Mothers’ experiences of the transition of young people with autism spectrum disorder to adult care

ABSTRACT

Research has shown 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 have 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. Interpretative phenomenological analysis was utilised in the analysis of six semi-structured interviews of mothers. 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 regard 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. This study highlights the perceived lack of support and service provision for families with children with disabilities approaching adulthood. 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.

KEYWORDS:

• Transition
• autism
• support
• mothers
• experiences

Acknowledgements

We would like to express our gratitude to all the mothers who kindly gave up their time to take part in the study.

Disclosure statement

No potential conflict of interest was reported by the authors.