Parenting Stress of Mothers in Children with Autism Spectrum Disorder: A Review of the Culture in Indonesia
DOI:
https://doi.org/10.18502/kss.v3i5.2349Abstract
Culture is a set of beliefs on the individual in a group. Culture also provided the means for interaction between parents and children. Cultural diversity in each country influences the way parents in caring for their children. There are some cultures that people, in general, have accepted the condition of children with autism spectrum disorders, but the community hasn’t been able to accept the presence of these children, so that will affect the acceptance and the joys of motherhood within the optimizing growing flower child. However, not all mothers are able to accept her daughter and happy with her care to experience the stress of caregiving. Indonesia with the complexity of culture also influenced the style of mothering, as two large tribes in Indonesia i.e. Batak and Javanese. The purpose of this study is to explore the issues about parenting stress and positive emotions in mother with autism spectrum disorder in Javanese and Batak culture.
Keywords: Autism Spectrum Disorder, Batak, Cross-cultural Parenting, Javanese, Mother, Parenting Stress
References
American Psychiatric Association. Diagnostic and statistical manual of mental disorder, 5th ed. American Psychiatric Association, Washingthon DC; 2013. p. 50–59. http://dsm.psychiatryonline.org/doi/book/10.1176/appi.books. 9780890425596
American Psychiatric Association. Diagnostic and statistical manual of mental disorder, 4th ed. American Psychiatric Association, Washingthon DC; 2000. p. 69–75. http://dsm.psychiatryonline.org/doi/abs/10.1176/appi.books. 9780890420249.dsm-iv-tr
Sharpley CF, Bitsika V, Efremidis B. Influence of gender, parental health and perceived expertise of assistance upon stress, anxiety and depression among parents of children with autism. Journal of Intellectual & Developmental Disability 1997;22:19–28. http://www.tandfonline.com/doi/pdf/10.1080/ 13668259700033261
Hayes SA, Watson SL. The impact of parenting stress: A metaanalysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders 2013;43(3):629–642. https://www.ncbi.nlm.nih.gov/pubmed/22790429
Benson PR. The impact of child symptom severity on depressed mood among parents of children with ASD: The mediating role of stress proliferation. Journal of Autism and Development Disorders 2006;36:685–695. https://link.springer. com/article/10.1007/s10803-006-0112-3
Bromley J, Hare DJ, Davison K, Emerson E. Mothers supporting children with autistic spectrum disorders: Social support, mental health status and satisfaction with services. Autism 2004; 8(4):409–423. http://journals.sagepub.com/doi/abs/ 10.1177/1362361304047224
Davis NO, Carter AS. Parenting stress in mothers and fathers of toddlers with autism spectrum disorder: Associations with child characteristic. Journal of Autism and Developmental Disorders 2008;38(7):1278–1291. https://www.ncbi.nlm.nih.gov/ pubmed/18240012
Hastings RP, Johnson E. Stress in UK families conducting intensive home-based behavioral intervention for their young child with autism. Journal of Autism and Developmental Disorders 2001;31:327–336. https://link.springer.com/article/ 10.1023/A:1010799320795
Konstantareas MM, Papageorgiou V. Effects of temperament, symptom severity and level of functioning on maternal stress in Greek children and youth with ASD. Autism 2006;10(6):593–607. http://journals.sagepub.com/doi/abs/ 10.1177/1362361306068511
Deater-Deckard K. Parenting stress and child adjustment: Some old hypotheses and new questions. Clinical Psychology: Science and Practice 2004;5(3):314–332. http://onlinelibrary.wiley.com/doi/10.1111/j.1468-2850.1998.tb00152.x/ abstract
Gau SS, Chou M, Chiang H, Lee JC, Wong CC, Chou WJ, et al. Parental adjustment, marital relationship and family function in families of children with autism. Research in Autism Spectrum Disorders 2012;6(1):263–270. http://www.sciencedirect.com/ science/article/pii/S1750946711000900#
