Older autistic people must be involved in decisions about their health and social care services, a new research project from Heriot-Watt University in Edinburgh and charity Scottish Autism suggests.
The project, titled “Autism, Ageing and Social Care”, used creative methods to begin a wider conversation about the support that autistic people will need when they get older.
The research team worked with autistic film-makers to create a documentary about the hopes, concerns and needs of autistic people as they get older.
Workshops with autistic adults, whose ages range from 45 to 80, and care professionals, led to a series of artworks reflecting on what good support looks like for this population in older age.
The project was funded by the Arts and Humanities Research Council (AHRC), which is part of UK Research and Innovation (UKRI) – the UK’s national funding agency for investing in science and research.
Professor Mary Stewart, Director of Social Interaction, Mental Health and Wellbeing at Heriot-Watt University, and member of the University’s Global Research Institute in Health and Care Technologies, is the academic lead for the project.
Professor Stewart said: “Using filmmaking and art helped us to ask autistic people who communicate in diverse ways to express what’s important to them and how to plan for ageing and change.
“Everybody finds ageing difficult, but it can be particularly challenging for autistic people to access appropriate health and social care provision.”
Dr Joe Long, Director of Practice and Innovation at Scottish Autism, was a co-researcher on the project. He said: “The children Scottish Autism first supported in the 1960s are now reaching retirement age, so we know there’s a real need plan properly for the support that older autistic people will need.
“It’s really important that those future services are shaped by the people who use them, so this project is about starting those conversations and amplifying the voices of older autistic people.”
In the documentary film, autistic adults are interviewed by Iceberg Productions, a group of autistic filmmakers who are supported by Scottish Autism, and The Untold Motion Picture Company, which specialises in filmmaking for the voluntary and community sectors.
In the artworks, older autistic people’s visions of ageing and support are captured in hand-drawn scenes and diagrams by artist Clare Mills of Listen, Think, Draw.
Emma Stanley, a co-researcher on the initiative and a member of the Iceberg Productions team, sadly passed away during the project. Speaking in the films, in which she acted as interviewer, Emma said: “It’s an important project, because no matter what walk of life you’re in, you get old.
“My mum died a couple of years ago and there’s still not enough help out there for autistic people suffering bereavement.
“It will get more important when you get older.”
The researchers say the project provides insights into how to start conversations around what a good life will look like in older age and the need to support understanding of change and loss.
The project also shows the need for creating safer spaces for those dialogues, and for working together to develop a shared understanding of a person’s need – as well as the need for effective care pathways for older autistic people.
The NHS estimates that at least one in 100 people in Scotland is autistic, with some research showing more than double that number. Many older autistic people will not have a diagnosis. Scottish Autism says these figures underline the need to plan properly for inclusive and person-centred services in older age.
The findings of the research will be presented at an event in the Scottish Parliament at Holyrood today (Wednesday 19 March).
The event will be chaired by Daniel Johnson MSP and attended by Minister for Social Care, Mental Wellbeing and Sport, Maree Todd. The event will include a screening of the documentary and display of the artworks created from the project.
As a result of this research, project partners are calling for:
- Timely, multi-agency planning for transitions across the lifespan of autistic people, including the transition to older age
- Tools and resources to support autistic people to understand the changes they may face and to co-design their care as they age
- Holistic care pathways in older age, incorporating multi-disciplinary collaboration and bringing healthcare into familiar and safe environments for autistic people
- Data, transparency and accountability relating to the support provided for older autistic people and to the resulting outcomes. This will help maximise the lessons learned, in order to establish best practice.