Ageing, Health, and Social Care: The meaningful engagement of autistic people with learning disabilities in supported living services in Scotland
Lead Research Organisation:
Heriot-Watt University
Department Name: Sch of Social Sciences
Abstract
Older autistic people with learning disabilities are not having their human rights met. There are inequalities in health and social care provision. Autistic people with learning disabilities are rarely involved with the design of services, but rather, services which are designed for non-autistic people are offered.
Autistic people are increasingly using a range of media to have their views heard. There is a growing movement which rejects the medical/deficit model of autism, a model which suggests that the autistic person requires 'fixing' or 'training' to meet the 'typical' norm. This can lead to the autistic person being labelled as abnormal, stigmatised, and potentially excluded from society. Models are evolving such as human rights-based models focusing on inclusive practices and understanding the lived experience of the autistic person to design and develop services.
Human rights implementation is a process and does not occur overnight. Part of that process will be to ensure that autistic people with learning disability are part of the decision-making process regarding service provision as they age and their lived experiences can direct and shape health and social care so that they can age well.
The project aims to use film and art to support autistic people with learning disabilities direct the discussion in relation to planning and designing care provision as they age. By using these creative methods, we aim to support autistic people with learning disabilities to direct a discussion around what happy and health ageing looks like for them, to understand the impact of these discussions on others, and to raise awareness and support discussion with providers and the wider public.
The project will have three main activities. The first will be to create a documentary film which will be led by a team of autistic filmmakers. Autistic people with learning disabilities (aged 55+) will be interviewed by the autistic interviewer on the experience of ageing in supported living services. Adapted and individualised interview methods will be used, allowing for a focus on visual cues and alternative means of communication.
The second activity will involve showing the film within supported workshops. One will be online, and one will be face to face. The film will be used to help initiate a dialogue around ageing, aspirations, concerns, and care provision for older autistic adults in supported living arrangements. Autistic adults with learning disabilities and care providers will be asked to contribute. There will be a "wall" /canvas similar to a graffiti wall upon which participants can add to the dialogue. Participants can contribute directly to the "wall" themselves or can be supported to contribute by an artist. To allow all contributors time to process the discussions, there will be the facility to send in contributions after the event (e.g. by sending in a comment, photograph, or drawing). These will be collated by the research team, and the artist will add these to the visual record.
The third activity will involve sharing the film and artwork across Scotland in a range of venues both online and in person with service providers, policy makers and the wider public.
We aim to understand the impact of engaging with the project and the activities on communities through a process of monitoring and evaluation. For instance, service providers and policy makers may desire to adapt their services and service provision, and the wider public may become more aware, and knowledgeable about older autistic people with learning disabilities and their aspirations for ageing well.
We will communicate the findings of the project through the documentary film, the artwork, as well as a film which will document the process of creating the documentary film (like an "out-takes" film). We will produce academic journal articles and present the findings to relevant communities including academic, health and social care, and policy makers.
Autistic people are increasingly using a range of media to have their views heard. There is a growing movement which rejects the medical/deficit model of autism, a model which suggests that the autistic person requires 'fixing' or 'training' to meet the 'typical' norm. This can lead to the autistic person being labelled as abnormal, stigmatised, and potentially excluded from society. Models are evolving such as human rights-based models focusing on inclusive practices and understanding the lived experience of the autistic person to design and develop services.
Human rights implementation is a process and does not occur overnight. Part of that process will be to ensure that autistic people with learning disability are part of the decision-making process regarding service provision as they age and their lived experiences can direct and shape health and social care so that they can age well.
The project aims to use film and art to support autistic people with learning disabilities direct the discussion in relation to planning and designing care provision as they age. By using these creative methods, we aim to support autistic people with learning disabilities to direct a discussion around what happy and health ageing looks like for them, to understand the impact of these discussions on others, and to raise awareness and support discussion with providers and the wider public.
The project will have three main activities. The first will be to create a documentary film which will be led by a team of autistic filmmakers. Autistic people with learning disabilities (aged 55+) will be interviewed by the autistic interviewer on the experience of ageing in supported living services. Adapted and individualised interview methods will be used, allowing for a focus on visual cues and alternative means of communication.