Brobst JB, Clopton JR, Hendrick SS. Parenting children with autism spectrum disorders: the couple’s relationship. Focus on Autism and Other Developmental Disabilities 2009;24:38–49. http://journals.sagepub.com/doi/pdf/10.1177/ 1088357608323699
Hartley SL, Seltzer MM, Head L, Abbeduto L. Psychological wellbeing in fathers of adolescents and young adults with down syndrome, fragile x syndrome and autism. Family Relations 2012;61:327–342. http://onlinelibrary.wiley.com/doi/ 10.1111/j.1741-3729.2011.00693.x/full
Hastings RP. Child behavior problems and partner mental health as correlates of stress in mothers and fathers of children with autism. Journal of Intellectual Disability Research 2003;47(4–5):231–237. http://onlinelibrary.wiley.com/doi/ 10.1046/j.1365-2788.2003.00485.x/abstract
Osborne LA, Reed P. Stress and self-perceived parenting behaviors of parents of children with autistic spectrum conditions. Research in Autism Spectrum Disorders 2010;4(3):405–414. http://www.sciencedirect.com/science/article/ pii/S1750946709001147
Kazdin AE. Child, parent and family dysfunction as predictors of outcome in cognitive behavioral treatment of antisocial children. Behaviour Research and Therapy 1995;33(3):271–281. https://www.sciencedirect.com/science/article/ pii/000579679400053M
Osborne LA, McHugh L, Saunders. Parenting stress reduces the effectiveness of early teaching interventions for autistic spectrum disorders. Journal of Autism and Developmental Disorders 2008;38(6):1092–1103. https://link.springer. com/article/10.1007/s10803-007-0497-7
Lecavalier L, Leone S, Wiltz J. The impact of behaviour problems on caregiver stress in young people with autism spectrum disorders. Journal of Intellectual Disability Research 2006;50(3):172–183. https://www.ncbi.nlm.nih.gov/pubmed/16430729
Karst J, Van Hecke AV. Parent and family impact of autism spectrum disorders: A review and proposed model for intervention education. Clinical Child and Family Psychology Review 2012;15(3):247–277. https://www.ncbi.nlm.nih.gov/pubmed/ 22869324
Kitayama S, Cohen D. Handbook of cultural psychology. The Guildford Press, New York; 2007. p. 800–801. https://www.guilford.com/books/ Handbook-of-Cultural-Psychology/Kitayama-Cohen/9781606236116/reviews
Brooks JB. The process of parenting, 8th edn. McGraw-Hill Companies, New York; 2011. p.127–128. https://www.textbooks.com/ Process-of-Parenting-8th-Edition/9780073378763/Jane-B-Brooks.php
Marsella A.J. Culture-bound disorders. In: The encyclopedia of spycology. A.Kazdin (Ed). American Psychopatological Association Press, Washington, DC; 2000. p. 407– 410. http://www.apa.org/pubs/books/4600100.aspx
Corrigan P, McCorkle B, Schell B, Kidder K. Religion and spirituality in the lives of people with serious mental illnes. Community Mental Health Journal 2003; 39 (6):487–49. https://www.ncbi.nlm.nih.gov/pubmed/14713056
Haj-Yahia MM, Sadan E. Issues in intervention with battered women in cillectivist societies. Journal of Marital and Family Therapy 2008;34(1):1–13. https://www. ncbi.nlm.nih.gov/pubmed/18199177
Tucker AC. Interpreting and Treating Autism in Javanese Indonesia. [Dissertation]. University of California, Los Angales (2013). p.46–50. https://escholarship.org/ uc/item/0wh189mq
Marsella AJ, Austin A, Grant B. Social change and psychosocial adaptation in the Pasific Island. In: Handbook of cultural psychology. Kitayama S, Cohen D (Eds). The Guildford Press, New York; 2007. p.803. https://www.amazon.com/ Handbook-Cultural-Psychology-Shinobu-Kitayama/dp/1606236113
Deater-Deckard K. Parenting stress and child adjustment: some old hypotheses and new questions. Clinical Psychology: Science and Practice, 2004; 5(3):1– 2. http://onlinelibrary.wiley.com/doi/10.1111/j.1468-2850.1998.tb00152. x/abstract
Phelps KW, McCammon SL, Wuensch KL, Golden JA. Enrichment, stress, and growth from parenting an individual with an autism spectrum disorder. Journal of Intellectual and Developmental Disability 2009;34(2):133–141. https://www.ncbi. nlm.nih.gov/pubmed/19404834
