How does having a sibling with autism spectrum conditions impact on adolescents' psychosocial adjustment?

The rationale for this study was based on the paucity of current literature about adolescents whose siblings have autism spectrum conditions (ASCs). This sparse research has revealed mixed results, some of which appears to suggest that there may be negative psychosocial outcomes for adolescents whose siblings have ASCs, and some of which indicates that these adolescents are able to adjust relatively well. Furthermore, most of the limited literature around the adaptation of adolescents whose siblings have ASCs is quantitative in its methodology. This study proposed the use of qualitative methodology to discover what experiences adolescents could reveal about having a sibling with ASCs and how these experiences might impact on these adolescents’ psychosocial adjustment.

There were four main aims of the study: (1) to explore the experiences of adolescents whose siblings have ASCs; (2) to explore how these experiences might impact on these adolescents’ psychosocial adjustment; (3) to assess for possible implications for service delivery; (4) to generate a theoretical account of the pertinent factors influencing adolescent psychosocial adjustment, with a view to identifying possible areas for future research.

Photo elicitation methodology was used to help gather data alongside semi-structured interviews conducted with 11 adolescents between the ages 12-18 years whose siblings were diagnosed with ASCs. Grounded theory was employed to analyse the data. Four main themes were identified from the data: experiencing ASCs in daily life; adolescent psychological factors; social impact of ASCs on interpersonal relationships; adolescents’ perceptions of siblings with ASCs. From these themes, a theoretical model was developed to demonstrate what adolescents identify from their subjective experiences as being crucial factors for adaptive psychosocial adjustment to living with a sibling with ASCs. The initial conclusions illustrated by the theoretical model suggest that adolescents feel most able to cope with and adjust psychosocially to living with a child with ASCs when they experience open and collaborative channels of communication with parents; supportive social networks that include friends, peers, family, extended family; positive perceptions of their siblings, including realistic hopes for their siblings’ development; knowledge and understanding of ASCs and a perceived sense of self-efficacy in being able to manage their siblings in times of distress. Negative hypothesis testing was subsequently employed to assess the validity of the theoretical model. This scrutiny of the theoretical model highlighted the complexities relating to how each of the participant’s accounts fitted with the proposed model. In light of this, whilst the theoretical model derived from this study can be helpful for providing an overview for some of the factors that appear to feature in how adolescents adjust psychosocially to living with a sibling with ASCs, it is ambitious to claim anything beyond this given that there are any number of factors specific to an individual’s circumstances that will also influence how an adolescent adjusts psychosocially to living with a sibling with ASCs. This raises several clinical and research implications.