陪你看見花開：一位母親培養資優自閉症子女自我決策之敘事探究

Going with you to watch the flowers bloom: A narrative study of a mother cultivating the self-determination of her gifted child with Autism Spectrum Disorder

10.6172/BSE.202211_47(3).0002

吳怡慧(I-Hwey Wu)

母親 ； 自我決策 ； 資優自閉症 ； 雙重特殊需求 ； gifted child with Autism Spectrum Disorder (ASD) ； mother ； self-determination ； twice-exceptional children

特殊教育研究學刊

47卷3期（2022 / 11 / 30）

35 - 65

英文

自我決策是轉銜的重要關鍵，然而當前探討家庭培養特殊子女自我決策的研究仍顯不足，相關跨階段歷時性研究也缺乏。本研究採敘事探究分析一位母親培養高中以下資優自閉症子女自我決策的歷程，及其個人背景與家庭脈絡的影響。研究者對母親進行多次深度訪談，並以整體－形式分析及類別－內容分析加以析論。研究結果顯示：（一）母親的培養歷經懵懂扎根、挫敗摸索、幽悶耕耘和從容初收等階段的起伏。（二）影響母親培養歷程的個人背景包括：1.健康生涯觀為基底；2.及時積極因應而產生轉折。（三）影響母親培養歷程的家庭脈絡包括：1.原生家庭正向價值觀的代間傳遞；2.家族與學校的社會支持；3.配偶的共親職。（四）資優自閉症子女自我決策的培養是兼顧生活與雙重特殊需求的三軸線動態歷程，但易忽略障礙的早期介入。（五）自我決策的培養需要反覆修正和多元鷹架支持。本研究建議家長及早介入並尋求社會支持，提供多元適齡適性的鷹架，建立健康的生涯觀與界線，並找出家庭系統的優勢與正向影響。最後，據以提出對家長、專業人員及未來研究的建議。

Rationale & Purpose: Career planning and development are major concerns of families with differently-abled children. These families want their children to be financially independent and productive members of the workforce. Self-determination is the ultimate goal and the core of high-quality transition education. Therefore, improving students' self-determination ability is crucial in transition education. The cultivation of autonomy of gifted students with disabilities or "twice-exceptional" students and helping them appreciate the consequences of their actions is one of the primary goals of counseling. Self-determination develops with time throughout the person's entire life. Although adolescence is the most critical period for developing self-determination, fundamental skills start to develop in childhood. Family members continue to play a key albeit different role as the child matures. Individuals, schools, and families are key actors influencing the development of self-determination in differently abled individuals. Although studies have investigated the effectiveness of interventions aimed at fostering self-determination, few studies have investigated family participation in fostering self-determination in gifted ASD children. The pressure of parenting caused by such child's dual characteristics, limited parenting strategies, and family interactions often make parenting inefficient. Studies on parenting of gifted ASD children have also discussed the positive impact on the growth and adaptation of them. The literature has indicated that self-determination starts early and develops in adolescence and that families are responsible for the child's transition into the workforce. Therefore, this study explored a mother's cultivation of self-determination for her gifted son with ASD. The research questions are as follows: (a) What is the process of the mother cultivating the self-determination of her gifted son with ASD below high school? (b) How did the mother's personal and family background influence the cultivation of her son's self-determination? Method: The author met Sister Lan (mother's pseudonym) when volunteering in special parenting services in the community. This study used a narrative inquiry approach to explore her approach to cultivating self-determination of her gifted son with ASD, Xiao Ming (pseudonym). Sister Lan is a senior volunteering instructor in an ASD institution and has served as a board member of the ASD parent organization for a long time. Xiao Ming, who was 26 years old, graduated from university. His verbal IQ score was 135 in college. At the age of 3 years, Xiao Ming came to exhibit an extreme sensitivity to touch and hearing; he also had an exceptional attention to detail and a deep interest in literature, history, and astronomy. From preschool to 3rd grade, Xiao Ming attended sensory integration courses but made little progress. He received no early childhood intervention. Since 3rd grade, Xiao Ming's ASD-related difficulties became more apparent. He was good at Chinese but not English, math, and handwriting. He was diagnosed with ASD when he was in 6th grade. The author collected data by conducting 19 in-depth interviews; the study was primarily based on data from the first 9 interviews in which Xiao Ming's life before high school was talked about. Data were analyzed using a holistic-form analysis and a category-based