The Lifeworlds of Autistic Adults with Profound Learning Disabilities
Research type
Research Study
Full title
The Lifeworlds of Autistic Adults with Profound Learning Disabilities: An Inclusive Ethnographic Case Study
IRAS ID
252183
Contact name
Sarah Vicary
Contact email
Sponsor organisation
Open University
Duration of Study in the UK
0 years, 11 months, 28 days
Research summary
This research will look at the experiences of autistic adults with profound learning disabilities within a day support service. It will focus on individuals with high support needs in the decade after they have left special education needs school, termed the transition to adulthood. Many autistic people with profound learning disabilities find change extremely difficult to understand and cope with and the introduction of a new environment, new routine and new people can result in high levels of anxiety and distress. The transition is managed by family members, service staff and related professionals (e.g. social workers) who make decisions on behalf of the individual with an aim to develop a person centred support package. It is a highly complex period that may contribute to the poor physical and mental health outcomes associated with people from this group and as such, it is a priority that researchers gain first-hand accounts of support during this period.
To do this, this research will follow an ethnographic approach in which the researcher spends time with autistic adults with profound learning disabilities within their day support service. Through participatory observations, the researcher will construct accounts of the experiences of the participants over the course of a year, paying close attention to how and what they communicate. Furthermore, support staff and family members of the three participants will become co-researchers, providing their perspectives on the participants' experiences through field notes and archive material, such as photos and artefacts. The final element of the research will be to explore how the service responds to the voices of the participants to understand how this may guide their experiences; this will include observing how support staff engage with the participants and examining how support plans represent their views and perspectives.
REC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
18/WM/0322
Date of REC Opinion
1 Feb 2019
REC opinion
Further Information Favourable Opinion