從失翼、展翅到飛翔：一位自閉兒母親的轉化歷程

From Shrunk Wings to Expanding Wings to Soaring Wings: the Transformational Process of an Autistic Child's Mother

10.29494/LN.201609_17(3).0003

謝美慧(Mei-Hui Hsieh)；徐瑀謙(Yu-Chien Hsu)

自閉症類群障礙症(Autism Spectrum Disorder) ； 自閉症(autism) ； 轉化(spiritual transformation) ； 敘事分析(narrative analysis) ； Autism Spectrum Disorder ； autism ； spiritual transformation ； a narrative analysis

領導護理

17卷3期（2016 / 09 / 01）

20 - 29

繁體中文

自閉症類群障礙症(Autism Spectrum Disorder，簡稱ASD)是大腦神經缺損導致的發展障礙，典型症狀常在三歲前顯現，被視為兒童發展遲緩疾患中複雜度最高的疾患。在華人文化中，婦女一直被視為是照顧者的角色，對多數育有自閉兒童的家庭而言，所有重心在孩童身上，但重擔卻在母親肩上。照顧的歷程所伴隨的是一連串身體、心理、社會和精神等層的挑戰及任務。多數研究提及，自閉兒童的母親在過程承受不同層面的照顧負荷，甚至導致負向消極的影響，但也有研究發現，母親在照顧歷程中透過內在轉化力量呈現正向反應。本文以深入訪談一位自閉兒母親，並以敘事分析(narrative analysis)，瞭解母親在陪伴或照顧歷程中的轉化歷程。經本文分析，整理出5個主題3個歷程，5個主題分別為：(1)找解釋、找出口、轉境，(2)受苦，(3)支持的尋求及獲得，(4)意義的尋求及獲得，以及(5)生命的體會；而3個轉化歷程則從失翼、展翅到飛翔。此個案研究的結果，提供我們對於身處困境的自閉母親的深層理解，轉化是修復失翼最好的處方，個案在照顧自閉兒歷程中從失翼之痛到最後獲得生命的心體會，轉化的力量更讓個案展翅高飛。透過此個案轉化歷程的分享，期望為其它自閉兒母親帶來灌注前行的力量。

Autism Spectrum Disorder (ASD) is a central nervous defect causing developmental delay. ASD usually demonstrates typical symptoms before the child reaches three years old and can cause developmental retardation in children. Although all care focus is on the child in a family with an autistic child, the care burden falls on the mother's shoulders. The caring journey accompanies a series of challenges and tasks in physical, psychological, and social aspects. Most research studies mention that the mother of an autistic child undertakes different levels of care load, even negative impacts. However, a few research studies also found that the autistic child's mother may present a positive response through internal transformational strength. This case study interviewed a mother of an autistic child in-depth. The narrative analysis was applied to understand her experience of internal transformation during the period of care and companion. Based on the analysis, the author complied three progresses and five themes. Three progresses during the process of internal transformation are from ＂the wings are shrunk＂ to ＂the wings are expanding to ＂the wings are soaring＂. The five themes are (1) seeking rationalization and outlets, (2) suffering from reality, (3) searching for support, (4) probing the meaning, and (5) appreciating life. This case study helps us understand in depth about a self-closed mother's suffering from such a difficult situation. Transformation is the best way to repair shrunken wings. In this case study, the mother learned how to relieve her pain from shrunken wings, expand her wings, and finally experience soaring through the strength of transformation. The author expects that sharing this case study can enhance ongoing strength for those mothers who have autistic children.

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