Parents' experiences of their adult child's Asperger's diagnosis
Research type
Research Study
Full title
Exploring the experiences of parents whose child has received a diagnosis of Asperger's syndrome in adulthood
IRAS ID
235293
Contact name
Thomas Schroder
Contact email
Sponsor organisation
University of Nottingham
Duration of Study in the UK
0 years, 5 months, 5 days
Research summary
Asperger’s syndrome (AS) is a lifelong condition characterised by difficulties with social interaction and repetitive or restricted interests and behaviours. AS is usually diagnosed in childhood, but adult diagnosis is a growing phenomenon.
Research on parents of children has found that they often go through a process of adaptation, acceptance and re-evaluation of their own and their child’s identity following diagnosis, and may experience a loss of their sense of self and their role. Studies exploring the experiences of adults have found similar themes around changes in identity and self-acceptance.
As yet, there is no research concerning the experiences of parents whose children receive a diagnosis of AS in adulthood. The aim of the study therefore is to explore the experiences of parents whose adult child has recently been diagnosed with AS in terms of how they make sense of the diagnosis, any impact it has on their relationship with their child, how it has changed their understanding of their child and themselves, and their own identity. Information from this study will help us to better understand any impact that adult children’s diagnosis of Asperger’s Syndrome has on parents, and may help to shape future support given to parents in similar situations.
Recruitment will begin once the study has received ethical approval and will continue until December 2018. Up to 15 participants who are parents of adult children diagnosed with Asperger’s Syndrome in the preceding 3 to 6 month period will be recruited from an adult AS diagnostic service. Those who consent will take part in a one-off interview about their experiences lasting 60 to 90 minutes, which will be audio-recorded, transcribed word for word, analysed using an approach called Thematic Analysis and written up as a report.
This research is being organised and funded by the University of Nottingham.
REC name
East Midlands - Leicester South Research Ethics Committee
REC reference
18/EM/0149
Date of REC Opinion
16 Jul 2018
REC opinion
Further Information Favourable Opinion