研究生: |
戴珊珊 Tay, San-San |
---|---|
論文名稱: |
與你同行:父母教養自閉症兒的心路歷程之敘事探究 Being with You: A Narrative Research about The Journey of Parents Raising a Child with Autism |
指導教授: |
鄔佩麗
Wu, Pei-Li |
口試委員: |
張正芬
Chang, Cheng-Fen 黃素菲 Huang, Su-Fei 鄔佩麗 Wu, Pei-Li |
口試日期: | 2022/11/24 |
學位類別: |
碩士 Master |
系所名稱: |
教育心理與輔導學系 Department of Educational Psychology and Counseling |
論文出版年: | 2023 |
畢業學年度: | 111 |
語文別: | 中文 |
論文頁數: | 188 |
中文關鍵詞: | 自閉症 、自閉症兒的父母 、心路歷程 |
英文關鍵詞: | autism, parents of child with autism, psychological process |
研究方法: | 敘事分析 |
DOI URL: | http://doi.org/10.6345/NTNU202300014 |
論文種類: | 學術論文 |
相關次數: | 點閱:146 下載:23 |
分享至: |
查詢本校圖書館目錄 查詢臺灣博碩士論文知識加值系統 勘誤回報 |
本研究的目的為探究父母在教養自閉症兒成長過程中的心路歷程,以及在過程對於親職角色的分配與協調之相關經驗。研究者採用了敘事研究法來進行資料的蒐集與分析,希望透過研究參與者的生命故事敘說以及研究者對故事的理解與詮釋,從中瞭解父母在教養自閉症兒的相關經驗。因此,以立意取樣的方法邀請一對在馬來西亞育有一位自閉症兒的父母成為本研究參與者,並經由半結構式的個別訪談與伴侶訪談蒐集父母在這歷程裡的相關生命經驗。研究者將本研究結果分為兩大部分:
首先,採取「整體—內容」分析法,以第一人稱的方式呈現父親與母親個別在教養自閉症兒的生命經驗故事;並以第三人稱的方式呈現父母共同在教養自閉症兒歷程裡在親職角色上的分配與協調之相關經驗。
另,採取「類別—內容」分析法貫穿替代文本裡的不同主題,分別呈現父親與母親在教養自閉症兒成長階段裡的心理變化、面對的挑戰與因應方式、擁有的支持系統與資源、父母在親職角色上的分配與協調,以及彼此間日常的互動與方式與協調。
綜合上述,本研究發現茲列述如下:(1)父母在教養自閉症兒的歷程中心理上難免會出現一些防衛機制,而在這歷程裡父母的內在與外在將經歷不同階段變化的調試歷程,同時基於性別與親職角色的不同,雙方所經歷的內在感受也會存有一定的差異;(2)父母雙方在這歷程裡主要面對的挑戰包括欠缺對自閉症的瞭解、醫療與治療的相關問題、生活的調整、父母各自原生家庭成員的涉入影響、自閉症兒的學業與生涯規劃、社會資源的匱乏等;(3)父母採用的因應策略包括問題焦點的因應策略,當中採用最多的方式為主動因應,以及情緒焦點的因應策略,當中採用最多的因應方式為尋求情緒性的社會支持;(4)雙方在親職角色上的分配與協調主要以分工與共親職為主,固定或一致性的親職角色分配對自閉症兒的行為會有直接的影響, 而且雙方的共同合作、溝通、信任、以及相互陪伴、鼓勵與支持彼此的程度亦增強其效益。
最後,依據本研究結果與結論,對未來的研究、相關的專業人士、以及自閉症兒的父母提出具體的相關建議。
The purpose of this study is to explore the psychological process of parents in raising a child with autism, and how they coordinate their parental roles throughout the process. This study adopted the narrative research method for data collection and analysis, hoping to acquire through the narrative stories shared by the research participants and the interpretation and analysis of the story by the researcher, an in-depth understanding of their relevant experiences as parents in raising a child with autism. A purposive sampling method was used and the participants selected for this study were a couple from Malaysia whose child was diagnosed with autism. Semi-structured interviews were conducted to understand the parents' life experiences along the child-raising process. The main features of outcome in this study are as follows:
First of all, the researcher adopted the “holistic-content” analysis to present the respective life experiences of the father and the mother in raising an autistic child from a first-person perspective. A third person perspective method was also used for presenting their interactive experiences and the allocation and coordination of parenting roles in the process of raising a child with autism.
Secondly, the “categorical-content” analysis method was applied to identified thematic changes in the psychological process change of the father and the mother in raising an autistic child, the challenges and coping methods, the support system and resources, the relationship between husband and wife, and also the assignment and coordination of parenting roles.
The findings of this study are summarized as follows: (1) In the process of raising a child with autism, there were times when defence mechanisms were inevitably triggered, and throughout the process, parents might experience both internal and external adjustments at different stages of change. At the same time, parents might have distinctively different feelings due to their differences in gender and parental roles. (2) The main challenges that parents faced throughout the process were the lack of knowledge about the autism, medical and therapy related issues, adjustments in life, the involvement of the father and the mother’s primary family members, issues related to educational and career arrangements, the lacking of social resources, and others. (3) The primary coping methods of the parents were problem-focused coping strategies, of which the most frequently used were the active coping methods, and the emotional-focused coping strategies, mostly for seeking emotional social support. (4) The distribution and coordination of parenting roles of the father and the mother were mainly for roles sharing and co-parenting. A fixed and consistent parenting roles assignment had direct impacts on the behaviour of the autistic child. Additionally, the cooperation, communication, trust, companionship, encouragement, and support for each other also enhanced the effectiveness of parenting roles.
