The Sibling Experience: Quality of Life and Adjustment in Siblings of Individuals with Autism Spectrum Disorder in Adolescence

Background:  

The sibling bond is the marathon of human connection; it is the longest lasting relationship, enduring from the birth of the youngest sibling to the death of the first to go. It is reasonable to assume the importance of this relationship across the lifespan, but what impact arises when the normal sibling relationship is altered by developmental disability?

ASD is a particularly stressful disability for families (Orsmond & Seltzer, 2009; Quintero & McIntyre, 2010). With the large commitment that family members make to ensure an individual with autism has an environment that caters for their complex needs, it is empirically intuitive to assume that quality of life (QoL) is impacted in these families. This has yet to gain scholarly support, with a lack of research focusing on QoL outcomes in ASD families. In endeavouring to address the gaps in the autism literature pertaining to sibling developmental trajectories, the current study aimed to examine the QoL of autism siblings within the context of a biopsychosocial model of teenage experience. 

Objectives:   

Siblings of children with ASD have been shown to exhibit higher levels of internalising and externalising disorders (Rodrigue, Geffken, & Morgan, 1993; Ross & Cuskelly, 2006), social and behavioural adjustment problems (Orsmond & Seltzer, 2007), hassles with sibling behaviour (Moyson & Roeyers, 2011), and guilt (Opperman & Alant, 2003). Although this literature is well established, adolescent siblings are afforded less research attention than children and adults. The objective of the present study was to investigate the factors contributing to psychosocial outcomes of young people growing up with a sibling with autism. Specifically, it aimed to examine the profile of psychological adjustment, stress levels, and QoL of 13-14 year old siblings. 

Methods:  

Two matched groups of participants were recruited: a group of 13-14 year old siblings of individuals with autism and a control group. Each adolescent and their parent completed a survey. The adolescents responded to items regarding: Quality of Life; Daily Hassles, Coping and Accommodations; Internalising and Externalising Disorders; and, Stress and Cognitive Processes. The parents completed questionnaires on: Quality of Life of the Typically-developing Child; Severity of ASD; Family Coping; and, Parent Well-being.

Results:   

Data is currently being analysed to determine group differences and predictors of sibling QoL.

Conclusions:

The National Disability Insurance Scheme (NDIS), an Australian funding program for families of people with disabilities, has identified that financial support is critical for siblings of people with disabilities. However, policy makers are yet to devise policies that inform practice in this area. Increased knowledge of the sibling experience will allow policy development to cater for siblings within the family unit in a meaningful way. Identification of at-risk adolescents will allow funding to be appropriately channelled into sibling support programs to address diminished QoL; individual counselling for internalising and externalising disorders; and psychoeducation resources for families. This study is the first of its kind, leading the way for the development of evidence-based autism-specific sibling support interventions.