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

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。

關鍵字

母親；自我決策；資優自閉症；雙重特殊需求

並列摘要

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.

並列關鍵字

gifted child with Autism Spectrum Disorder (ASD) ； mother ； self-determination ； twice-exceptional children

參考文獻

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