Based on the research findings, this study also offered suggestions for future research, relevant professionalism and parents who have children with autism.
American Psychiatric Association(2014):《DSM-5精神疾病診斷準則手冊》(臺灣精神醫學會譯)。合記圖書。(原著出版年:2013)
Lieblich, A., Tuval-Mashiach, R., & Zilber, T.(2008):《敘事研究:閱讀、分析與詮釋》(吳芝儀譯)。濤石文化。(原著出版年:1998)
Merriam, S. B.(2011):《質性研究:實際與施作指南》(顏寧譯)。五南圖書。(原著出版年:2009)
Riessman, K. C.(2003):《敘說分析》(王勇智、鄧明宇譯)。五南圖書。(原作著出版年:1993)
王南凱、吳岱穎、鄒國蘇、黃宜靜、郭冠良、吳逸帆、 陳建志(2013):〈淺談自閉症類群障礙〉。《北市醫學雜誌》,10,173–181。https://doi.org/10.6200/TCMJ.2013.10.3.01
王裕仁(2010):《學齡前與學齡自閉兒童之父母親職壓力之研究》(未出版碩士論文),國立臺北教育大學。
文崇一、楊國樞(2000):《社會及行為科學研究法下冊:訪問調查法》。東華。
丘彥南、賴孟泉、徐如維、劉弘仁(2011):〈兒童青少年精神疾病工作小組報告之一:自閉症類群障礙、溝通障礙症、智能發展障礙症、注意力不足過動症之DSM-5草案內容相較於DSM-4之變革〉。《臺灣精神醫學會通訊》,3(1),17–21。
史馥綺、王玉珍(2014):〈最溫柔的戰士:一位自閉症者的父親之父職經驗敘說研究〉。《國民教育》,53(6),57–70。
杜采蓉 (2012):《星繫父子情:泛自閉症障礙學童父職參與親職的經驗歷程》(未出版碩士論文),輔仁大學。
吳佳賢(2002):《學前自閉症兒童主要照顧者照顧負荷、社會支持與心理健康之相關研究》(未出版碩士論文),國立暨南大學。
吳紹寧 (2017):《自閉症兒父親教育心理歷程之敘事研究》(未出版之碩士論文),國立臺東大學。
何華國(2002):《特殊兒童親職教育》。五南圖書。
宋維村(2000):《自閉症學生輔導手冊》。國立臺南師範學院。
宋鴻燕(2008a):〈支持自閉症幼兒家庭的關係網路〉。《應用心理研究》,38,173–207。
宋鴻燕(2008b):《自閉症—早期介入與家庭支持》。心理出版社。
宋麗玉、曾華源、施教裕、鄭麗珍(2012):《社會工作理論:處遇模式與案例分析》。洪葉。
林淑馨(2010):《質性研究:理論與實務》:巨流。
姜忠信、宋維村(2001):〈自閉症的精神病理學:回顧與前瞻〉。《臺灣精神學》,15,169–182。
唐先梅 (1999a):〈從家務工作的本質談雙薪家庭夫妻家事分工〉。《應用心理研究》, 4,131–173。
唐先梅 (1999b):〈雙薪家庭工作、公平觀、與夫妻關係滿意度之研究〉。《中華家政學刊》,28,16–30。
莫少依、張正芬(2014):〈不共脈絡性:輕症自閉症學生的人際互動特徵〉。《特殊教育研究學刊》,39(2),33–59。http://doi.org/10.6172/BSE.201407.3902022
張文淵(2003):〈自閉症的病因、診斷及心理干預〉。《中國特殊教育》,39(23),71–75。
張英熙 (2012)。〈特殊兒童家長的失落經驗〉。《特殊教育季刊》,82,16–22。
張英熙、吳珍(2001):〈特殊兒童家長支持團體效果初探〉。《特殊教育季刊》,80, 30–34。
郭生玉(2012):《心理與教育研究法》精華。
胡幼慧(2008):《質性研究:理論、方法與本土女性研究實例》。巨流。
許育光(2000):〈敘說研究的初步探討:從故事性思考和互為主題的觀點出發〉。《輔導季刊》,36,17–26。
寇克倫(2006):《敘事取向的生涯諮商》(黃素菲譯)。張老師。(原著出版年:1997)
章秉純、徐如維 (2017):〈簡述「自閉症類群障礙症」之診斷、臨床特徵與病因學研究〉。《臨床醫學》, 79, 158–162。https://doi.org/10.6666/ClinMed.2017.79.3.029
梁偉岳(2004):〈她是我一生的課題:一位自閉症青年母親的養育經驗〉。《特殊教育與複健學報》,12,257–281。
陳惠玲(2011):《走過生命轉彎處:一位單親母親教養自閉兒的心路歷程》(未出版碩士論文),國立臺東大學。
陳富美、利翠珊(2004):〈夫妻的育兒經驗:親職分工與共親職的探討〉。《中華心理衛生學刊》,17(4),1–28。https://dx.doi.org/10.30074/FJMH.200412_17(4).001
常善媚(2003):《自閉症青少年母親的枷鎖》(未出版碩士論文),國立成功大學。
黃金源(2003):〈泛自閉症障礙兒童〉。《國立臺中教育大學特殊教育論文集》,9202,41–61。
黃素菲(2017):〈一個來自農村的大陸高校輔導員生涯故事敘說分析〉。《臺灣諮商心理學報》,5(1),33–63。
黃素菲(2018):〈敘事諮商歷程與敘事結構特徵中生活目標改變之詮釋分析〉。《中華輔導與諮商學報》,51,143–180。https://doi.org/10.3966/172851862018040051005
黃浥暐(2018):〈從DSM看自閉症診斷標準演變史〉。月旦醫事法網。 http://www.angle.com.tw/ahlr/discovery/post.aspx?ipost=2817
黃嘉惠(2016):《星事。心事:自閉症兒童母親教養之心路歷程》(未出版碩士論文),國立臺北護理健康大學。
萬文隆(2004):〈深度訪談在質性研究中的應用〉。《生活科技教育月刊》,37(4), 17–23。https://doi.org/10.6232/LTE.2004.37(4).4
楊宗仁、張雯婷、江家榮(2005):《自閉症者家長的實戰手冊:危機處理指南》。心理出版社。
楊孟姍(2011):《自閉症者母親的失落與轉化~一個星媽的自我敘說》(未出版碩士論文),靜宜大學。
詹益梁(2011):《自閉症者父親壓力與因應策略之初探研究》(未出版碩士論文),國立彰化師範大學。
劉毓芬、胡心慈(2005)。〈破繭而出的意義:一位自閉症兒童的母親之心理歷程〉。《特殊教育研究學刊》,29,225–250。http://dx.doi.org/10.6172/BSE200509.2901011
潘淑滿(2003):《質性研究:理論與應用》。心理出版社。
蔡雅鈴(2006):《不同家庭生命週期親子壓力之研究》(未出版碩士論文),國立嘉義大學。
賴孟泉(2014):〈DSM-5出版後關於自閉症類群診斷的迴響與反思〉。《臺灣精神醫學會通訊》,4,11–14。
戴郁庭(2007):《推開另一扇們聽見花開的聲音:照顧自閉症兒童母親的心路歷程》(未出版碩士論文),中國文化大學。
謝翠菊、薛雅文(2005):〈自閉症兒童自傷行為觀察及介入處理探討〉。《國小特殊教育》,39,33–40。
顏瑞隆、張正芬(2014):〈臺灣自閉症家庭碩博士論文回顧與分析〉。《中華民國特殊教育學會年刊》,247–262。
羅國英(2000):〈母親教養期望與親職壓力及青少年親子關係知覺的關聯—兼談學業成就於其中的角色〉。《東吳社會工作學報》,6,35–72。
藹德部落(2021年11月14日):〈特殊教育:了解馬來西亞特殊教育模式—特殊教育學院,特殊加油融合班,融合教育,全納教育,特殊教育需求,三分鐘系列〉〔影片〕。YouTube。https://youtu.be/0OyRh-M3Xos
