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
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 | 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 | 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 | 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 | 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 |