Background
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. As autistic people get older, they may suffer increasingly with poor health and as a result may transition to residential care.
Why did we do this study?
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. With this study we wanted to learn more about standard and suitability of existing care for older autistic adults.
What did we do?
We worked with a multi-expert group to refine research questions regarding the current use of residential facilities by older autistic adults. The group included older autistic adults, the immediate family members of older autistic adults (siblings and children), service providers, clinicians, and researchers based in the United Kingdom. We worked together to build the necessary tools to make future research in this area achievable.
What did we find?
Together with the multi-expert group, we identified 10 key topics:
- supporting transitions to residential care,
- training for staff
- recognising and understanding autistic differences
- supporting physical health
- adapting the sensory environment
- adhering to autism design principles
- creating community and belonging
- promoting autonomy and choice
- supporting advocacy
- evaluating care quality
We also created a new interview tool, the Autistic Satisfaction with Care Holistic Interview (ASCHI),
to find out more about what residential care is like for older autistic adults, and which areas of services are not meeting their needs.
Outputs
You can read more about the project on this page.
You can access our new ASCHI tool here on this page.
We have created several accessible summaries of this project:
- A flyer with information for services on how to improve residential care for older autistic adults
- A database of residential care services to facilitate future research
We have also discussed this study with the Scottish Autism Share Magazine, who wrote an article about why it is important to research the best way to support older autistic adults in residential care services.
The findings from this research have been published in a peer-reviewed journal, and are available at:
- Crompton, C. J., Michael, C., Dawson, M., & Fletcher-watson, S.(2020). Residential Care for Older Autistic Adults: Insights from Three Multiexpert Summits. Autism in Adulthood. 2(2) 121-127.
- Crompton, C., Cos, M., & Fletcher-Watson, S.(2019). Co-creating the Autistic Satisfaction with Care Holistic Interview (ASCHI) to examine the experiences of older autistic adults in residential care. Autism in Adulthood. 2(1), 77-86.
If you want to know more about autism and aging, you can find here a video of a public lecture on the topic given by Professor Hilde Geurts at the University of Edinburgh in October 2018.
Who conducted and funded the project?
This project was conducted by Catherine Crompton, Cos Michael, and Sue Fletcher-Watson, with the help of Michael Dawson and Anna Gilleard. The study was funded by Autistica.