Abidin, R. R. (1982). Parenting stress and the utilization of pediatric services. Children’s Health Care, 11(2), 70–73. https://doi.org/10.1207/s15326888chc1102_5
Abidin, R. R. (1986). Parenting Stress Index (PSI) manual (2nd ed.). Pediatric Psychology Press.
Abidin, R. R. (1990). Introduction to the special issue: The stresses of parenting.
Journal of Clinical Child Psychology, 19, 298–301. https://doi.org/10.1207/s15374424jccp1904_1
Abidin, R. R. (1992). The determinants of parenting behavior. Journal of Clinical Child Psychology, 21, 407–412. https://doi.org/10.1207/s15374424jccp2104_12
Alhorany, A. K., Hassan, S. A., & Bataineh, M. Z. (2013). A review on factors affected Marital Adjustment among parents of autistic children and gender effects. Life Science Journal, 10(1), 400–405.
Alshoura, H. (2021). Critical review of special needs education provision in Malaysia: Discussing significant issues and challenges faced. International Journal of Disability, Development and Education. Advance online publication. https://doi.org/10.1080/1034912X.2021.1913718
American Psychiatric Association. (1987). Diagnostic and statistical manual of mental disorders revised (DSM-III-R). American Psychiatric Publication.
American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). American Psychiatric Publication.
American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., Text Revision). American Psychiatric Publication.
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). American Psychiatric Publication. https://doi.org/10.1176/appi.books.9780890425596
Anyanwu, J. I., Onuigbo, L. N., Obiyo, N. O., Exe, U. N., Akaneme, I. N., Aye, E. N., Enyi, C., Oforka, T. O., Chigbu, B. C., Exenwaji, I. O., Ogbuabor, S. E., & Adimora, E. D. (2019). Parenting stress in families of children with autism spectrum disorder: The roles of the extended family. Global Journal of Health Science, 11, 51–60. https://doi.org/10.5539/gjhs.v11n8p51
Argumedes, M., Lanovaz, M. J., & Larivee, S. (2018). Brief report: Impact of challenging behavior on parenting stress in mothers and fathers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 48, 2585–2589. https://doi.org/10.1007/s10803-018-3513-1
Autism Advocate. (2011, January 10). Where we have been and where we are going: The autism society’s proud history. Autism Society History. https://www.autism-society.org/wp-content/uploads/2014/04/autism-society-history.pdf
Baio, J. (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.
Baio, J., Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z., Kurzius-Spencer, M., Zahorodny, W., Rosenberg, C. R., White, T., Durkin, M. S., Imm, P., Nikolaou, L., Yeargin-Allsopp, M., Lee, L.-C., Harrington, R., Lopez, M., Firzgerald, R. T., Hewitt, A., ... Durkin, M. S. (2018). Prevalence of autism spectrum disorder among children aged 8 years–autism and developmental disabilities monitoring network, 11 sites, United States, 2014. Morbidity and Mortality Weekly Report, Surveillance Summaries, 67(6), 1–23. https://doi.org/10.15585/mmwr.ss6706a1
Belsky, J., Hsieh, & K.-H. (1998). Patterns of marital change during the early childhood years: Parent personality, coparenting, and division- of – labor correlates. Journal of Family Psychology, 12(4), 511–528.
