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

Abstract: This fellowship's primary aim is to publish vital research on the under-researched topic of autistic ageing through the analysis of existing data sets collected during my ESRC-funded PhD. This fellowship will also enable a longitudinal follow-up of one of these cohorts, allowing for the study of age-related change in autistic people in middle and older age. Additionally, the fellowship will provide an opportunity to grow a network of autistic ageing researchers that I co-founded in 2019, and to prepare grant and fellowship proposals for my next career step. To fulfil these aims, I will pursue the following objectives: Objective 1, Analysis of Pre-Existing Data: This fellowship will allow for the analysis and dissemination (i.e., peer reviewed publications and conference presentations) of two data sets I collected during my LISS-DTP funded PhD at King's College London in 2019. The papers produced from these data sets will (i) substantially enhance current understanding of autism in middle and older adulthood and (ii) provide empirical evidence that could inform policy on the support needs of autistic people as they age. Additionally, these papers will (iii) further enhance my position as an early-career researcher, thereby increasing chances of winning funding for future research in this area. The first data set (from the AgeWellAutism study) contains cross-sectional quantitative and qualitative data that examines the quality of life, experiences of social isolation and loneliness, and other mental health experiences of a cohort of 400+ middle-aged and older autistic and non-autistic adults. The second data set contains qualitative data from 30 middle-aged and older autistic and non-autistic adults who completed semi-structured interviews about their quality of life and ageing. While separate studies, these data sets are complimentary, providing large data on the quality of life of autistic people in middle and later life, as well as contextualisation of these experiences. The analysis and write-up of these data sets will be conducted in Months 1-9. Dissemination of this research will occur at UK-based and international conferences occurring in Months 8-10. Additional resources and infographics will also be created for lay audiences. Objective 2, Further Research: This fellowship will allow for a longitudinal follow-up to the AgeWellAutism study, by recontacting participants to complete the survey ~4 years after their initial participation. Ethics will be sought in Month, with data collection occurring in Month 3-6. Analysis and write-up of this data set will be conducted in Months 10-12. Dissemination of this research will occur at UK-based and international conferences occurring after the time frame of this fellowship. Objective 3, Network Development: This fellowship will allow for me to continue networking and collaborative activities that I have been involved in since the completion of my PhD, namely the further development of a network of autistic ageing researchers that I co-founded in late 2021. This network is currently comprised of over 20 researchers from 4 lab groups based in the UK, Europe, and the USA. We intend to continue the growth of this network of researchers, to facilitate networking of those interested in autistic ageing, and to provide opportunities for collaboration and sharing of resources in this highly under researched population. This network development will occur throughout the duration of the fellowship, and will continue into my future career. Objective 4, Proposal Preparation: This fellowship would be to dedicate time to the preparation of funding proposals for pathway-to-independence post-doctorate fellowships and other grant funding opportunities that will enable me to continue my research career in autism and ageing. Proposal preparations will occur throughout the fellowship, with the aim of securing grant funding or a fellowship that would commence as this fellowship ends.

Lay abstract: 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.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: MENTAL HEALTH