content analysis to answer the first and second research questions, respectively. This study adopted an approach of autobiographical narrative inquiry to analyze Sister Lan's retrospective and focused on the sequence of her selection and connection of events as well as the intersubjectivity between the author and her. Results: First, Sister Lan's cultivation of Xiao Ming's self-determination has gone through ups and downs in the chronological following stages. (a) Preschool-Stage of ignorant beginnings. She was mainly focused on teaching Xiao Ming to do household chores to improve his self-management and on planning activities for Xiao Ming to explore his interests. (b) Elementary school-Stage of frustrating attempts. She was mainly focused on providing a role model for Xiao Ming to scaffold ideas and pick up skills; training problem-solving through parent-child interactions; and finding opportunities to help Xiao Ming's engage in self-exploration. (c) Middle school-Stage of stoic hard work. She was mainly focused on cultivating Xiao Ming's self-awareness and fostering his decision-making skills and intellectual flexibility. (d) High school-Stage of effortlessly reaping the fruit of one's labor. Sister Lan created advanced skill application opportunities; calmly supported Xiao Ming's crisis management; reviewed the results together; and examined the admission system and evaluated Xiao Ming's suitability. Her personal background affected the process in which she cultivated the self-determination of Xiao Ming in the following manner. (a) Healthy career perspectives: She was courageous in making the right career decisions; surpassing gender stereotypes about career; and having healthy parent-child attachment. (b) Active and timely coping: She encouraged herself and sought social support; took time to develop accountability and set boundaries with Xiao Ming; provided psychological empowerment; and gained inspiration from unfulfilled goals. Third, the role of the family that affected Sister Lan's cultivating process includes: (a) Intergenerational transmission of positive values of her family, including influences from her father, mother, and grandmother, as well as the family history of her ancestors. (b) Social support from family members' daily assistance and their acceptance of disability. (c) Xiao Ming's father provided co-parenting, division of household chores, and emotional comfort for Sister Lan, and shared interests with Xiao Ming. Fourth, the cultivation of self-determination of gifted children with ASD was a three-axis dynamic process that encompasses daily living and the child's twice-exceptional needs. However, the early intervention of ASD was easy to overlook. Fifth, the cultivation process required repeated modifications and a wide variety of scaffolding methods. Conclusions/Implications: This study suggests that parents of gifted ASD children should start cultivating the child's self-determination early; seek social support; provide age-appropriate diverse scaffolding strategies; establish healthy perspectives on the parent's and child's careers; and identify the strengths and the positive influence of the family. Professionals are advised to provide support for parents of twice-exceptional students below high school and more intensive support for parents of those in high school. Parent training should include practical cross-age strategies for fostering self-determination. This study also suggests that early intervention teams, educators, and social workers can provide self-determination workshops for practitioners and parents. Moreover, programs may be designed to offer educational or emotional support for parents of gifted ASD children to promote family involvement in cultivating children's self-determination. Furthermore, functional interactive training and various enrichment courses may be designed for gifted ASD children. Finally, additional studies are needed to explore parents' cultivation process after their gifted ASD children enter college. The experiences of other family members in raising their twice-exceptional children and the influence of the school or other individuals may be explored. Different types of families (e.g., single parent families) may also be considered.

