華人家庭主義下之成年女性與自閉症者的姊弟關係經驗

The Relational Experience of Being an Adult Elder Sister of an Autistic Brother under Chinese Familism

研究目的：本研究試圖瞭解華人家庭主義影響下之成年女性與自閉症者的姊弟關係經驗。研究方法：本研究採用質性訪談方式，邀請三位成年女性描述自己與自閉症弟弟的生活互動與關係經驗，並以現象學方法進行還原分析，從而獲得自閉者姊弟手足關係與照顧經驗的普遍結構描述。研究結果：自閉症者姊弟手足關係與照顧經驗的普遍結構共有四項主題，分別為自然狀態下的手足互動，被指定的幫手，面對自閉症，以及從指定照顧者到專業照顧者的路徑。研究結論：本研究呈現出自然照顧、替代照顧與專業照顧三種手足照顧現象，以及於此照顧結構中手足的相應位置與四條移動路徑，並提出自閉症者的手足關係無法獨立於家庭關係來單獨對待，最後本研究也對華人家庭中的手足關係提出倡議。

Purpose: Existing research on sibling relationships involving individuals with autism often focuses on individual perspectives, viewing siblings as stimuli to explore the interactions among various stimulus variables. Autism is frequently conceived as a risk factor in the relationships of these siblings. However, there was a lack of consistency and a sense of ambiguity in the results. Besides, in the context of Taiwanese families, interpersonal interactions follow specific social norms, such as Chinese familism, which defines a system of family interaction for maintaining harmony. It is challenging to exclude parental influence when discussing sibling relationships in families with autism. Factors such as sibling gender and birth order also deserve consideration. This study aims to explore the relational experience of being an adult elder sister to an autistic brother within the context of Chinese familism in Taiwan. Methods: 3 females aged 25-35 participated in the study, and they were the elder sisters of autistic brothers. Each interview lasted between 90 and 120 minutes, during which discussed their sibling relationship and interactions with their autistic brother. Afterward, a phenomenological analysis of the transcripts was conducted. Results: The general structure revealed from the analysis is composed of 4 themes. (1) sibling interaction in a natural state, which indicates siblings of autism initially interact similarly to typical siblings and continue to engage naturally by providing necessary guidance and support when they recognize the unique behaviors of autistic brothers. (2) sibling as an assigned helper, which shows that the sibling carrying out various care activities for the autistic brother on behalf of the parents and beyond a mere sibling relationship, shaping the care triangle within the family dynamic. Despite this being a manifestation of filial piety, feelings of reluctance or unfairness may compromise the natural sibling relationship. (3) facing the diagnosis of autism, which highlights the phenomena that siblings perceive unique behaviors through personal experiences, while professional diagnosis offers a different perspective that does not aid in understanding their daily interactions. however, diagnosis allows for access to professional care and resources, incorporates professional elements into the sibling relationship, and offers siblings a future-oriented, actionable direction. (4) developmental path in the transition from assigned helper to professional caregiver, which illustrates a dilemma that occurred while a sibling became a professional caregiver, believing that it not only benefits personal development but also equips them with the knowledge to take care of their autistic siblings, but they experienced rejection from family members. In addition, what appears to be rejected is not a specific caregiving model, but rather professional caregiving provided by siblings. Conclusions: according to these findings, 3 patterns of experiential structure of sibling caregiving were identified: natural caregiving, assigned caregiving, and professional caregiving, and the corresponding displacement within the caregiving structure was defined. The results of this study imply that sibling relationships with autistic individuals cannot be understood without referring to the familistic framework, especially in Taiwanese families.