Benderix, Y., & Sivberg, B. (2007). Siblings’ experiences of having a brother or sister with autism and mental retardation: A case study of 14 siblings from five families. Journal of Pediatric Nursing, 22, 410–418. https://doi.org/10.1016/j.pedn.2007.08.013
Bernier, A. S. & McCrimmon, A. W. (2022). Attitudes and perceptions of Muslim parents toward their children with autism: A systematic review. Review Journal of Autism and Development Disorders, 9, 320–333. https://doi.org/10.1007/s40489-021-00256-9
Bickman, L., & Rog. D. J. (Ed.). (1998). Handbook of applied social research methods. SAGE Publications.
Bitsika, V., & Sharpley, C. F. (2004). Stress, anxiety and depression among parents of children with autism spectrum disorder. Australian Journal of Guidance and Counseling, 14, 151–161. https://doi.org/10.1017/S1037291100002466
Branum-Martin, L., Tao, S., Garnaat, S., Bunta, F., & Francis, D. J. (2012). Meta-analysis of bilingual phonological awareness: Language, age, and psycholinguistic grain size. Journal of educational psychology, 104(4), 932–944. https://doi.org/10.1037/a0027755
Broady, T. R., Stoyles, G. J., & Morse, C. (2017). Understanding careers’ lived experience of stigma: The voice of families with a child on the autism spectrum. Health and Social Care in the Community, 25, 224–233. https://doi.org/10.1111/hsc.12297
Brobst, J. B., Clopton, J. R., & Hendrick, S. S. (2009). Parenting children with autism spectrum disorders: The couple relationship. Focus on Autism and Other Developmental Disabilities, 24, 38–49. https://doi.org/10.1177/1088357608323699
Burrell, L., & Borrego, J., Jr. (2012). Parents’ involvement in ASD treatment: What is their role? Cognitive and Behavioral Practice, 19, 423–432. https://doi.org/10.1016/j.cbpra.2011.04.003
Carr, E. G., & Durand, V. M. (1985). Reducing behavior problems through functional communication training. Journal of Applied Behavior Analysis, 18, 111–126. https://doi.org/10.1901/jaba.1985.18-111
Carver, C. S., Scheier, M. F., & Weintraub, J. K. (1989). Assessing coping strategies: A theoretically based approach. Journal of Personality and Social Psychology, 56, 267–283. https://doi.org/10.1037/0022-3514.56.2.267
Cassidy, S. A., Robertson, A., Townsend, E., O’Connor, R., & Rodgers, J. (2020). Advancing our understanding of self-harm, suicidal thoughts and behavior in autism. Journal of Autism and Developmental Disorder, 50, 3445–3449. https://doi.org/10.1007/s10803-020-04643-9
Cheng, A. (2020). Benefits of nonpharmacological and pharmacological treatment in autistic children [Nursing senior thesis]. Dominican University of California. https://doi.org.10.33015/dominican.edu/2019.NURS.ST.04
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, 343–352. https://doi.org/10.1177/1362361315584464
Christensen, D. L., Baio, J., Braun, K. V. N., Bilder, D., Charles, J., Constantino, J. N., Daniel, J., Durkin, M. S., Fitzgerald, R. T., Kurzius-Spencer, M., Lee, L.-C., Pettygrove. S., Robinson, C., Schulz, E., Wells, C., Wingate, M. S., Zahorodny, W., & Yeargin-Allsopp, M. (2016). Prevalence and characteristics of autism spectrum disorder among children aged 8 years–autism and developmental disabilities monitoring network, 11 sites, United States, 2012. Morbidity and Mortality Weekly Report, Surveillance Summaries, 65(13), 1–23.
Chu, S. Y., Mohd Normal, S. N. S. A. B., McConnell, G. E., Tan, J. S., & Joginder Singh, S. K. D. (2018). Challenges faced by parent of children with autism spectrum disorder in Malaysia. Speech, Language and Hearing 23, 221–331, https://doi.org/10.1080/2050571X.2018.1548678
Chu, S. Y., Khoong, E. S. Q., Ismail, F. N. M., Altaher, A. M., & Razak, R. A. (2019). Speech-language pathology in Malaysia: Perspectives and challenges. Perspective of the ASHA Special Interest Group, 4(3), 1–5. https://doi.org/10.1044/2019_PERS-SIG17-2019-0005
Cohmer, S. (2014). Early infantile autism and the refrigerator mother theory (1943–1970). Embryo Project Encyclopedia. https://hpsrepository.asu.edu/handle/10776/8149
Conger, K. J., Stocker, C., & McGuire, S. (2009). Sibling socialization: The effects of stressful life events and experiences. New Directions in Child and Adolescent Development, 126, 45–59. https://doi.org/10.1002/cd.256
Conner, C., Baker, D. L., & Allor, J. H. (2020). Multiple Language exposure for children with autism spectrum disorder from culturally and linguistically diverse communities. Bilingual Research Journal, 43, 286–303. https://doi.org/10.1080/15235882.2020.1799885
Cook, K. A., & Willmerdinger, A. N. (2015, February 6). The history of autism, Narrative Documents, Book 1. http://scholarexchange.furman.edu/schopler-about/1
Corcoran, J., Berry, A., & Hill, S. (2015). They lived experience of US parents of children with autism spectrum disorders: A systematic review and meta-synthesis. Journal of Intellectual Disabilities, 19, 356–366. https://doi.org/10.11777/1744629515577876
Crowell, J. A., Keluskar, J., & Gorecki, A. (2019). Parenting behavior and the development of children with autism spectrum disorder. Comprehensive Psychiatry, 90, 21–29. https://doi.org/10.1016/j.comppsych.2018.11.007
Davis, N. O., & Carter, A. S. (2008). Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: associations with child characteristics. Journal of Autism and Developmental Disorders, 38, 1278–1291. https://doi.org/10.1007/s10803-007-0512-z
Davis, R. F. III., & Kiang, L. (2018). Parental Stress and religious coping by mother of children with autism. Psychology of Religion and Spirituality, Advance online publication. https://doi.org/10/1037/rel0000183
DePape, A. M., & Lindsay, S. (2015). Parents’ experiences of caring for child with autism spectrum disorder. Qualitative Health Research, 25(4), 569–583. https://doi.org/10.1177/1049732314552455
Dolah, J., Yahaya, W. A. J. W., & Chong, T. S. (2011). A Preliminary Investigation: Potential of Interactive Multimedia Learning Awareness (IMLA) in enhancing awareness of autistic characteristics among parents and society in Malaysia. Journal of Computer Science and Information Technology, 13, 19–25.
