Ageing & Residential Care

We are coming to the end of a project designed to explore the suitability of existing residential care for older autistic adults, and to develop tools and guidance for future research in this area.

In 2018, Autistica held a summit to establish priority research areas to improve the physical health and wellbeing of autistic people, enabling them to live longer, happier, healthier lives. We believe that the environment and quality of care at home is a basic requirement for good quality of life for autistic adults in later life who can no longer manage to live independently. The standard and suitability of existing care for older autistic adults has not yet been explored by researchers.

In this project, we worked with a multi-expert group to refine research questions relating to the current use of residential facilities by older autistic adults. We worked together to build the necessary tools to make future research in this area achievable.

Outputs

• An open access paper describing the views of a multi-expert group on the future of research and practice for residential care services for older autistic adults.
• A new open access research tool: the Autistic Satisfaction with Care Holistic Interview (ASCHI)
• An open access paper describing the community-led development of the ASCHI
• Information for services on how to improve residential care for older autistic adults
• A database of residential care services to facilitate future research
• Raising awareness through sharing ideas: An article for the Scottish Autism Share Magazine about why it’s important to build an evidence base to support older autistic adults in residential care services.
• A public lecture: Professor Hilde Geurts on autism and ageing.

Best practice in autism research features equal partnerships between academics and autistic community representatives. This is reflected in our research approach. Autistic people have, and will continue to be, involved at every stage of the design and implementation of this research. The project was co-developed by co-applicant Cos Michael, and our research team includes consultant Michael Dawson.

Our multi expert group included family members to offer their perspectives as people closely involved with the care and support of elderly autistic relatives.

Our ASCHI interview was designed using a Dephi methodology. This meant that the project team worked closely with a group of experts to design a set of interviews by asking them to generate priority areas, example questions, and then shape the development of interviews to find out more about what residential care is like for older autistic adults. This group of experts included older autistic adults, the family members of older autistic adults, service providers, researchers, and clinicians.

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