Exploring the Perspectives of Siblings of Autistic Adults With Distressing Behavior: Perceptions of Positive and Negative Impacts.

PURPOSE: Siblings of individuals with disabilities, including autism, often plan to assume future caregiving roles. Yet, most extant research relies on convenience samples wherein the autistic brother/sister does not have distressing behaviors. In the limited research about siblings of individuals with distressing behaviors, siblings often report negative and distant sibling relationships. To discern the perceived effects of distressing behavior on siblings and its impact on future caregiving roles, it is critical to explore the perspectives of adult siblings of autistic individuals with distressing behaviors.

METHODS

We conducted individual interviews with sixteen siblings of autistic adults with distressing behaviors. Using Trauma Exposure Theory and the Hidden Talents Framework, we explored their perspectives including positive, negative, and caregiving effects.

RESULTS

There was a nuanced effect of having a sibling with distressing behavior with participants reporting some benefits (e.g., increased resilience) and some negative impacts (e.g., worse mental health). Further, participants reported effects on their life choices (e.g., decisions about dating, marriage, and family planning) that conflict with extant research.

CONCLUSION

Implications for research and practice are discussed.