1. 朱思穎, S.-Y.,吳香儀, H.-Y.(2011)。成功轉銜之推手：培訓特殊需求幼兒自我決策能力之理論及實務探討。國小特殊教育，52，25-37。
   連結：
2. 吳怡慧, I.-H.,,趙家琛, C.-C.,陳嫺霓, H.-N.(2019)。自閉症家庭親職效能、類自閉特質、與社會資本之初探。特殊教育發展期刊，68，57-72。
   連結：
3. 吳怡慧, I.-H.,趙家琛, C.-C.,陳嫺霓, H.-N.(2018)。一位資優自閉症國中生家長替代親職壓力與親職效能之個案研究。特殊教育發展期刊，65，39-52。
   連結：
4. 吳維民, W.-M.(2021)。特殊教育領域運用自我決策之探討。特殊教育發展期刊，72，67-86。
   連結：
5. 陳勇祥, Y.-H.(2018)。輕度自閉症資優生失敗經驗的情感調節及復原歷程之研究。特殊教育研究學刊，43(3)，29-55。
   連結：
6. 陳偉仁, W.-R.(2018)。從自我決策理論探析資優兒童的自主學習。資優教育季刊，146，1-12。
   連結：
7. 楊詠雯, Y.-W.,林宏熾, H.-C.,林示安, S.-A.,周穎馨, Y.-H.,柯馨絜, H.-C.(2005)。自閉症青年自我決策狀況之分析－以臺灣中部地區為例。身心障礙研究季刊，3，102-112。
   連結：
8. 鄒小蘭, H.-L.(2012)。校外資源開發與運用 ─ 以身心障礙資優學生為例。資優教育季刊，125，9-17。
   連結：
9. 鄒小蘭, H.-L.,盧台華, T.-H.(2015)。身心障礙資優學生支援服務系統建構之行動研究。特殊教育研究學刊，40(2)，1-29。
   連結：
10. 賴念華, N.-H.,李御儂, Y.-N.,羅子琦, T.-C.,蕭雅雯, Y.-W.(2020)。臺灣身心障礙者母親在不同時間點之困境與服務需求初探。特殊教育研究學刊，45(1)，1-32。
    連結：
11. 羅祥妤, H.-Y.,張正芬, C.-F.(2014)。動身、啟程，國小與國中交錯的生活－一位參與加速制亞斯伯格資優生的學校適應。資優教育季刊，130，17-24。
    連結：
12. American Psychiatric Association=APA(2013).Diagnostic and statistical manual of mental disorders.
13. Ayers, S. L.,Wagaman, A.,Geiger, J. M.,Bermudez-Parsai, M.,Hedberg, E. C.(2012).Examining school-based bullying interventions using multilevel discrete time hazard modeling.Prevention Science,13,539-550.
14. Baron, J.(Ed.),Brown, R. V.(Ed.)(1991).Teaching decision making to adolescents.Erlbaum.
15. Benzies, K.,Mychasiuk, R.(2009).Fostering family resiliency: A review of the key protective factors.Child and Family Social Work,14(1),103-114.
16. Brolin, D. E.(1993).Life centered career education: A competency-based approach.The Council for Exceptional Children.
17. Brotherson, M., J.,Cook, C. C.,Erwin, E. J.,Weigel, C. J.(2008).Understanding self-determination and families of young children with disabilities in home environments.Journal of Early Intervention,31(1),22-43.
18. Carter, E. W.,Lane, K. L.,Cooney, M.,Weir, K.,Moss, C. K.,Machalicek, W.(2013).Self-determination among transition-age youth with autism or intellectual disability: Parent perspectives.Research and Practice for Persons with Severe Disabilities,38(3),129-138.
19. Damon, W.(1983).Social and personality development: Infancy through adolescence.W. W. Norton & Company.
20. Field, S.,Hoffman, A.(2002).Preparing youth to exercise self-determination: Quality indicators of school environments that promote the acquisition of knowledge, skills, and beliefs related to self-determination.Journal of Disability Policy Studies,13(2),114-119.
21. Foley-Nicpon, M.,Assouline, S. G.(2015).Counseling considerations for the twice exceptional client.Journal of Counseling and Development,93(2),202-211.
22. Foley-Nicpon, M.,Assouline, S. G.,Stinson, R. D.(2012).Cognitive and academic distinctions between gifted students with autism and Asperger syndrome.Gifted Child Quarterly,56(2),77-89.
23. Greene, G.,Kochhar-Bryant, C. A.(2003).Pathways to successful transition for youth with disabilities.Pearson/Merrill.
24. Kohler, P. D.(1996).,Illinois University, Champaign. Transition Research Institution.
25. Leach、 D.,吳佩芳（譯）, P.-F.(Trans.),田凱倩（譯）, K.-C.(Trans.),阮震亞（譯）, C.-Y.(Trans.),張家瑞（譯）, C.-R.(Trans.),鄭竹秀（譯）, C.-H.(Trans.)(2019).應用行為分析在家庭、學校與遊戲中的運用：協助自閉症光譜障礙或其他障礙類別兒童.心理=Psychological Publishing.
26. Leiblich、 A.,Tuval-Mashiach, R.,Zilber, T.,吳芝儀（譯）, C.-Y.(Trans.)(2008).敘事研究—閱讀、分析與詮釋.濤石=Waterstone.
27. Mendaglio、 S.(Ed.),Peterson, J. S.(Ed.),鄒小蘭（譯）, H.-L.(Trans.),高振耀（譯）, C.-Y.(Trans.),蔣明珊（譯）, M.-S.(Trans.),蔡桂芳（譯）, K.-F.(Trans.),于曉平（譯）, H.-P.(Trans.),吳淑敏（譯）, S.-M.(Trans.),張靖卿（譯）, C.-C.(Trans.),黃澤洋（譯）, T.-Y.(Trans.)(2012).資優生心理輔導與諮商.華騰=Farterng Culture.
