Noonan Hester, O' Donoghue Isabelle, Wilson Charlotte
School of Psychology, Trinity College Dublin, Dublin, Ireland.
Psychology Department, St Michaels House, Dublin, Ireland.
J Appl Res Intellect Disabil. 2018 Nov;31(6):1144-1153. doi: 10.1111/jar.12474. Epub 2018 Jun 28.
Supporting an adult with autism spectrum disorder (ASD) can be associated with family stress but also with personal growth and resilience. Research providing insight into how typically developing siblings make sense of their unique sibling relationships in adulthood remains limited.
Using interpretative phenomenological analysis, this study explored subjective experiences of eight siblings of adults with ASD and co-occurring intellectual disability.
Analysis of interview transcripts revealed a complex lived experience explained by the overarching theme "engaging with and navigating limbo", which was characterized by commitment to the sibling relationship, power tensions in the family, uncertainty about the future and negotiating the tension between relational closeness and distance.
Using family systems theory, overregulation and closed communication emerged as processes relevant to families living with ASD. Clinical opportunities to support family communication, change tolerance and belonging are discussed.
支持患有自闭症谱系障碍（ASD）的成年人可能会给家庭带来压力，但也会带来个人成长和恢复力。关于正常发育的兄弟姐妹如何理解他们在成年后独特的手足关系的研究仍然有限。
本研究采用解释现象学分析方法，探讨了8名患有ASD并伴有智力残疾的成年人的兄弟姐妹的主观体验。
对访谈记录的分析揭示了一种复杂的生活经历，其总体主题为“置身于边缘状态并与之周旋”，其特点是对手足关系的承诺、家庭中的权力紧张关系、对未来的不确定性以及在关系亲密与疏远之间进行权衡。
运用家庭系统理论，过度监管和封闭沟通成为与ASD患者家庭相关的过程。讨论了支持家庭沟通、改变容忍度和归属感的临床机会。
