Autism & Ageing Project

In a pioneering creative project, Scottish Autism and Heriot-Watt University have joined forces to better understand the experiences of older autistic adults with learning disabilities. The project will use filmmaking and art to explore the hopes, concerns and needs of this group and to co-produce a vision of future social care services.

Funded by the Arts and Humanities Research Council (AHRC), the seven-month partnership, entitled Ageing, health, and social care: the meaningful engagement of autistic people with learning disabilities, begins this month. 

The use of creative arts will provide a means of inclusion in research for a group that is often under-represented in research literature.

Autistic people with learning disabilities do not often have their voices heard in research, and there remains too little attention on good support for this group in older age.

Iceberg Productions, a group of autistic filmmakers who are supported by Scottish Autism and The Untold Motion Picture Company, will interview autistic people with learning disabilities who are aged 55 and over to create a new documentary. Interviewees will talk about their experiences of ageing and the kinds of support provision that they would like as they get older.

The film will then be presented at a series of workshops in which other members of the autistic community who are supported in social care, families, and professionals will be invited to contribute to a collective piece of art, expressing their own hopes and visions for health and care provision for older autistic people who have learning disabilities.

Professor Mary Stewart, Director of Social Interaction, Mental Health and Wellbeing at Heriot-Watt University, is the academic lead for the project. She explains: “The motivation behind the project came from the unfortunate reality that autistic people with learning disabilities do not often have their voices heard in research, and there remains too little attention on good support for this group in older age.

“We aim to change this through raising awareness and developing dialogues around what good support looks like for this group, showing that there is an underserved population of older autistic adults, and that autistic people with learning disabilities views can be captured in a meaningful way. We know that using art as a tool for discussion can be very effective and allows for a range of ways to engage with discussion.  The outcomes of the project will ultimately be used to raise awareness and provoke discussion with service professionals, policymakers and the wider community in Scotland and beyond.” 

Dr Joe Long, Research and Policy lead for Scottish Autism, added: “The first generation of autistic children to be supported by Scottish Autism in the 1960s are now reaching retirement age. It is vital that the voices of those supported autistic people are heard in developing services for this age group.

“There is very little research on the needs of older autistic people, and too often those with learning disabilities are not meaningfully included in research. This project will be a truly co-produced endeavour, providing different artistic mediums through which the hopes and aspirations of supported autistic people can be expressed.”

The film and the artworks will be presented to policymakers, professionals and the wider public at locations across Scotland at the end of the project in March 2024. 

Emma Stanley, a co-researcher on the project who is supported by Scottish Autism and who acts as interviewer for Iceberg productions, shared her thoughts on the theme of ageing.

“My support that I get now is ok, but I will probably need some more as I’m getting older,” she said. “It’s going to be more complex, the staff will need more training.” 

Emma added: “A year ago I lost my Mum – there should be more on bereavement.”

But she also added her hopes for more positive reflections.

“I would like people to smile and be happy – think about the positive points as well as the negative,” she said.

Emma described being involved in the project as a “breath of fresh air, something to focus on.”

Emma was involved in naming the production company, ‘Iceberg Productions,’ made up of supported autistic people, when it was founded in 2018.

“Most of the iceberg is underwater – you only see the tip,” she explained.

The team felt that this was a good way of thinking about how autistic people are perceived.

“It’s not always what you see” Emma said.