Many autistic adults live in supported living but there is hardly any research to understand their experiences or what we can do to improve their standard of living. A team of researchers at the University of Edinburgh worked with autistic adults and professionals to create a list of research questions and other tools that would kickstart studies.

Doing this groundwork will help researchers to carry out more research in this overlooked area.

The need

It is important to feel safe, happy and supported at home. We need to make sure autistic adults who cannot live independently, get the best possible care. After all, there are more autistic adults than children, and many are now reaching old age. We will only know how to give good care if we ask them and their carers. By understanding their experiences we can start to build a picture of what works and what doesn't, and where more research is needed. Research in this area is severely underfunded, but by laying this groundwork researchers will have more chance of securing funding in future.

The research process

The team went through three steps to create a list of research questions and other tools:

  1. Held three half-day meetings bringing together project consultants with varied backgrounds; autistic adults, ageing and autism researchers and clinicians, old age psychiatrists, and service providers. The meetings were written up as a report, journal article, and were shared as graphics with the community.
  2. Co-designed interview and survey questions about autistic experiences of residential care for the elderly. These questions can be used in future research.
  3. Built a database of recruitment partners for future studies including elder care providers, old-age psychiatrists, and autism organisations.

How is this making a difference?

It is difficult to get new research areas off the ground. By creating a list of research questions and a network of people who have an interest in older adult care, more researchers are likely to move into this area. Also, funders are more likely to give money to research projects in this area if they can see that work has been done to understand the topic. With more research in this area, we can start to improve elder care for autistic people so that their later life is long, happy and healthy.

Catherine explains the project and her findings.

For project updates, visit the University of Edinburgh's Ageing and Residential Care project page.