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 39(2): 231–241.
Jegatheesan, B., Miller, P.J., & Fowler, S.A. 2010. Autism From a Religious Perspective : A Study of Parental Beliefs in South Asian Muslim Immigrant Families. Hammill Institute on Disabilities, 25(2): 98-109.
Judarwanto. 2015. Jumlah penderita autis di Indonesia. Retrieved from https://klinikautis.com/2015/09/06/jumlah-penderita-autis-di-indonesia. Accessed on April 2018.
Kok, J.K., & Gan, C.C. 2012. Narrative from the Care Givers of Autism Spectrum Disorder Children in Malaysia. International Proceedings of Economics Development and Research, 48: 193-197. DOI: 10.7763/IPEDR.V48. 40.
Mandell, D., & Novak, M. 2005. The role of culture in families’ treatment decisions for children with autism spectrum disorders. Mental Retardation and Developmental Disabilities Research Reviews, 11: 110-115.
Nuner, J.E., & Griffith, A.C.S. 2011. Early Signs of Autism How to Support Families and Navigate Referral Procedures. Dimensions of Early Childhood, 39(1): 12-20.
Pitten, K. 2008. How cultural values influence diagnosis, treatment and the welfare of families with an autistic child. InSight: Rivier Academic Journal, 4(1): 1–5.
Riany, Y.E, Cuskelly, M., & Meredith, P. 2016. Cultural beliefs about autism in Indonesia. International Journal of Disability, Development and Education, 63(6): 623-640.
Samadi S.A., & McConkey, R. 2011. Autism in developing countries: lessons from Iran. Autism Research and Treatment, 145359: 1-11
Scheuermann, B., & Webber, J. 2002. Autism: Teaching does make a difference. Belmont, CA: Wadsworth.
Shaked, M., & Bilu, Y. 2006. Grappling with affliction: Autism in the Jewish Ultra Orthodox community in Israel. Culture, Medicine and Psychiatry, 30: 1–27.
Tait, K.J., & Mundia, L. 2012. The impact of a child with autism on the Bruneian family system. Int. J. Spec. Educ. 27: 199–212.
World Health Organization. 2013. Autism spectrum disorders & other developmental disorders: From raising awareness to building capacity. Geneva, Switzerland: World Health Organization.
Zablotsky, B., Black, L.I., Maenner, M.J., Schieve, L.A., & Blumberg, S.J. 2015. Changes in the 2014 National Health Interview Survey. National Health Statistics Report, Number 87, November 13.