Parents’ experiences of living with an adolescent diagnosed with an autism spectrum disorder

Abstract

Aims: Parents of children with autism are reported to experience greater parenting stress than parents of neurotypical children. This qualitative study examined parents’ experiences of living with their adolescent with autism to ascertain their perceptions of psychological impact. In addition, parental coping strategies and the contribution of the child’s attendance at mainstream secondary school were considered. Method: Nine parents of adolescents with autism were recruited from their child’s school in the East Midlands. Individual semi-structured interviews were recorded, transcribed, analysed and coded using thematic and content analysis to gain insight into the stressors faced. Findings: Main themes were: difficulties parents faced; effects on relationships; impact upon self; diagnosis and support; coping strategies; school issues; and the future. Challenges faced by the parents were pervasive. The need to maintain predictability in the children’s lives created a sense of burden and restricted spontaneity in the parents’ lives. Communication and social difficulties could lead to outbursts of physical or verbal abuse towards parents. Intense mother-child relationships added to family tensions. Mainstream secondary school was perceived by some as a challenge. Parents reported being mentally and physically tired. All participants used a range of problem-focused coping strategies and humour. Social support, positive reframing and avoidant strategies were used variably. Having a diagnosis of autism helped both parents to work together and accept the child’s difficulties. Additional support was often dependent on family circumstances. Conclusions: To assist the best outcomes for young people with autism, collaborative working and clear communication within the family unit and between family, schools and support services is imperative.