回頭看，與你相遇的青春-青少年時期與自閉症手足的互動經驗

Look back at the years in our adolescence- the relationships between young adults and their autistic siblings

林培涵(Pei-Han Lin)

指導教授 ： 陳毓文

國立臺灣大學/社會科學院/社會工作學研究所/碩士(2014年)

https://doi.org/10.6342/NTU.2014.02420

摘要

綜觀自閉症相關研究，長期以來著重於主要照顧者及障礙者身上，使得自閉症者的一般手足在政策及實務工作上相對被忽略。為了深入瞭解一般手足的感受及其對手足經驗的詮釋，本研究以質性訪談的方式，從7位成人一般手足的角度出發，回顧其青少年時期與自閉症者的互動故事及資源運用情形，更進一步探討過去經驗對此刻生活的意義以及對自閉症手足的未來規劃。本研究的結論如下：
1.自閉症者的手足互動存在特殊與複雜性：單向式且不對等的情感交換、低評價的手足身份與自我概念、對非重度自閉症手足的定位與描述感到矛盾以及對自閉症手足高度認同與捍衛。
2.自閉症家庭樣貌與關係：照顧責任傾斜且一般手足扮演親職化角色、一般手足成長過程缺乏深層陪伴與傾聽。
3.自閉症家庭與社會互動情形：男性照顧者相對狹隘的社會資源使用、正式資源著重於主要照顧者及障礙者、揭露身為自閉症手足身份的兩難。
4.過去經驗對目前生活的意義：成就成熟、同理、細膩、敏銳的「軟實力」；比一般人有機會接觸障礙族群並體認差異性；成就彈性及以對話為基礎的人際與伴侶關係。
5.對自閉症手足的未來規劃：心理調適方面女性相對感性且擔憂，男性則表現樂觀且願意承擔照顧責任；對重度自閉症手足規劃為機構式照顧服務，輕及中度自閉症手足則期待訓練自立生活能力。
最後提出討論與建議，首先要重視與看見自閉症手足之間的愛與情感羈絆，因為這正是自閉症家庭最寶貴的優勢與資源；其次是呼籲在家庭、政策及實務工作上重視一般手足的存在與需求；第三則積極地改變「障礙者是個人悲劇」的錯誤想法以增進對障礙者的接納；最後則是落實國家對身心障礙照顧的責任，打破由家庭承擔單一照顧責任的枷鎖。

關鍵字

自閉症 ； 青少年 ； 手足 ； 手足互動 ； 回顧

並列摘要

The aim of this study was to better understand the feelings and experiences of people having siblings with autism. It especially focused on their interaction and service use experiences during adolescence. This study further explored how these experiences have influence on the meaning of life for the moment and for the future planning of the autistic sibling. Face to face interviews were conducted with 7 adult siblings. Findings of this study indicated that the sibling experiences were quite complicated and unique. However, one-way interaction patterns were typical, that is, the emotional exchange and feedback between them was unequal. The social and cultural aspects toward autism had great impact on the siblings’ self-esteem, especially during adolescence. It is worth mentioning that most siblings were hesitant to let their peers know that they had an autistic sibling. Although they did not know how to correctly describe the sibling with autism, the majority accepted autism, and actively defended the rights for their siblings. In terms of family relationships, it’s not surprising that mother carried most caring responsibilities, so did the siblings assume the role of parenting. Because parents spend most of their time in taking care of the autistic children, the “normal” siblings were less accompanied and listened during adolescence. In terms of service use, male primary caregiver used the least resources. Most of the resources were supplied for the primary caregiver and the autistic sibling. As a result, not much attention was paid to the needs of the “normal” siblings. The experiences of growing up with the autistic sibling made most participants more mature in character, be more emphatic, delicate, and sensitive; and had more opportunities to accept differences and disabilities.
As for the planning of the future for the autistic sibling, it was found that female participants were relatively more sensitive and concerned. On the contrary, male respondents were more optimistic and be willing to take care of the autistic sibling in the future. Different options for the autistic sibling indeed existed, including institutional care for siblings with severe autism, and independent training for relatively non-severe autism.
According to the research results, following suggestions were proposed. First, this study presented love and care existed among these siblings. Second, we should be supportive to those who have an autistic sibling, and to recognize their needs, and furthermore, to provide services, such as supportive groups to these “normal” siblings. Third, the government should pay more attention to all family members with autistic children, don’t let families carry the full responsibility of caring the autistic member alone.

並列關鍵字

autism ； adolescent ； siblings ； siblings’ interaction ； life review

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