Abidin RR. Parenting stress index: Professional manual. 3rd ed. Psychological Assessment Resources, Florida; 1995.p.30. http://www.nctsn.org/content/ parenting-stress-index-short-form
Gray DE. Everybody just freezes, everybody is just embarrassed: Felt and enacted stigma among parents of children with high functioning autism. Sociology of Health and Illness 2002;24(6):734–749. http://onlinelibrary.wiley.com/doi/10.1111/ 1467-9566.00316/abstract
Moes D, Koegel RL, Schreibman L, Loos LM. Stress profiles for mother and fathers of children with autism. Psychological Reports 1992;71:1272–1274. http://journals. sagepub.com/doi/abs/10.2466/pr0.1992.71.3f.1272
Gray DE. Coping over time: The parents of children with autism. Journal of Intellectual Disability Research 2006;50:970–976. http://onlinelibrary.wiley. com/doi/10.1111/j.1365-2788.2006.00933.x/abstract
Sastry A, Aguirre B. Parenting your child with Autism. New Harbinger Publications Inc., Oakland; 2012. p.71–75. https://www.newharbinger.com/ parenting-your-child-autism
Hughes DA, Baylin J. Brain-Based Parenting. The neuroscience of caregiving for healthy attachment. W.W Norton & Company Inc, New York; 2012.p.3–5. http: //books.wwnorton.com/books/Brain-Based-Parenting/
Ambady N, Bharucha J. Culture and the brain. Current Directions in Psychological Science 2009;18(6):342–345 http://journals.sagepub.com/doi/abs/10.1111/j. 1467-8721.2009.01664.x
Pizzagalli DA. Frontocingulate dysfunction in depression: Toward biomarkers of treatment response. Neuropsychopharmacology 2010;36:1–24. https://www.ncbi. nlm.nih.gov/pubmed/20861828
Stuss DT, Gallup GG, Alexander MP. The frontal lobes are necessary for theory of mind. Brain 2001;124:279–286. https://www.ncbi.nlm.nih.gov/pubmed/11157555
Mayberg HS. Modulating dysfunctional limbic-cortical circuits in depression: Towards development of brain-based algorithms for diagnosis and optimised treatment. British Medical Bulletin 2003; 65:193-207. https://www.ncbi.nlm.nih. gov/pubmed/12697626
Graybiel AM, Aosaki T, Flaherty AW, Kimura M. The basal ganglia and adaptive motor control. Science 1994;265:1826–1831. https://www.ncbi.nlm.nih.gov/ pubmed/8091209
Kalat JW. Biopsikologi [Biological psychology]. 9th ed. Salemba Humanika, Jakarta; 2007. p.137 [in Bahasa Indonesia]. https://www.belbuk.com/ biopsikologi-buku-1-edisi-9-p-12071.html
Cohen DJ, Volkmar FR. Handbook of autism and developmental disorders. Wiley, New York; 1997. p.419-427. http://onlinelibrary.wiley.com/book/10.1002/ 9781118911389
Centers for Disease Control and Prevention. Prevalence of autism spectrum disorder among children aged 8 years: Autism and developmental disabilities monitoring network. Morbidity and Mortality Weekly Report 2014;63:1–21. https://www.ncbi. nlm.nih.gov/pubmed/24670961
Kementerian Pendidikan dan Kebudayaan Indonesia. Pembangunan pusat layanan autis (PLA) di Indonesia [Development of autism services center (PLA) in Indonesia]. Direktorat Pembinaan Pendidikan Khusus dan Layanan Khusus Pendidikan Dasar Direktorat Jenderal Pendidikan Dasar; 2014. p.3–5 [in Bahasa Indonesia]. http://perpustakaan.kemdikbud.go.id/opac/index.php?p=show_ detail&id=37334&keywords=
Skinner D, Weisner TS. Sociocultural studies of families of children with intellectual disabilities. Mental Retardation and Developmental Disabilities Research 2007;13:302–331. https://www.ncbi.nlm.nih.gov/pubmed/17979204
Ling CYM, Mak WWS, Cheng JNS. Attribution model of stigma towards children with autism in Hong Kong. Journal of Applied Research in Intellectual Disabilities, 2010;23: 237–249. http://onlinelibrary.wiley.com/doi/10.1111/j.1468-3148. 2008.00456.x/abstract
Mak WWS, Ho AHY, Law W. Sense of coherence, parenting attitudes and stress among mothers of children with autism in Hong Kong. Journal of Applied Research in Intellectual Disabilities, 2007;20: 157–167. http://onlinelibrary.wiley.com/doi/ 10.1111/j.1468-3148.2006.00315.x/abstract