Dumas, J. E., Wolf, L. C., Fisman, S. N., & Culligan, A. (1991). Parenting stress, child behavior problems, and dysphoria in parents of children with autism, Down syndrome, behavior disorders, and normal development. Exceptionality: A Special Education Journal, 2, 97–110. https://doi.org/10.1080//09362839109524770
Factor, D. C., Freeman, N. L., & Kardash, A. (1989). Brief Report: A comparison of DSM-III and DSM-III-R criteria for autism. Journal of Autism and Developmental Disorder, 19, 637–640.
Factor, R. S., Swain, D. M., & Scarpa, A. (2018). Child autism spectrum disorder traits and parenting stress: The utility of using a physiological measure of parental stress. Journal of Autism and Developmental Disorder, 48, 1081–1091. https://doi.org/10.1007/s10803-017-3397-5
Farmer, T. W., Pearl, R., & Van Acker, R. M. (1996). Expanding the social skills deficit framework: A developmental synthesis perspective, classroom social network and implications for the social growth of students with disabilities. Journal of Special Education, 30, 232–256.
Folkman, S., & Lazarus, R. S. (1980). An analysis of coping in a middle-aged community sample. Journal of Health and Social Behavior, 21, 219–239.
Gao, Y., Yu, Y., Xiao, J., Luo, J., Zhang, Y., Tian, Y., Zhang, J., Olsen, J., Li, J., & Liew, Z. (2020). Association of grandparental and parental age at childbirth with autism spectrum disorder in children. JAMA Network Open, 3(4), 1–13. https://doi.org/10.1001/jamanetworkopen.2020.2868
Goepfert, E., Mule, C., Hahn, E. V., Visco, Z., & Siegel, M. (2015). Family system interventions for families of children with autism spectrum disorder. Child and Adolescent Psychiatric Clinics, 24, 571–583. http://dx.doi.org/10.1016/j.chc.2015.02.009
Gray, D. E. (2006). Coping over time: The parents of children with autism. Journal of Intellectual Disability Research, 50, 970–976. https://doi.org/j.1365-2788.2006.00933.x
Harris, J. (2018). Leo Kanner and autism: A 75-years perspective. International Review of Psychiatry, 30, 3–17. https://doi.org/10.1080/09540261.2018.1455646
Hastings, R. (2007). Longitudinal relationships between sibling behavioral adjustment and behavioral problems of children with developmental disabilities. Journal of Autism and Developmental Disorders, 37, 1485–1492. https://doi.org/10.1007/s10803-006-0230-y
Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experiences of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Development Disorder, 43, 629–642. https://doi.org/10.1007/s10803-012-1604-y
Holmes, E. & Willoughby, T. (2005). Play behavior of children with autism spectrum disorders, Journal of Intellectual & Development Disability, 30, 156–164. https://doi.org/10.1080/13668250500204034
Hosozawa, M., Sacker, A., & Cable, N. (2021). Timing of diagnosis, depression and self-harm in adolescents with autism spectrum disorder. Autism, 25, 70–78. https://doi.org/10.1177/1362361320945540
Humphrey, N. (2008). Including pupils with autistic spectrum disorders in mainstream schools. Supporting for Learning, 23, 42–47. https://doi.org/10.1111/j.1467-9604.2007.00367.x
Hussin, S., Quek, A. H. & Loh, S. C. (2008, December 8-12). Policy into practice: The challenge for special education in Malaysia [Paper presentation]. International Conference on Experiential Learning, Sydney, Australia. https://eprints.um.edu.my/id/eprint/10347
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, Article 2275. https://doi.org/10.3389/fpsyg.2018.02275
Ilias, K., Liaw, J.H.J., Cornish, K., Park, M.S., Golden, K.J. (2017). Wellbeing of mothers of children with “autism” in Malaysia: An interpretative phenomenological analysis study. Journal of Intellectual & Developmental Disability, 42(1), 74–89. https://doi.org/10.3109/13668250.2016.1196657
Jayanath, S., & Ozonoff, S. (2020). First parental concerns and age at diagnosis of autism spectrum disorder: A retrospective review from Malaysia. Malays Journal Medical Science, 27(5), 78–89. https://doi.org/10.21315/mjms2020.27.5.8
Jegatheesan, B. (2011). Multilingual development in children with autism: Perspective of South Asian Muslim immigrant parents on rasing a child with a communicative disorder in multilingual contexts. Bilingual Research Journal, 34, 185–200. https://doi.org/10.1080/15235882.2011.597824
Jiang, X., Song, M., Qin, W., Xiao, J., Xu, X., Yuan, Q. (2022). Nonpharmaceutical therapy for autism spectrum disorder: A protocol for systematic review and network meta-analysis. Medicine, 101(7), 1–5. https://doi.org/10.1097/MD.0000000000028811
Juhari, R., Yaacob, S. N., & Talib, M. A. (2013). Father involvement among Malay Muslim in Malaysia. Journal of Family Issues, 34, 210–229. https://doi.org/10.1177/0192513X1246139
Kahng, S. W., Iwata, B. A., & Lewin, A. B. (2002). Behavioral treatment of self-injury, 1964 to 2000, American Journal on Mental Retardation, 107, 212–221. https://doi.org/10.1352/0895-8017(2002)107<0212:BTOSIT>2.0CO;2
Kamaralzaman, S., Toran, H., Mohamed, S., & Abdullah, Nazmin. (2018). The economic burden of families with autism spectrum disorders (ASD) children in Malaysia. Journal of ICSAR, 2, 71–77.
Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217–250.
Kanner, L. (1944). Early Infantile Autism. The Journal of Pediatrics, 25, 211–217. https://doi.org/10.1016/S0022-3476(44)80156-1
Kanner, L. (1949). Problems of nosology and psychodynamics of early infantile autism. American Journal of Orthopsychiatry, 19, 416–426. https://doi.org/10.1111/j.1939-0025.1949.tb05441.x
Karst, J. S. & Van Hecke, A.V. (2012). Parent and family impact of autism spectrum disorder: A review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review, 15(3), 247–277. https://doi.org/10.1007/s10567-012-0119-6
Kern, J. K., Trivedi, M.H., Garver, C. R., Grannemann, B. D., Andrews, A. A., Savla, J. S., & Schroedar, J. L. (2006). The pattern of sensory processing abnormalities in autism. Autism, 10, 480–490. https://doi.org/10.1177/1362361306066564
Kerr, D., & Mcintosh, J. B. (2000). Coping when a child has a disability: Exploring the impact of parent to parent support. Child Care Health and Development, 26, 309–322. https://doi.org/10.1046/j.136502214.2000.00149.x
Kilbler, A., & Roman, D. (2013). Insights into professional development for teachers of English language learners: A focos on using students’ native languages in the classroom. Bilingual Research Journal, 36, 187–207. https://doi.org/10.1080/15235882.2013.820226
Koegel, R. L., Bimbela, A., & Scheriebman, L. (1996). Collateral effects of parent training on family interactions. Journal of Autism and Development Disorder, 26, 347–359.
Lai, W. L., & Mackenenzi, A. N. (2002). Coping with a child with down syndrome: The experiences of mothers in Hong Kong. Qualitative Health Research, 12, 223–237. https://doi.org/10.1177/104973202129119856
Lashewicz, B. M., Shipton, L., & Lien, K. (2017). Meta-synthesis of fathers’ experiences raising children on the autism spectrum. Journal of Intellectual Disabilities, 23, 117–131. https://doi.org/10.1177/1744629517719347
Lecavalier, L., Leone, S., & Wiltz, J. (2006). The impact of behavior problems on caregiver stress in young people with autism spectrum disorders. Journal of Intellectual Disabilities Research, 50, 172–183. https://doi.org/10.1111/j.1365-2788.2005.00732.x
Lee, J. X., Ong, S. I., Lee, V. Y., & AR, F. N. (2017). Parenting Stress among Malaysian Parents of Children with Autism Spectrum Disorder (ASD). Medicine and Health, 12(1), 42–55. https://doi.org/10.17576/MH.2017.1201.06
Levisohn, P. M. (2007). The autism‐epilepsy connection. Epilepsia, 48, 33–35. https://doi.org/10.1111/j.1528-1167.2007.0139.x
Lim, J. M. (2015, July 28). Living with autism in Malaysia. Institute for Democracy and Economic Afairs (IDEAS). https://www.ideas.org.my/publications-item/policy-paper-no-21-living-with-autism/
Lord, C., Cook, E. H., Leventhal, B. L., & Amaral, D. G. (2000). Autism spectrum disorders. Neuron, 28, 355–363. https://doi.org/10.1016/s0896-6273(00)00115-x
Low, H. M., Lee, L. W., & Ahmad, A. C. (2019). Knowledge and attitudes of special education teachers towards the inclusion of students with Autism Spectrum Disorder. International Journal of Disability, Development and Education, 67 (4), 1–18. https://doi.org/10.1080/1034912X.2019.1626005
Macks, R. J., & Reeve, R. E. (2007). The adjustment of non-disabled siblings of children with autism. Journal of Autism and Developmental Disorders, 37, 1060–1067. https://doi.org/10.1007/s10803-007-0491-0
Maenner, M. J., Shaw, K. A., Bakian, A. V., Bilder, D. A., Durkin, M. S., Esler, A., Furnier, S. M., Hallas, L., Hall-Lande, J., Hudson, A., Hughes, M. M., Patrick, M., Pierce, K., Poyner, J. N., Salinas, A., Shenouda, J., Vehorn, A., Warren, Z., Constantino, J. N., DiRienzo, M., …Cogswell, M. E. (2021). Prevalence and characteristics of autism spectrum disorder among children aged 8 years – Autism and developmental disabilities monitoring network, 11 sites, united states, 2018. Morbidity and Mortality Weekly Report, Surveillance Summaries, 70(11), 1–16. https://doi.org/10.15585/mmwr.ss7011a1
Maynard, D. W., McDonald, T. A., Stickle, T. (2016). Parents as a team: Mother, Father, a child with autism spectrum disorder, and a spinning toy. Journal of Autism and Developmental Disorders, 46, 406–423. https://doi.org/10.1007/s10803-015-2568-5
McCary, L. M., Grefer, M., Mounts, M., Robinson, A., Tonnsen, B., & Roberts, J. (2012). The Importance of Differential Diagnosis in Neurodevelopmental Disorders: Implications for IDEIA. American Psychological Association.
