ESRC UBEL-DTP Postdoctoral Fellowship (Stewart/Mandy) - Quality of Life, Social Isolation, and Loneliness in Middle-aged and Older Autistic Adults

Approximately ~1% (or 650,000) of the UK population are autistic, with ~240,000 of them being over the age of 50. Despite this large and growing number of middle-age and older autistic adults in the population, little is known about what happens to autistic people when they grow old. As older age marks a period of health and support-need changes, information about autistic ageing is vital to ensure autistic people receive the support they need, to ensure they live long and happy lives. One important issue is the experience of isolation and its link with poor mental health. Younger autistic people often report feeling socially isolated and lonely, which has been found to have a profound negative impact on mental health and quality of life. While social isolation and loneliness can occur at any age, the experiences become more common with age, with over 2million people age 50+ in the UK having poor social contact. Despite this, it has yet to be examined whether middle-age and older autistic adults are at increased risk of these experiences. As such, the proposed research will address important questions about ageing on the autism spectrum, and will inform what type of support autistic people may need as they grow old.

To address this important overarching aim, several steps will be taken during this fellowship:

- First, a large dataset (collected in Spring 2019) comprised of over 400 middle-aged and older autistic and non-autistic people will be analysed. This cross-sectional analysis will explore the experiences of social isolation, loneliness, mental health, and quality of life. Factors that protect people from social isolation and loneliness will also be explored.


- Second, we will recontact these participants in Spring 2023 and ask them to repeat the original online survey, which will enable the longitudinal analysis of how experiences of social isolation, loneliness, mental health, and quality of life change with age.

- Third, interview transcripts exploring quality of life (collected in Winter 2019) from 30 middle-aged and older autistic and non-autistic people will be analysed. Thematic analysis will be used to examine the similarities and the differences in the experiences that influence quality of life between the autistic and non-autistic participants.

The findings from this research will be shared widely, including in peer reviewed journals, conference presentations, and in easy-to-read infographics created by the research team.

Additional activities will also be undertaken during the fellowship, such as the continued development of an autism and ageing researcher network, which was founded in late 2019. This network will aim to foster collaborations between research groups and the pooling of resources, which will help improve the scale and the scope of the autism and ageing research being conducted.