Shu BC. Quality of life of family caregivers of children with autism: The mother’s perspective. Autism, 2009;13: 81–91. https://www.ncbi.nlm.nih.gov/pubmed/ 19176578
You HK, McGraw LA. The intersection of motherhood and disability: Being a “good” Korean mother to an imperfect child. Journal of Comparative Family Studies 2011;42(4):579–598. https://www.jstor.org/stable/41604469?seq=1#page_ scan_tab_contents
Shin JK. Help-seeking behaviors by Korean immigrants for depression. Issues in Mental Health Nursing 2002;23:461–476. https://www.ncbi.nlm.nih.gov/pubmed/ 12079599
Lee KK. Confucian tradition in the contemporary Korean family. In: Confucianism and the family. Slote WH, Devos GA, (Eds.). State University of New York Press, Albany, New York; 1998. p. 249–266. https://books.google.co.id/books/about/ Confucianism_and_the_Family.html?id=PSl01JK7dWcC&redir_esc=y
Kang SY, Howard D, Kim J, Payne JS, Wilton L, Kim W, et al. English language proficiency and lifetime mental health service utilization in a national representative sample of Asian Americans in the USA. Journal of Public Health, 2010;32(3): 431–439. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2924787/
Chiang H. A parent education program for parents of chinese american children with autism spectrum disorder (ASDs): a pilot study. Focus on Autism and;Other Developmental Disabilities 2014;29(2):88–94. http://journals.sagepub.com/doi/abs/ 10.1177/1088357613504990
Giallo R, Wood C, Jellet R, Porter R. Fatigue, wellbeing and parental self-efficacy in mothers of children with an Autism Spectrum Disorder. Autism 2011. 17(4), 465–480. https://www.ncbi.nlm.nih.gov/pubmed/21788255
Huang Y, Ososkie J, Hsu T. Impact on marital and sibling relationships of Taiwanese families who have a child with a disability. Journal of Comparative Family Studies 2011;42(2):213–232. https://www.jstor.org/stable/41604433?seq=1# page_scan_tab_contents
Casmini. Kecerdasan emosi dan kepribadian sehat dalam konteks budaya Jawa di Yogyakarta [emotional intelligence and healthy personality on the Javanese perspective of Yogyakarta]. [Dissertation] Universitas Gadjah Mada (2011). p. 2–5. [in Bahasa Indonesia]. http://etd.repository.ugm.ac.id/index.php? mod=penelitian_detail&sub=PenelitianDetail&act=view&typ=html&buku_id= 51607&obyek_id=4
Rachmatullah A. Filsafat hidup orang Jawa ( Javanese philosophy of life). Siasat Pustaka, Yogyakarta; 2011. p.51–53. [in Bahasa Indonesia]. http://ucs.salatiga. go.id/index.php?p=show_detail&id=14708
Endraswara S. Berpikir positif orang Jawa [Positive thingking of Javanese people]. Narasi, Yogyakarta; 2017. p.25–28. [in Bahasa Indonesia]. https://www.belbuk. com/berpikir-positif-orang-jawa-p-55307.html
Koentjaraningrat. Pengantar ilmu antropologi [Introduction to anthropology]. Aksara Baru, Jakarta; 1983. p.230–251. [in Bahasa Indonesia]. https://www. goodreads.com/book/show/9719459-pengantar-ilmu-antropologi
Forrester MA.. Doing Qualitative Research in Psychology. A practical guide. Sage Publications, London; 2010. p.135–153. https://uk.sagepub.com/en-gb/asi/ doing-qualitative-research-in-psychology/book233180
Martiarini N. Pengatasan kelelahan ego[ego depletion] pada individu dalam konteks budaya Jawa [overcome ego depletion amongst Javanese people,Thesis] Universitas Gadjah Mada (2012) p.33–35 [in Bahasa Indonesia]. http://etd.repository.ugm.ac.id/index.php?mod=penelitian_detail&sub= PenelitianDetail&act=view&typ=html&buku_id=56441&obyek_id=4
Tinambunan D. Orang Batak kasar? membangun citra dan karakter [Batak people rude? building the image and character]. Elex Media Komputindo, Jakarta; 2010. p.vii–x. [in Bahasa Indonesia]. http://books.google.co.id/books/about/Orang_ Batak_kasar.html?id=LNTagbGmKWoC&redir_esc=y
Harahap BH, Saihaan, HM. Orientasi nilai-nilai budaya Batak [Batak cultural orientation]: Suatu pendekatan terhadap prilaku Batak Toba dan Angkola-Mandailing [behavioral approach of Batak Toba dan Angkola-Mandailing]. Sanggar Willem Iskandar, Jakarta; 1987. p.133. https://catalogue.nla.gov.au/Record/264371