McHale, J. P., & Rasmussen, J. (1998). Coparental and family group-level dynamics during infancy: Early family precursors of child and family functioning during preschool. Development and Psychopathology, 10, 39–58.
Meadan, H., Halle, J.W., & Ebata, A.T. (2010). Families with children who have autism spectrum disorders: Stress and support. Exceptional Children, 77(1), 7–36. https://doi.org/10.1177/001440291007700101
Ministry of Education Malaysia. (2021, October, 31). Book of special needs educational data. Ministry of Education Malaysia. [Kementerian Pendidikan Malaysia. (2021, October, 31). Buku Data Pendidikan Khas. Kementerian Pendidikan Malaysia.] https://www.moe.gov.my/en/muat-turun/pendidikankhas/buku-data-pendidkan-khas/4918-buku-data-pendidikan-khas-tahun-2021/file
Ministry of Health Malaysia. (2014). Clinical practice guidelines: Management of autism spectrum disorder in children and adolescents. (GU:MOH/P/PAK/279.14). Malaysia Health Technology Assessment Section. https://www.moh.gov.my/moh/attachments/CPG%202014/CPG%20Management%20of%20Autism%20Spectrum%20Disofer%20in%20Children%20and%20Adolescents.pdf
Minkowski, E., Targowla, R., & Ziadeh, S. (2001). A contribution to the study of autism: The interrogative attitude. Philosophy, Psychiatry, & Psychology, 8, 271–278. https://doi.org/10.1353ppp.2002.0020
MyGovernment. (2022, October 5). Obtaining facilities, welfare and health care. The Government of Malaysia’s Official Portal. https://www.malaysia.gov.my/portal/subcategory/335
Naber, F. B. A., Bakermans-Kranenburg, M. J., Ijzendoorn, M. H. V., Swinkels, S. H. N., Buitelaar, J. K., Dietz, C., Daalen, E. V., & Engeland, H. V. (2008). Play behavior and attachment in toddlers with autism. Journal of Autism Development Disorder, 38, 857–866. https://doi.org/10.1007/s10803-007-0454-5
Nasir, M. N. A., Efendi, A. N. A. E. (2016). Special education for children with disabilities in Malaysia: Progress and obstacles. Malaysia Journal of Society and Space, 12, 78–87.
Neik, T. T. X., Lee, L. W., Low, H. M., Chia, N. K. H., & Chua, A. C. K. (2014). Prevalence, diagnosis, treatment and research on autism spectrum disorders (ASD) in Singapore and Malaysia. International Journal of Special Education, 29(3), 82–92.
Orsmond, G. I., & Seltzer, M. M. (2009). Adolescent siblings of individuals with an autism spectrum disorder: Testing a diathesis-stress model of sibling well-being. Journal of Autism and Development Disorders, 39, 1053–1065. https://doi.org/10.1007/s10801-009-0722-7
Padgett, D. K. (1998). Qualitative method in social work research: Challenges and rewards. SAGE Publications.
Parker, S. K., Schwartz, B., Todd, J., & Pickering, L. K. (2004). Thimerosal-containing vaccines and autistic spectrum disorder: A critical review of published original data. Journal of the American Academy of Pediatrics, 114, 793–804. https://doi.org/10.1542/peds.2004-0434
Patton, M. Q. (2002). The two decades of developments in qualitative inquiry: A personal, experiential perspective. Qualitative Social Work, 1(3), 261–283. https://doi.org/ 10.1177/1473325002001003636
Pivetti, M., Melotti, G., & Mancini, C. (2020). Vaccines and autism: A preliminary qualitative study on the beliefs of concerned mothers in Italy. International Journal of Qualitative Studies on Health and Well-Being, 15, 1–15. https://doi.org/10.1080/17482631.2020.1754086
Quek, D. K. L. (2009). The Malaysian health care system: A review. Intensive workshop on health system in transition. https://www.researchgate.net/publication/237409933_The_Malaysian_Health_Care_System_A_Review
Restall, G., & Magill-Evans, J. (1998). Play and preschool children with autism. American Journal of Occupational Therapy, 48, 113–120.
Riany, Y. E., Cuskelly, M., & Meredith, P. (2016). Cultural belief about autism in Indonesia. International Journal of Disability, Development and Education, 63(6), 1–18. https://doi.org/10.1080/1034912X.2016.1142069
Rice, C. (2007). Prevalence of autism spectrum disorders-Autism and developmental disabilities monitoring network, 14 sites, United States, 2002. Morbidity and Mortality Weekly Report, Surveilance Summaries, 56(1), 12–28.
Rice, C. (2009). Prevalence of autism spectrum disorders-Autism and developmental disabilities monitoring network, United States, 2006. Morbidity and Mortality Weekly Report, Surveilance Summaries, 58(10), 1–20. https://doi.org/10.1037/e562722010-001
Robinson, N. M., & Robinson, H. B. (1976). The mentally retarded child. McGraw-Hill.
