A Pilot Study: Daily Experiences and Sibling Relationship among Siblings of Adolescents and Adults with Autism Spectrum Disorders in Taiwan

前驅研究：青少年和成年自閉症者兄弟姐妹之日常生活經驗與手足關係

No other familial relationship lasts longer than the sibling relationship. Sibling relationships are one of the most important family relationships in Chinese families. However, there is no published research on the experiences of Taiwanese siblings who have a brother or sister with an autism spectrum disorder (ASD). The purpose of this study was to examine how siblings of adolescents and adults with an ASD in Taiwan view the relationships with their siblings. We recruited 29 Taiwanese siblings (age ranged from 11 to 27) who had a brother or sister with an ASD. Self-reported written questionnaires were completed by the sibling and included ratings of positive affect in the sibling relationship, depressive symptoms, and a report of whether or not siblings engaged in six shared activities over the past year. Data were presented by descriptive statistics. Taiwanese siblings engaged in several shared activities over the past year. The most frequent activities were meal (93.1%), shopping (93.1%), and visit activities (93.1%). The next frequent activities were vacation (75.9%), recreation (72.4%), and medical (62.1%) activities. Siblings perceived significantly lower levels of positive affect from their brother or sister with an ASD compared to their positive affect toward their brother or sister with an ASD. Positive affect in the sibling relationship differed between the same-gender and mixed gender sibling dyads among Taiwanese siblings. Over half of siblings (58.6%) reported a high level of depression as the cut-off score of 16 has been used. The majority of examined adult siblings (71.4%) indicated that they had a high level of depression. Siblings experienced both positive and negative feelings when living with their brother or sister with an ASD. Parents should pay attention on siblings’ adjustment. Adult siblings may have at increased risk of depressive symptoms, which may be worth replicating with larger samples. 手足關係在華人家庭中是相當重要的一種家庭關係，對自閉症者來說，手足在其一生中扮演極重要角色。然而，目前國內相關文獻對於青少年和成年自閉症者手足之生活經驗的研究仍付之闕如。本研究的目的是探討台灣青少年和成年自閉症者兄弟姐妹的生活經驗以及如何看待他們的手足關係。本研究使用橫斷性研究，採取立意取樣的方式，從自閉症協進會以及自閉症基金會的會員為取樣的對象。我們招募了29位有一個兄弟或姊妹為自閉症者的手足(年齡介於11至27歲)。參與者完成自填正向情感量表、流行病學研究中心憂鬱量表及共同參與活動等相關問卷。量化的資料以描述性統計分析。過去一年中，手足與自閉症者共同參與的活動包括：出去餐廳吃飯(93.1%)、去購物或出去辦事(93.1%)、去拜訪親友或聚會(93.1%)、渡假(75.9%)、從事娛樂活動(72.4%)以及去看醫生或醫院門診(62.1%)。手足自陳對於自閉症兄弟姊妹的正向情感明顯高於感受來自兄弟或姊妹對自己的正向情感。手足關係中的正向情感在同性別與不同性別的手足之間有顯著的差異。有58.6％的手足超過憂鬱症篩檢切分點(16分或以上)。超過七成(71.4%)的成年手足之憂鬱程度達到憂鬱症篩檢切分點。探討自閉症者手足其生活經驗與手足關係，能提醒父母重視正常手足的調適。而成年手足罹患憂鬱症狀的風險較高，此研究結果值得進一步擴大研究樣本。