28. Palmer, S. B.,Wehmeyer, M. L.(2002).A parent’s guide to the Self-Determined Learning Model for early elementary students.Beach Center on Disability, University of Kansas.
29. Ruef, M. B.,Turnbull, A. P.(2002).The perspectives of individuals with cognitive disabilities and/or autism on their lives and their problem behavior.Research and Practice for Persons with Severe Disabilities,27(2),125-140.
30. Shogren, K. A.(2013).A social-ecological analysis of the self-determination literature.Intellectual and Development Disabilities,51(6),496-511.
31. Shogren, K. A.,Wehmeyer, M. L.,Martinis, J.,Blanck, P.(2019).Supported decision making.Camgridge.
32. Trail、 B. A.,鄒小蘭（譯）, H.-L.(Trans.)(2013).特殊族群資優教育.華騰=Farterng.
33. Turnbull、 A.(Ed.),Turnbull, R.(Ed.),Erwin, E. J.(Ed.),Soodak, L. C.(Ed.),Shogren, K. A.(Ed.),王慧婷（譯）, H.-T.(Trans.),陳淑瑜（譯）, S.-Y.(Trans.),邱春瑜（譯）, C.-Y.(Trans.),葛竹婷（譯）, C.-T.(Trans.),任麗華（譯）, L.-H.(Trans.),鄭雅莉（譯）, Y.-L.(Trans.),柯秋雪（譯）, C.-S.(Trans.)(2013).親師合作與家庭支援.華騰=Farterng Culture.
34. Wandry, D., Wehmeyer, M. L., & Glor-Scheib, S. (2013). Life Centered Education: The teacher’s guide. https://lce.cec.sped.org/public/main/overview/
35. Ward, M. J.(1988).The many facets of self-determination.NICHCY Transition Summary: National Information Center for Children and Youth with Disabilities,5,2-3.
36. Wehman, P.(1993).Transition from school to adulthood for young people with disabilities: Critical issues and policies.Recent advances in special education and rehabilitation
37. Wehmeyer, M. L.,Agran, M.,Hughes, C.(1998).Teaching self-determination to students with disabilities: Basic skills for successful transition.Brookes Publishing.
38. Wehmeyer, M. L.,Lawrence, M.(1995).Whose future is it anyway? Promoting student involvement in transition planning.Career Development for Exceptional Individuals,18(2),69-83.
39. Wehmeyer、 M. L.,趙本強, P.-C.(2020)。學校與家庭如何促進身心障礙學生的自我決策。身心障礙學生的轉銜教育與服務
40. Wolman, J. M.,Campeau, P. L.,DuBois, P. A.,Mithaug, D. E.,Stolarski, V. S.(1994).AIR Self-Determination Scale and user guide.American Institutes for Research.
41. Wu, I. H.,Chao, C. C.,Hsu, P. F.(2014).How does a mother’s parental resilience affect her twice exceptional child? A Case of giftedness and high-functioning Autism Spectrum Disorder in Taiwan.Conference Proceeding of the 5th Pacific-Rim Conference of Education 2014,Taipei, Taiwan, ROC:
42. 朱思穎, S.-Y.(2015)。家長對特殊需求幼兒自我決策之看法：從作息本位談起。幼兒保育學刊，12，1-16。
43. 林幸台, H.-T.(2019).身心障礙者生涯輔導與轉銜服務.心理=Psychological Publishing.
44. 林素貞, S.-J.,Alverson, C. Y.,劉馨君, H.-J.(2020)。轉銜教育與服務概論。身心障礙學生的轉銜教育與服務
45. 林儒瑤, R.-Y.(2018).陪你一起長大.凱信企管=Kai Hsin Management.
46. 徐培芬, P.-F.(2011)。臺北市立大學=University of Taipei。
47. 教育部（2019）：十二年國民基本教育身心障礙相關之特殊需求領域課程綱要。[Ministry of Education (2019). Twelve-Year Basic Education Curriculum Guidelines for Special Needs Areas Related to Disabilities.] https://special.moe.gov.tw/articleInfo.php?guid=C18F9574-ACD6-1467-F556-1BE38C55F4F3&paid=141&token=293ac1d4d192f46a4e2d34f6932a22b1
48. 陳向明, X.-M.(2002).教師如何作質的研究.洪葉=Hung Yeh.
49. 鈕文英, W.-I.(2010)。自我決策在個別化教育計畫中之實踐。99 年度中華民國特殊教育學會年刊，95-120。
50. 鈕文英, W.-I.(2017).質性研究方法與論文寫作.雙葉書廊=Yeh Yeh Book Gallery.
51. 楊政學, C.-H.(2016).研究方法.普林斯頓=Prinston.
52. 廖彩妙, T.-M.(2013)。國立臺東大學=National Taitung University。
53. 趙家琛, C.-C.,吳怡慧, I.-H.,曹光文, C.-C.,陳明終, M.-C.(2017).自閉症類群障礙檢核表華文版指導手冊.心理=Psychological Publishing.
54. 蔡桂芳, K.-F.,侯雅齡, Y.-L.(2006)。協助資優障礙者發揮特殊才能。屏師特殊教育，13，38-46。
55. 謝秀芬, H.-F.(2013).家庭社會工作理論與實務.雙葉書廊=Yeh Yeh Book Gallery.

1. (2024)。從失業到就業—中度成人自閉症就業經驗之個案研究。特教論壇，36，57-78。