Adults’ prior experiences of living with undiagnosed ASD
Research type
Research Study
Full title
Adults’ prior experiences of living with undiagnosed Autism Spectrum Disorder.
IRAS ID
187204
Contact name
Claire Evans
Contact email
Sponsor organisation
Lancaster University
Duration of Study in the UK
0 years, 10 months, 11 days
Research summary
The definition of Autism Spectrum Disorder (ASD) has recently been revised in the publication of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) in May 2013 (American Psychiatric Association, 2013). ASD is now used as a single umbrella term to represent a continuum on which individuals’ will fall (American Psychiatric Association, 2013).
In terms of the occurrence of ASD, research suggests that the number of children diagnosed with ASD has gradually increased over the past 20 years, with one in a hundred children now being diagnosed with ASD (Glazzard & Overall, 2012). This is compared to earlier estimates of 4 to 6 cases per 10,000 people in 1980 (Fombonne, 2001). It was during this time when children, who met the diagnostic criteria for ASD, were found to be often misdiagnosed as having an ‘intellectual development disorder’. This resulted in children being segregated from their peers, excluded from classrooms and in some cases, institutionalised (Glazzard & Overall, 2012).
A search of the literature base indicates that qualitative research in the area of ASD has neglected to consider individuals’ prior experiences of living with undiagnosed ASD. Existing research indicates that living with undiagnosed ASD can result in individuals experiencing secondary difficulties including anxiety and depression (Spicer, 1998). Therefore, the present study aims to build on the existing literature base and gain insight into what has been an overlooked area by exploring individuals’ prior experiences of living with undiagnosed ASD.
A qualitative research design involving semi-structured interviews will be used to explore individuals’ experiences of living with undiagnosed ASD. Participants will be recruited from three sites across three NHS trusts; Five Boroughs Partnerships NHS Foundation Trust, Mersey Care NHS Trust and Greater Manchester West Foundation Trust and invited to take part in an interview which will last up to one hour.
REC name
North of Scotland Research Ethics Committee 1
REC reference
15/NS/0110
Date of REC Opinion
15 Oct 2015
REC opinion
Favourable Opinion