Full project information:
Autistic people with learning disability are often poorly served by health and social care services (e.g. All Party Parliamentary Group on Autism, 2019). We expect health and social care providers to guarantee autistic people with a learning disability the choices, dignity, independence, and good access to services that most people take for granted, however, how can that be possible if autistic people with learning disability have not been part of service design. Co-design work is ongoing, for instance regarding how to best enable staff to better support autistic people and people with learning disabilities (e.g. Oliver McGowan Mandatory Training) and how access to primary care, such as co-design of health checks with autistic adults (Taylor et al., 2022). Research such as this is important in supporting autistic people within the current service. However, autistic people with learning disabilities are rarely at the forefront of developing service provision and advancements, and rarely have meaningful input into designing the services they receive. There can be a focus on those who are verbally articulate and digitally included.
Autistic people, including many with learning disabilities, are increasingly using social media and other technologies to have their views heard and challenge assumptions by service providers about their needs and preferences. However, older autistic people with learning disabilities can find themselves doubly disenfranchised: long marginalized by society, their views are rarely heard by those at the forefront of service design, while the rapid pace of technological developments is known to have further excluded many older autistic people, not least due to issues of access and affordability. The human rights of autistic people are therefore not being met. Human rights implementation is a process. Autistic people with learning disability have the right to access services so that they can age well.
This study:
The proposed project will take an interdisciplinary approach to explore ways that autistic people
with learning disabilities in supported living services can direct the discussion around service
provision and produce a vision for health and wellbeing as they age. The project will explore:
i) creative and inclusive methodologies than can be used to involve autistic people with learning
disabilities in planning and designing support as they age;
ii) a substantive vision of what happy and health ageing looks like for this community which will serve to raise awareness and direct discussion with providers and the wider public, as well as inform social and health care provision and enhance access to care.
The objectives are to:
- Engage with autistic people with learning disabilities who live in supported living services
and support them to express their aspirations and concerns in relation to ageing, health, and
social care using creative methods. - Understand the impact that sharing and engaging with the lived experiences of older autistic
people with learning disability has on the team, other autistic people, care providers, and the
wider public. - Raise awareness of autistic people with learning disabilities aspirations and concerns in
relation to ageing, health, and social care, across health and social care sectors and with
the general public. - Identify key issues and views regarding ageing, health and social care from the lived
experience of autistic people with learning disability and care providers expressed through
these creative methods.
The project is centred around three activities:
- A documentary film-making project, led by a team of autistic film-makers on the experience
of ageing in supported living services - Interactive displays supported by practitioners and artists where autistic people with learning
disability and care providers can engage and create a dialogue around ageing, health and
social care provision. - Dissemination, the documentary film, and a film showing the process of engagement, as
well as artwork will be shared across Scotland in a range of venues both online and in
person, and shared with service providers, policy makers, and the wider public.
Discussions will include specialist autism providers, learning disability providers and health and
social care practitioners that support older people. Through bringing these sectors and specialist
services together with researchers and those with lived experience it is hoped that autistic
people with learning disability will meaningfully engage and direct discussions around service
provision with carers, policy makers, and the general public. Ethical consideration will be given
to consent, understanding the impact of sharing interviews and comments, and the power
dynamics and impact on expressing views regarding service providers.
Audiences:
This project aims to reach and engage autistic adults with learning disability living in supported living services in Scotland. The majority of autistic people are adults, with 60-70% estimated to have a learning disability (NHS Information Centre, 2012). While research with autistic people in adulthood is a growing field, the majority of published research is with autistic children, with very little research addressing issues relating to autistic adults and even less research in relation to ageing with autistic adults with learning disability, and very little regarding social and health care provision (e.g. Bibby, 2012, Maguire et al., 2021, Wark et al, 2015). For autistic people the ageing process may be frightening or daunting as their cognition, health, and support needs change. Age-related changes intersect with both autism-related support needs and support needs relating to learning disability.
It is important that autistic people’s views are heard and engaged with; however, autistic people who have a learning disability often remain excluded from research, research policy consultations, and public engagement activities which do not allow for meaningful engagement. Yet with the right adaptations, accommodation of different communication styles, and use of non-verbal media the voices of this population can and should be included in defining the services that support them.
The first generations of autistic people in Scotland to be diagnosed in significant number are now reaching older age. There is therefore an urgent need to ensure that this group can meaningfully engage with support providers, policy makers, and the public so they can meaningfully contribute to the future of health and social care provision. It is important to understand what good support looks like in older age for this population, and how their experiences, views, and vision can better direct policy and provision. Our aim is to co-produce a vision for health and wellbeing in older age that harness the views of autistic people with learning disabilities and identifies the aspirations and concerns that this population may have in relation to ageing and the support that they would wish to receive.
