A pioneering initiative led by Heriot-Watt University and the charity Scottish Autism is empowering older autistic adults to influence the planning of their health and social care services. The “Autism, Ageing and Social Care” project employs creative mediums, including filmmaking and art, to foster a broader dialogue about the support needs of autistic individuals as they age.

Central to the project is a documentary crafted by autistic filmmakers from Iceberg Productions, a group supported by Scottish Autism, in collaboration with The Untold Motion Picture Company, specialists in community-focused filmmaking. This film captures interviews with autistic adults aged between 45 and 80, delving into their aspirations, concerns, and requirements for the future. Complementing the documentary, workshops with autistic adults and care professionals have inspired a series of artworks by Clare Mills of Listen, Think, Draw, illustrating visions of effective support for this demographic.

Professor Mary Stewart, director of social interaction, mental health and wellbeing at Heriot-Watt University and academic lead for the project, highlighted the significance of these creative approaches. She noted, “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.” Stewart emphasised the unique challenges autistic individuals may face in accessing appropriate health and social care as they age.

Dr Joe Long, Director of Practice and Innovation at Scottish Autism and co-researcher on the project, underscored the timeliness of this initiative. He remarked, “The children Scottish Autism first supported in the 1960s are now reaching retirement age, so we know there’s a real need to plan properly for the support that older autistic people will need.” Long stressed the importance of involving service users in shaping future services, aiming to amplify the voices of older autistic individuals.

Emma Stanley, a co-researcher and member of the Iceberg Productions team, played a pivotal role in the project before her passing. Reflecting on her involvement, Stanley stated, “It’s an important project, because no matter what walk of life you’re in, you get old.” She shared personal experiences, noting the lack of support for autistic individuals dealing with bereavement, and emphasised the growing importance of such support as one ages.

The project offers insights into initiating conversations about what constitutes a good life in older age, supporting understanding of change and loss, creating safe spaces for dialogue, and developing a shared understanding of individual needs. It also highlights the necessity for effective care pathways for older autistic individuals.

Estimates from the National Autistic Society indicate that more than 1 in 100 people are autistic, with at least 700,000 autistic adults and children in the UK. But  many older autistic individuals may remain undiagnosed, underscoring the need for inclusive and person-centred services in later life.

The research findings will be presented at an event in the Scottish Parliament at Holyrood in Edinburgh on Wednesday, 19 March. Chaired by Daniel Johnson MSP and attended by Minister for Social Care, Mental Wellbeing and Sport, Maree Todd, the event will feature a screening of the documentary and an exhibition of the project’s artworks.

In light of this research, project partners advocate for:

• Timely, multi-agency planning. Ensuring transitions across the lifespan of autistic individuals, including the shift to older age, are well-coordinated.
• Development of supportive tools. Creating resources to help autistic individuals understand forthcoming changes and participate in designing their care as they age.
• Holistic care pathways. Implementing multidisciplinary collaboration to integrate healthcare into familiar and safe environments for autistic individuals.
• Enhanced data and accountability. Improving transparency regarding support provided to older autistic individuals and the outcomes achieved, facilitating the establishment of best practices.

This initiative marks a significant step towards recognising and addressing the unique needs of older autistic adults, ensuring their perspectives shape the services they receive.