Siblings of children with autism spectrum disorder. Distressed and restricted in their quality of life?

Abstract

Background: Siblings of chronically ill and/ or disabled children may have an increased risk of developing behavioural problems; this is particularly true for siblings of children with Autism Spectrum Disorder (ASD). Methods: Distress (LARES sibling questionnaire) and quality of life (QoL; KIDSCREEN) of 5 siblings of children with ASD were examined using self- and external assessment (parents). Guideline-based interviews were conducted with the siblings and their parents and analysed using qualitative content analysis according to Mayring. Results: The siblings were between 12 and 15 years old. Both siblings and parents described in total low to medium distress (LARES). Distress resulted from sibling relationship, school competence, disease knowledge and social integration. QoL described by the children resembled the normative sample; parents described a decreased QoL in the subscales body (M = 63.75, SD = 28.09), self-esteem (M = 63.75, SD = 11.18) and family (M = 67.05, SD = 02.12) - these results differ from the normative sample. Interviews revealed that healthy children have to take responsibility for their siblings with ASD. Parents assume that the healthy children hardly suffer from the ASD of the sibling, but their children were "annoyed" by ASD-associated behaviour and partly feel "treated unfairly". The healthy children wish that their sibling no longer suffer from ASD or that their sibling would behave "normally". Conclusion: Siblings of children with ASD are not restricted in their QoL, contrary to the parents’ ratings, but they feel stressed by ASD-associated behaviour and the transferred responsibilities.