Collaborators:
Third Sector collaborators will be crucial to guiding these conversations and supporting access to this community. Our network will include specialist autism providers, learning disability providers, health and social care practitioners that support older people, and specialist ethnic minority organisations that work with people with learning disabilities. We will work with a film company, The Untold Motion Picture Company and a production company, Iceberg Productions, to produce a documentary film. We will also work with an artist, Clare Mills from Listen Think Draw, to support an artwork which will combine views from autistic people with learning disability with views from service providers around ageing, health and social care provision.
The Untold Motion Picture Company has experience in supporting people to tell their own stories. They have experience in working with organisations such as Alzheimer Scotland, Scottish Autism, Glasgow Film Theatre, 21 Common, Life Changes Trust, New Struan School, Social Work, NHS. The proprietor was a Scottish Social Services Council (SSSC) registered Social Worker (2014-2021), has training in managing personal sensitive data, has sat as a member of the SSSC Fitness to Practice panel, and was Head of Training and Learning at Sense Scotland.
The artist, Clare Mills, Listen Think Draw, has experience in graphic recording, graphic facilitation, illustration and sketch notes, and is experienced in supporting autistic people with learning disability express themselves through art.
Scottish Autism is a key collaborator. Scottish Autism is Scotland’s largest provider of specialist autism services. These include social care services; vocational opportunities and social enterprises; a residential school; a national advice line; post-diagnostic support for children, families and adults; and a One-Stop-Shop in Fife. The organisation campaigns and advocates for better support and service provision for autistic people and their families across Scotland. Scottish Autism’s Centre for Practice Innovation serves as the organisation’s hub for bringing together developments in autism research, policy and practice. The Centre’s research programme has included a programme of participatory research and pioneered inclusive survey methods for autistic people with learning disabilities and diverse communication styles as well as broader work on voice and participation, all of which will be brought to bear and developed
through the proposed project.
The Scottish Commission for People with Learning Disabilities (SCLD) will support recruitment and dissemination activities. SCLD is an independent charitable organisation and partner to the Scottish Government in the delivery of Scotland’s learning disability strategy, The keys to life (2013) and The keys to life Implementation Framework (2019-2021). SCLD is committed to creating an environment in Scotland in which systems and culture are changed to ensure people with learning disabilities have opportunities and are empowered to live the life they want in line with existing human rights conventions. SCLD believes that the discrimination and barriers faced by people with learning disabilities and other
disabled people are not inevitable. These barriers stop people with learning disabilities and
other disabled people being included in society and participating on an equal basis.
We will work with Talat Yaqoob FRSE, who has experience in policy analysis and public participation, social research across equalities issues (particularly women’s equality and anti-racism) and centers an intersectional approach. She will support recruitment to the project and dissemination in the community.
Proposed outputs:
- A documentary film which will raise awareness and information regarding older autistic adults
in supported living arrangements, their aspirations and concerns about ageing, and their
interactions with health and social care. This will help to initiate conversations about ageing,
health, and social care in Scotland with this group. The documentary film will be shared
across our community networks. - A process film. This film will chronicle the meaningful engagement of older autistic adults, it
will show how it can be done, and raise awareness of the techniques used to carry out the
interviews in order to make the documentary film and engage with the service users. The film
will be shared upon request across our networks (WP3). - Artwork which collates service users, carers, and policy makers views regarding Policy and
Practice: A guidance statement to SWE and the BASW that will describe the training that
needs to be implemented into ongoing professional development. The artwork will be in both
digital and physical form. This allows for easy sharing. We will share this through our
connections with the community including through our collaboration with West Lothian
Libraries, care partners, and with the wider community (WP3). - Two Peer reviewed academic publications: 1) key issues in ageing, health and social care
from the lived experience and views of autistic people with learning disability as expressed
through creative media, 2) the impact that sharing and engaging with the lived experiences of
autistic people with learning disability has on the team, autistic people, care providers, and
the wider public - Presentations: Project findings will be presented to the community, as well as at academic
conferences such as the National Autistic Society’s Annual Conference and at the AHRC
Being Human Festival. During the lifespan of the project we expect to present the findings to
the communities involved.
Impact:
In the short-term we expect to:
- Promote the views of older autistic people to be heard by the public, care providers, and policy makers;
- Raise the profile of older autistic people in supported living arrangements and how they can live happy and healthy lives into old age;
- Identify key issues in ageing, health and social care and aspirations of autistic people with learning disability as they age.
In the medium term we expect that sharing experiences of experiences across the two work packages will begin to influence behaviour, and lead to better outcomes. By demonstrating creative methods for engaging with and hearing the lived experience of autistic adults with learning disability as they age, we will raise awareness of methods for engagement. In the longer term there will be an impact on the development of critical conversations between autistic people, care providers, and policy makers regarding care provision, and involving autistic people with learning disability in policy making decisions, and provision of care decisions going forward.
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