The second activity will involve showing the film within supported workshops. One will be online, and one will be face to face. The film will be used to help initiate a dialogue around ageing, aspirations, concerns, and care provision for older autistic adults in supported living arrangements. Autistic adults with learning disabilities and care providers will be asked to contribute. There will be a "wall" /canvas similar to a graffiti wall upon which participants can add to the dialogue. Participants can contribute directly to the "wall" themselves or can be supported to contribute by an artist. To allow all contributors time to process the discussions, there will be the facility to send in contributions after the event (e.g. by sending in a comment, photograph, or drawing). These will be collated by the research team, and the artist will add these to the visual record.
The third activity will involve sharing the film and artwork across Scotland in a range of venues both online and in person with service providers, policy makers and the wider public.
We aim to understand the impact of engaging with the project and the activities on communities through a process of monitoring and evaluation. For instance, service providers and policy makers may desire to adapt their services and service provision, and the wider public may become more aware, and knowledgeable about older autistic people with learning disabilities and their aspirations for ageing well.
We will communicate the findings of the project through the documentary film, the artwork, as well as a film which will document the process of creating the documentary film (like an "out-takes" film). We will produce academic journal articles and present the findings to relevant communities including academic, health and social care, and policy makers.
Organisations
Title | Beginning the conversation |
Description | We have developed documentary films with autistic people with learning disabilities (aged 55+) interviewed by an autistic interviewer on the experience of ageing in supported living services. We have two films one which captures visions of ageing and support from older autistic people, and a second which captures the making of the film. The documentary film was shown within 3 supported workshops 1) older autistic people with learning disabilities, 2) older autistic people without learning disabilities, 3) health and social care professionals. The film was used to help initiate a dialogue around ageing, aspirations, concerns, and care provision for older autistic adults in supported living arrangements. The films and associated artworks were then shown in a number of public engagement events, and conferences. |
Type Of Art | Artistic/Creative Exhibition |
Year Produced | 2024 |
Impact | Similar to the artworks. The films raise awareness of ageing with older autistic people, of challenges concerning change and loss, and what healthy ageing might look like. These help support conversations around health and ageing. |
Title | Co-designing Care in Safer Spaces |
Description | This describes how to work with people and how to create a safer space in which to co-design care. We have developed this in this research project and we are using it in our NIHR equipping social workers project and in our NIHR Participatory Systems Mapping with Underserved Autistic Adults: Co-Designing Health and Social Care Solutions Through Creative Arts |
Type Of Art | Artwork |
Year Produced | 2024 |
Impact | It has influenced how we set up our research projects from start to finish and what we are recommending in our policy documents |
Title | Designing the future of health and care with older autistic people |
Description | We have three artworks that we developed as part of the project, These captured visions of ageing and support with older autistic people without learning disabilities, with learning disabilities, and health and social care professionals. |
Type Of Art | Artwork |
Year Produced | 2024 |
Impact | We have presented these at Scottish Autism, at a public engagement event, and at the Healthy Ageing Showcase at Heriot Watt University. A young autistic woman and her mother came to the Curious event and they noted that the posters helped them start the conversation around ageing. Professionals at the events noted that they could see the value of doing research in this way to fully capture a range of perspectives from people who were seldom involved in design. In addition all noted the clarity of expression and ease of access from using the visuals |
Description | These are early findings and themes. During both completing the documentary film and our first workshop with carers and professionals we found that community based approaches are essential. |
Exploitation Route | The project is still ongoing and outcomes will be taken forward in due course |
Sectors | Communities and Social Services/Policy Education Healthcare Government Democracy and Justice |
Description | They are being used to raise awareness regarding meaningful engagement when working with autistic people and the need to focus on older people. Other impacts are emerging |
First Year Of Impact | 2023 |
Description | Participatory Systems Mapping with Underserved Autistic Adults: Co-Designing Health and Social Care Solutions Through Creative Arts |
Amount | £148,622 (GBP) |
Funding ID | NIHR207081 |
Organisation | National Institute for Health Research |
Sector | Public |
Country | United Kingdom |
Start | 02/2025 |
End | 01/2026 |
Description | Afternoon of Good Practices -Ageing. Autism Europe |
Form Of Engagement Activity | A formal working group, expert panel or dialogue |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | The Afternoon of Good Practices are informal networking and information exchange sessions organised bi-monthly online for Autism Europe members and partners to promote mutual learning. |
