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題名:輕度成人自閉症者成長歷程中的家庭韌力探究
作者:顏瑞隆
作者(外文):Yen, Jui-Lung
校院名稱:國立臺灣師範大學
系所名稱:特殊教育學系
指導教授:張正芬
學位類別:博士
出版日期:2016
主題關鍵詞:成人自閉症家庭韌力adult with autismfamily resilience
原始連結:連回原系統網址new window
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  • 點閱點閱:32
我探究兩個家庭教養輕度成人自閉症者的生命故事,以及在教養成人自閉症者過程中,家庭韌力建構的歷程。我運用敘事研究的方法,深度訪談兩個家庭的所有成員。研究過程中,兩個家庭成員袒露他們在教養與陪伴輕度成人自閉症者的生命故事,其中經歷了家庭巨變,家庭組織崩解的過程,親子關係、父母親和手足之間的關係也因為自閉症者的情緒行為問題、學校適應問題等狀況,而受到嚴厲挑戰。
從研究過程中我發現自閉症者家庭困境包括成人自閉症者長期受到自閉症的影響深遠,因自閉症特質所引起的學校學習適應困難、人際適應困難、情緒行為問題等都帶給家庭,尤其是主要照顧者的教養壓力,形成家庭的危機與困境。在自閉症者兒童期時,因為輕度自閉症者的早期診斷困難,以及相關的特教資訊難以取得,加上輕度自閉症者所展現的學習挫折、人際適應困難和情緒行為問題,讓父母親對自閉症者的接納度不一,其中一個家庭的父親在孩子早期成長時便長期缺席,後來也因故自殺;另一個家庭父親受到傳統家庭觀念與社會文化價值的影響,採取嚴格管教的方式,兩位母親則是採取較為開明、有彈性的教養方式,然而這樣的教養差異性也造成父母親溝通上的難度,引起父母親關係上的緊張。兩個輕度自閉症者都曾經有強烈的情緒行為問題出現,造成家庭生活的衝擊,甚至影響母親的生涯規劃。自閉症者家庭的手足關係並不親密,妹妹並不知道該如何與自閉症者互動相處,同時造成妹妹的社會化困難和親職化的問題。
我發現自閉症者有五項家庭韌力,分別是覺察、連結、正向信念、靈性和超越性。這五項家庭韌力是由家庭成員與環境互動的結果,這些家庭韌力並非獨立存在,也沒有優先順序,比較像是履帶式的互相牽引。家庭裡的任何一項韌力特質都有機會牽動其他特質的產生,進而帶動整體的家庭韌力,並且展現韌力的結果。不過家庭會隨著家庭生命歷程的演進,而不斷有新的挑戰或是困境產生,因此家庭困境與韌力將會不斷循環而生。
最後,我提供家庭以及教育工作者相關建議,並提出建議供未來研究參考。
關鍵字:成人自閉症、家庭韌力
This narrative inquiry aimed to explore experiences of families living with adults with mild autism and to identify their coping strategies and how they build resilience. During the in-depth interviews process, self-disclosure of members of two families unravels their experience of raising and accompanying with family members with autism. The challenges the families have faced and thrived, such as the process of disintegration of family , parent-child relationship, parents and the sibling relationship resulted from the emotional and behavioral problems of family member with autism, and school demands adjustment were all revealed.
The study addressed five elements contributed to the two resilient families, including awareness, connection, positive belief, communication and spirituality and transcendence. The five elements are the results of the mutual interaction between and within family members and the environment. The interconnection process between the family and the environment is inseparable and there is no order of priority. Thus, we are able to portray a picture of family resilience which is formulated by a dynamic interplay of connectedness of the five elements. As the family cycle evolves, families facing continuous diversities will build ever-changing and moving resilience.
key word: adult with autism, family resilience
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