Engaging with and navigating limbo: Lived experiences of siblings of adults with autism spectrum disorders
Journal of Applied Research in Intellectual Disabilities
Published online on June 28, 2018
Abstract
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Abstract
Background
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.
Method
Using interpretative phenomenological analysis, this study explored subjective experiences of eight siblings of adults with ASD and co‐occurring intellectual disability.
Results
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.
Conclusion
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.
- Journal of Applied Research in Intellectual Disabilities, Volume 31, Issue 6, Page
1144-1153, November 2018.