Year(s) Of Engagement Activity | 2024 |
Description | British Association of Social Workers - Social Work with Older People Group Presentation |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | The British Association of Social Workers - Social Work with Older People Group invited the research team to present on the COAST research project and to speak generally about autism among older people. The aim was to increase awareness of the training that has been codesigned, promote participation in the evaluation, and raise awareness of the needs of older autistic people. Participants were social workers working with older people, other related professionals, and members of the public acting as advisors with lived experience to the Group. The presentation raised questions and discussion, however time was limited and we will re-visit the group for a more in depth discussion. |
Year(s) Of Engagement Activity | 2025 |
Description | Heriot-Watt's Healthy Ageing Showcase |
Form Of Engagement Activity | Participation in an open day or visit at my research institution |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Third sector organisations |
Results and Impact | The Healthy Ageing Showcase offers an opportunity to hear from the people leading and participating in a range of research projects. These include developing and trialling new and innovative technologies that support and enhance healthy lifestyles, to the ways our homes and urban environments can be designed to encourage opportunities for healthy ageing, to robotic and assistive devices enabling people with different needs to live independently for longer. The event will be opened by Professor Linda Bauld (Chief Social Policy Advisor to the Scottish Government), followed by researchers representing the breadth and depth of activities in healthy ageing at Heriot-Watt. The event will also include a special session led by Katherine Crawford (Chief Executive Officer of Age Scotland) celebrating the involvement of people in shaping research. |
Year(s) Of Engagement Activity | 2024 |
URL | https://cabs.site.hw.ac.uk/event/heriot-watts-healthy-ageing-showcase/#:~:text=Join%20us%20on%20Wedn... |
Description | Inaugural impact lecture |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Other audiences |
Results and Impact | It is part of the inaugural impact series to which partners and interested parties are invited. There are three speakers and the session is chaired by an experienced media expert. The event is professionally filmed and posted online to enhance engagement. People can attend live - in person or online and/or they can watch the recording. The event is publicised through social media, email and other means. Audience members asked questions about the research and changed their understanding of what meaningful participation was and how to undertake it as well as having a greater understanding of lifecourse inequalities for autistic people |
Year(s) Of Engagement Activity | 2024 |
URL | https://www.youtube.com/@hwulectures9389/videos |
Description | Parliamentary motion - Scotland |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Policymakers/politicians |
Results and Impact | Parliamentary motion Autism and Ageing Project by Heriot-Watt University and Scottish Autism Submitted by: Daniel Johnson, Edinburgh Southern, Scottish Labour. Date lodged: Wednesday, 20 September 2023 Motion reference: S6M-10504 That the Parliament welcomes the launch of a new project by Heriot-Watt University and Scottish Autism, which seeks to better understand the experience of older autistic people with learning disabilities; understands that the project has been funded by the Arts and Humanities Research Council and will involve the use of film-making and art to help explore the experiences and hopes of older autistic adults; notes that Iceberg Productions, a group of autistic filmmakers supported by the Untold Motion Picture Company, will interview a number of older autistic adults, and that this film will be shown at workshops where artists will support the creation of a collective artwork that will express the hopes and aspirations for the future health and care of older autistic people; considers that this is an exciting and unique venture, which will help highlight the experiences of a section of society whose views are not, it believes, often included in service design, and looks forward to the results of the project being shared following its conclusion in March 2024. Supported by: Karen Adam, Jeremy Balfour, Colin Beattie, Sarah Boyack, Miles Briggs, Alexander Burnett, Maggie Chapman, Foysol Choudhury, Kenneth Gibson, Pam Gosal, Dr. Sandesh Gulhane, Bill Kidd, Stuart McMillan, Paul O'Kane, Alexander Stewart, Kevin Stewart, Paul Sweeney, Sue Webber, Tess White |
Year(s) Of Engagement Activity | 2023 |
URL | https://www.parliament.scot/chamber-and-committees/votes-and-motions/votes-and-motions-search/S6M-10... |
Description | Presentation about COAST study and training package we are co-producing at an away half-day for team managers from Southwark Council - one of the Local Authorities linked with Goldsmith's university. |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Professional Practitioners |
Results and Impact | We were invited to present our research to at the away half day of Southwark council. We discussed the rate of diagnosis for older autistic people, underlining the notion that the majority of older autistic people engaging with social services will not have a diagnosis and discussing the implications for their practice. We talked about the training package we have been co-producing with our community researchers and invited comments and questions. We wanted to put older autistic people on their radar and engage the team managers with our project to increase their awareness of the intersection of ageism and stigma around being autistic. The audience were engaged, asked lots of questions and were keen to hear more - particularly once the first iteration of the training package was ready. This will have sown the seed for the dissemination of the training package further down the line. |
