“We are all there silently coping.” The hidden experiences of parents of adults with Asperger syndrome

Abstract

Background The experiences of older parents of adults with Asperger syndrome have not been explored in the research literature.

Method Four families who had middle-aged offspring with Asperger syndrome were interviewed (3 mothers and 1 couple), and the interviews were analysed using interpretative phenomenological analysis (IPA).

Results Six themes emerged from the analysis: (a) providers of “hidden” support, (b) role of advocate, (c) social isolation, (d) intrafamilial relationships, (e) support for parents, and (f) future concerns.

Conclusions The findings of this study offer insight into the experience of parents of adult sons with Asperger syndrome. Implications for future support interventions and research are suggested.

Keywords:

• adults
• Asperger syndrome
• family
• independence
• support

Acknowledgements

This research was supported by Autism Cymru. The funding body has not imposed any restrictions on free access to or publication of the research data. There are no financial or non-financial conflicts of interest, such as direct or indirect financial benefit.

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.