Quality of Life in Families with a Transition Aged 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 may necessitate a revision of familial roles and productivity. Transitioning to adulthood is particularly challenging for those with ASD and their families, as family members 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 a brother or sister 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 of severity of ASD, gender of the typical sibling, and age or number of siblings (Howlin et al., 2014).

Objectives: 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. 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:

How do sisters describe their quality of life (past, present, and future)?

How do sisters describe experiences growing up?               

How have services and supports for a sibling with ASD affected their family quality of life?

How have sisters’ roles and occupations been impacted by a sibling with autism?

Methods: Participants were eleven sisters of young adults with ASD, recruited from families who had participated in previous phases of research on FQOL (Demchick, Eskow, & Crabtree, 2014). Sisters aged 18 -30, participated in a 1-2 hour semi-structured interview which was recorded and transcribed with permission and a second phone interview to confirm findings. Transcripts were coded by two investigators to ensure trustworthiness. Atlas.ti, was used to manage data. Important statements that provided an understanding of how the participants experienced the phenomenon were extracted from transcripts. Data were organized into meaningful clusters, and initial codes were formed. Researchers approached the data with an open attitude to allow meanings to emerge.  Clusters of meaning were tied together into themes.

Results:  Four themes were identified. 1) Characteristics of autism impact sisters’ experiences and quality of life.  2) Limited supports restrict participation of those with ASD as well as that of the sisters. 3) A sibling with autism positively affects the sisters’ personal attributes and occupations. 4) As parents age, all sisters plan to assume some caregiving responsibility for their sibling with ASD.  Additionally, the sisters from families of more than two children reported that sisters assume far more responsibility for the sibling with ASD than brothers did.

Conclusions:  Most sisters of individuals with ASD perceive their FQOL as positive, but suggested that more supports and services for themselves and their siblings with ASD, 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.