Year(s) Of Engagement Activity | 2024 |
Description | Press release |
Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Media (as a channel to the public) |
Results and Impact | Press release from our institution which was then highlighted to other press outlets Twitter post here https://twitter.com/HWUNews/status/1694274122124042534 which has 2,476 Views - has been reposted and reposted again then viewed by multiple others It was picked up here by Arts Professional in a news items https://www.artsprofessional.co.uk/news/newsreel/scottish-project-explores-experiences-autistic-adults and by the TFN the voice of Scotland voluntary sector in a news item https://tfn.scot/news/groundbreaking-arts-partnership-between-heriot-watt-and-scottish-autism and here in a local press news item https://www.alloaadvertiser.com/news/23742057.scottish-autism-head-documentary-older-autistic-adults/ It has also received attention from other researchers and I have been invited to discuss the project with other researchers and discuss the methods. The project has influenced people's views on what meaningful participation is and how to conduct studies and on ageing, learning disability and autism |
Year(s) Of Engagement Activity | 2023 |
URL | https://www.hw.ac.uk/news/articles/2023/groundbreaking-arts-project-looks-to-improve.htm |
Description | Royal Society of Edinburgh Curious Festival |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Public/other audiences |
Results and Impact | he future of health and care in Scotland concerns everyone. Yet, there remains a significant gap in opportunities for people from marginalised groups to participate in crucial conversations that shape service provision. How can we effectively capture the views and opinions of under-represented communities on health services, social care, and ageing-related needs? What are the best strategies for health and care providers to engage these groups in discussions about ageing, health, and care? In this event, we will explore creative means of engaging seldom listened-to voices in discussions about health and care provision for older people. The speakers will share a collaborative project that has engaged filmmaking and artwork to harness the voices and concerns of autistic adults who have learning disabilities. We will show a compelling short documentary film made by Iceberg Productions - a team of autistic filmmakers supported by Scottish Autism. We will also share artwork collated by Clare Mills of ListenThinkDraw that captures our conversations with supported autistic people and professionals about their visions and aspirations for support in older age. This event aims to spark meaningful discussions about inclusive health and social care between researchers, health and care providers, and people with lived experience. |
Year(s) Of Engagement Activity | 2024 |
URL | https://rse.org.uk/event/envisioning-inclusive-care-the-future-of-health-and-care-for-autistic-adult... |
Description | Scottish Autism Annual Conference |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Presenting our research to practitioners to raise awareness of issues regarding older age and to gain feedback on our work |
Year(s) Of Engagement Activity | 2024 |
Description | Scottish Autism's Centre for Practice, Policy and Research Launch Event |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | The event was to relaunch the work that Scottish Autism does with practice, policy and research. It was to highlight the breadth of work carried out to partners |
Year(s) Of Engagement Activity | 2025 |
URL | https://www.instagram.com/scottishautism/p/DGvpJ_8uAA7/?img_index=1 |
Description | Social media, webpage and social media posts |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Third sector organisations |
Results and Impact | We have a webpage where the project is advertised. It gives details about the project to highlight 1) the research that we are doing and to ask for people to note their interest in receiving updates about the project, 2) to recruit people to the workshops and events related to the project, 3) to raise awareness of the issues that face older autistic people and to highlight their strengths and capabilities. We have also used Lindedin and X as well as directly contacting networks. The main aim was to involve people in the research but also to raise the profile of what we are doing and how older autistic people are meaningfully involved and directing research. |
Year(s) Of Engagement Activity | 2023 |
URL | https://simhw.hw.ac.uk/projects/ahsc/ |
Description | Talk to Girona Meeting on Autism across Adulthood |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Presentation to a conference on autism and adulthood, attended by clinical practitioners, members of the public and postgraduate students. Increased awareness of the importance of lifespan issues and ageing for autistic people and sparked discussion and questions about knowledge available to date. |
Year(s) Of Engagement Activity | 2023 |
Description | Webinar to researchers, practitioners and members of the public |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Other audiences |
Results and Impact | Webinar to the KIND seminar series in Sven Bolte's lab in Sweden about lifecourse inequalities with autistic people and meaningful engagement People asked questions and the talk raised knowledge about lifecourse inequalities in autistic people |
Year(s) Of Engagement Activity | 2023 |