Quality of Life in Families With a Transition-Age Young Adult on the Autism Spectrum From the Perspective of Adult Sisters

BACKGROUND: Characteristics of autism spectrum disorder (ASD) present unique challenges to families. Raising children with ASD is energy intensive and time consuming and may necessitate a loss of familial roles and productivity. Transitioning to adulthood is particularly challenging for those with ASD and their families. Families are often faced with increased caretaking demands (Graetz, 2010). This impacts family quality of life (FQOL), or the dynamic sense of well-being of the family. Research suggests that quality of life (QOL) of siblings is affected by the sibling with ASD, yet findings are inconsistent. Some studies suggest that typical siblings have restricted family interactions and reduced support; others find a high level of resilience. Discrepancies may be attributed to factors like severity of ASD, gender of the typical sibling, and age or number of siblings (Howlin, Moss, Savage, Bolton, & Rutter, 2014).

PURPOSE: The purpose of this qualitative phenomenological study was to explore FQOL in families with a young adult severely impacted by autism from the perspective of adult sisters. The researchers planned to examine all siblings; however, only sisters responded to requests for interviews, which may point to differences between brothers and sisters. Research questions were as follows: How do sisters describe their QOL (past, present, and future)? How do they describe experiences growing up? How have services and supports for their brother or sister affected their FQOL? How have sisters’ roles and occupations been impacted by their sibling?

METHOD: Participants were 11 sisters of transition-age young adults with ASD, recruited from families who had participated in previous phases of research on FQOL (Demchick, Eskow, & Crabtree, 2014). Sisters ages 18–30 participated in a 1- to 2-hr semistructured interview that was recorded and transcribed with permission and a second phone interview to confirm findings. Transcripts were read and coded by two investigators to ensure trustworthiness. Data were analyzed by extracting important statements that provided an understanding of how the participants experienced the phenomenon of being a sister of an individual with autism. Data were organized into meaningful clusters, and initial codes were formed. Researchers approached the data with an open attitude to let the meaning emerge. Clusters of meaning were tied together into themes. Atlas.ti (Berlin, Germany) was used to manage data.

RESULTS: Four themes emerged. The characteristics of autism impacted sisters’ experiences and quality of life. Limited supports restricted participation of those with ASD as well as of the sisters. A sibling with autism positively affected the sisters’ personal attributes and occupations. As parents aged, all sisters planned to assume some caregiving responsibility for their sibling. Additionally, although most of the sisters were from two sibling families, the sisters from larger families reported that sisters assumed far more responsibility for the brother or sister with ASD than brothers.

CONCLUSION: Most sisters of individuals with ASD perceived their FQOL as positive, but suggested that more supports and services for themselves and their sibling, especially during puberty and the transition process, would benefit their overall participation and QOL. Results emphasize the importance of supports and services in meeting family needs and suggest a role for occupational therapy practitioners in supporting family members. As parents age, sisters may be integral to the care of their sibling with autism, and therefore it is important to understand their perspectives (Burke, Fish, & Lawton, 2015).

References

Burke, M. M., Fish, T., & Lawton, K. (2015). A comparative analysis of adult siblings’ perceptions towards caregiving. Intellectual and Developmental Disabilities, 53, 143–157. https://doi.org/10.1352/1934-9556-53.2.143

Demchick, B. B., Eskow, K. G., & Crabtree, L. A. (2014). Autism and transitioning youth: A pilot study of sensory processing and family quality of life. Journal of Occupational Therapy, Schools and Early Intervention, 7, 54–69. https://doi.org/10.1080/19411243.2014.898492

Graetz, J. E. (2010). Autism grows up: Opportunities for adults with autism. Disability and Society, 25, 33–47. https://doi.org/10.1080/09687590903363324

Howlin, P., Moss, P., Savage, S., Bolton, P., & Rutter, M. (2014). Outcomes in adult life among siblings of individuals with autism. Journal of Autism and Developmental Disorders, 45, 707–718. https://doi.org/10.1007/s10803-014-2224-5