Mother's experiences of the transition of young people with autism spectrum disorder to adult care

Abstract

Purpose: Research has shown that the transition planning of young people with autism spectrum disorders from child to adult-directed services, to be both problematic and limited in function. Mothers of children with autism spectrum disorders have been shown to be at an increased risk from maternal mental health problems, and often taken on the role of care co-coordinator during the transition period. The current study sought to explore the experiences of transition of mothers’ of young people with autism spectrum disorders in the United Kingdom (UK). Method: Interpretative phenomenological analysis was utilized in the analysis of six semi-structured interviews of mothers. Findings: Three superordinate themes were identified: Negative experiences, Resources to cope, facilitating self-preparation. All mothers had an adverse emotional response to transitioning their children from youth to adult services and all indicated a struggle with regards to their control over the process. In order to manage their negative feelings, some mothers adopted an activist attitude. Almost all mothers acknowledged the importance of support from other parents who had a child with an autism spectrum disorder. Practical implications: This study highlights the perceived lack of support and service provision for families with children with disabilities approaching adulthood. Originality/Value: This is the first study to identify the important role parent support groups may have in cultivating resilience during the transition from child to adult services.