4 Questions For: Autism and Ageing project (MICRA)
Team members from a MICRA-funded research project on autism and ageing answer four key questions from NdC Founder & Director, Jill Corbyn. MICRA is the Manchester Institute for Collaborative Research on Ageing (University of Manchester).
Jill approached us to write about our research project on Autism and Ageing. There are lots of competing requests for information and involvement, but her four questions caught my eye. Jill wrote:
Why is the research important?
Why does involvement matter and how has it shaped your work?
How might your findings be useful and help shape services?
Are you aware of any good resources relating to autism and ageing?
Of all the things that could be asked, I loved how these questions cut to the core of what was important about this work for the autistic community. As an autistic PPI contributor to the project, it was the focus on these topics that convinced me to expend precious spoons supporting its development.
01 Why is the research important?
While there has been progress over the last few years, the stereotype of the autistic individual is still a child. But we grow up and, hopefully, we live into older age. Although the population of older autistic adults is increasing, relatively little is written about our experiences of ageing and our support needs. Only 0.4% of published autism studies over the past ten years have focused on older adults. While there is some fantastic qualitative research on the experiences of older autistic individuals, there are fewer quantitative studies. Further, we know little about perspectives on growing older in autistic people of different age ranges. Our project seeks to address this gap.
The aim of the project is to understand what ageing well means to autistic adults, and how we think services and staff/volunteers can best support us to age well. Members of our team had conducted a related study that interviewed people about these topics. For this study we designed a survey to explore and test these themes with a larger, more diverse sample of autistic people. We are a heterogeneous bunch, and we wanted to consider how these themes differ according to key demographic characteristics.
02 Why does involvement matter, and how has it shaped your work?
The whole aim of this research project is to centre autistic voices. This is not possible if the starting point is a set of themes and questions which reflect non-autistic people’s assumptions and communication style. This project was initiated from priorities expressed by autistic individuals, including from the interview participants, and from members of the Autism@Manchester expert by experience group. The researchers brought their research and grant writing expertise. The autistic members of the team - both researchers and PPI contributors - brought their lived experience, understanding of autistic communication and thinking styles, and connections within the autistic community. Autistic minds are involved at every stage. For example, we have just had a joint meeting to discuss the first round of analysis, with the aim of capturing authentic autistic expression in the interpretation of the data. We will continue with this involvement and hope to be able to share the study results towards the end of this year (2023).
03 How might your findings be useful and help shape services?
In the first instance, I hope that the findings from this research will support autistic individuals to explore and validate their own experiences of ageing. We are all different, but I’ve found enormous value and comfort in reading about the experiences of other autistic individuals. While our needs and aspirations may be atypical, they are still real and valid. A sense of community and positive autistic identity are vital for wellbeing, and shared experience of all parts of life are part of this.
The evidence from this research will hopefully support individual and group discussions with service providers. While service provision is meant to be person-centred, asking for atypical support can be difficult to articulate or dismissed as ‘just personal preference’. Robust evidence of common themes among autistic adults helps explain and justify needs. The work will also inform future research priorities and grant proposals. The research team aims to develop a series of user-informed grant applications that serve to address the issues and needs identified in this project, in order to support autistic adults to age well.
04 We’ve been looking out for resources relating to autism and ageing – are you aware of any?
Mason, D. et al. (2022). Older Age Autism Research: A Rapidly Growing Field, but Still a Long Way to Go. Autism in Adulthood, 4(2).
Lagos, R. S. et al (2021). Older Autistic Adults, In Their Own Words: The Lost Generation. AAPC Publishing
Rose Matthews has collected resources related to autism and ageing here: https://padlet.com/rosematthewsresearch/autism-and-ageing-lm82dpyrf9cij1hq
Cos Michael has written regularly about autism and ageing, e.g. Autistic older women: an interview with Cos Michael (autism.org.uk)
Paul Micallef / Autism from the Inside (2022).Autism and Aspergers in Older Autistic Adults (60+ Years Old) | Patrons ChoiceYouTube
AsperDames Facebook group
Rachel Moseley has collected resources related to autism and menopause here:
Resources and support | Science On The Spectrum
Notes
This research project was funded by the Manchester Institute for Collaborative Research on Ageing (MICRA, University of Manchester). The project team are Dr Kelly Birtwell, Dr Christine Rowland, Dr Donna Bramwell, Dr Emma Gowen, Dr Laura Brown.