Rosen, N. E., Lord, C., & Volkmar, F. R. (2021). The diagnosis of autism: From Kanner to DSM-III to DSM-5 and beyond. Journal of Autism and Developmental Disorders, 51, 4253–4270. https://doi.org/10.1007/s10803-021-04904-1
Russa, M.B., Matthews, A. L., & Owen-Deschryver, J. S. (2015). Expanding supports to improve the lives of families of children with autism spectrum disorder. Journal of Positive Behavior Interventions, 17(2), 95–104. https://doi.org/10.1177/1098300714532134
Rutter, M. (1978). Diagnosis and definition of childhood autism. Journal of autism and childhood schizophrenia, 8, 139–161. https://doi.org/10.1007/BF01537863
Sandin, S., Schendel, D., Magnusson, P., Hultman, C., Suren, P., Susser, E., Gronborg, T., Gisser, M., Gunnes, N., Gross, R., Henning, M., Bresnahan, M., Sourander, A., Hornig, M., Carter, K., Francis, R., Parner, E. Leonard, H., Rosanoff, M., … Reichenberg, A. (2016). Autism risk associate with parental age and with increasing difference in age between the parents. Molecular Psychiatry, 21, 693–700. https://doi.org/10.1038/mp.2015.70
Schieve, L. A., Blumberg, S. J., Rice, C., Visser, S. N., & Boyle, C. (2007). The relationship between autism and parenting stress. Pediatrics, 119 (Suppl.1), 114–121. https://doi.org/10.1542/peds.2006-2089Q
Schlebush, L., & Dada, S. (2018). Positvie and negative cognitive appraisal of the impact of children with autism spectrum disorder on the family. Research in Autism Spectrum Disorder, 51, 86–93. https://doi.org/10/1016/j.rasd.2018.04.005
Seligman, M. (1979). Strategies for helping parents of exceptional children: A guide for teacher. The Free Press.
Shave, K., & Lashewicz, B. (2016). Support needs of fathers of children with ASD: Individual, family, community and ideological influences. Journal of Applied Research in Intellectual Disabilities, 29, 495–507. https://doi.org/0.1111/jar.12204
Sim, A., Vaz, S., Cordier, R., Joosten, A., Parson, D., Smith, C., & Falkmer, T. (2018). Factors associated with stress in families of children with autism spectrum disorder. Developmental Neurorehabilitation, 21, 155–165. https://doi.org/10.1080/17518423.2017.1326185
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, 345–352. https://doi.org/10.1016/j.procs.2017.01.232
Stella, C. (1971). Autism in children with congenital rubella. Journal of Autism and Childhood Schizophrenia, 1, 33–47.
Tekinarslan, I. C. (2018). Autism Spectrum Disorder: Experiences of mother s before and after their children’s diagnosis and implications for early special education services. Journal of Education and Training Studies, 6, 68–81. https://doi.org/10.11114/jets/v6i12.3692
Travis, L. L., & Sigman, M. (1998). Social deficits and interpersonal relationships in autism. Mental Retardation and Development Disabilities Research Review, 4, 65–72. https://doi.org/10.1002/(SICI)1098-2779(1998)4:2<65::AID-MRDD2>3.0.CO;2-W
Volkmar, F. R., Bregman, J., Cohen, D. J., & Cicchetti, D. V. (1988). DSM-III and DSM-III-R diagnoses of autism. The American Journal of Psyhchiatry, 145, 1404–1408. https://doi.org/10.1176/ajp.145.11.1404
Volkmar, F. R., Cohen, D. J. & Paul, R. (1986). An evaluation of DSM-III criteria for infantile autism. Journal of the American Academy of Child Psychiatry, 25(2), 190–197.
Ward, B., Tanner, B. S., Barbara, M., Dyches, T. T., Freeborn, D. (2016). Sibling experiences: Living with young persons with autism spectrum disorder. Pediatric Nursing, 42, 69–76.
Weitlauf, A. S., Vehorn, A. C., Taylor, J. L. & Warren, Z. E. (2014). Relationship satisfaction, parenting stress, and depression in mothers of children with autism. Autism, 18(2), 194–198. https://doi.org/10.1177/1362361312458039
Westerman, M. A., & Massoff, M. (2001). Tradic coordination: An observational method for examining whether children are “caught in the middle” of interparental discord. Family Process, 40, 479–493.
Williams, E., Reddy, V., & Costall, A. (2001). Taking a closer look at functional play in children with autism. Journal of Autism and Developmental Disorders, 31(1), 67–77. https://doi.org/10.1023/a:1005665714197
Wing, L., & Gould, J. (1979). Severe impairments of social interaction and associated abnormalities in children: Epidemiology and classification. Journal of Autism and Developmental Disorder, 9, 11–29. http://doi.org/10.1007/BF01531288
Wolff, S. (2004). The history of autism. European Child & Adolescent Psychiatry, 13(4), 201–208. https://doi.org/10.1007/s00787-004-0363-5.
Wu, S., Wu, F., Ding, Y., Hou, J., Bi, J., & Zhang, Z. (2017). Advanced parental age and autism risk in children: A systematic review and meta-analysis. Acta Psychiatrica Scandinavica, 135, 29–41. https://doi.org/10.1111/acps.12666
Xiang, N. T. T., Lee, L. W., Low, H. M., Chia, N. K. H., & Chua, A. C. K. (2014). Prevalence, diagnosis, treatment and research on autism spectrum disorders (ASD) in Singapore and Malaysia. International Journal of Special Education, 29, 82–92.
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), Article 8532. https://doi.org/10.3390/ijerph18168532
Yu, B. (2013). Issues in bilingualism and heritage language maintenance: Perspectives of minority-language mothers of children with autism spectrum disorders. American Journal of Speech-Language Pathology, 22(1), 10–24. https://doi.org/10.1044/1058-0360(21012/10-0078)
Yu, B. (2016). Bilingualism as conceptualized and bilingualism as lived: A critical examination of the monolingual socialization of a child with Autism in a bilingual family. Journal of Autism and Development Disorders, 46, 424–435. https://doi.org/10.1007/s10803-015-2625-0
Zeldovich, L. (2018, May 19). The evolution of ‘autism’ as a diagnosis, explained. Spectrum. https://www.spectrumnews.org/news/evolution-autism-diagnosis-explained/