We are currently launching a new project to explore the suitability of existing residential care for older autistic adults, and to develop tools and guidance for future research in this area.
This page is under construction, and we will add new content as it is created.
Last year, 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.
This project involves working with a multi-expert group to refine research questions relating to the current use of residential facilities by older autistic adults. We will work together to build the necessary tools to make future research in this area achievable. This will include
- a report to share with practitioners and services on how to merge best practice in elder care with autistic requirements
- an interview to explore the experience of being an autistic person in residential care for the elderly
- a database of recruitment pathways for future studies, to help us find the people who would like to take part in this research in the future.
We will have an open meeting in early 2018 to allow for wide community input. We will be able to offer small travel bursaries to increase opportunities to join us and share your views. We will have more details on the site nearer the time. If you would like to be alerted when these details become available, please email Catherine.
As part of this project, Professor Hilde Geurts (University of Amsterdam) gave a special public lecture at the University of Edinburgh, entitled “Older and Wiser? The impact of aging when you are autistic”. You can watch a recording of this lecture below.
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 includes family members to offer their perspectives as people closely involved with the care and support of elderly autistic relatives.
Our survey will be designed using a Dephi study. This means that the project team create a set of ideas and first draft together, and then we send it to some experts for feedback. We then take your feedback on board, re-jig and redesign it, and then send it back to the experts for a second round of feedback. We then take your final feedback on board for the final version of the survey. We’re looking for autistic people who’d like to be experts to give us feedback on the survey, likely in early 2019. If you’d like to be involved, please email Catherine.
We’ll also be hosting an open meeting in January 2019 to get wider community feedback on our project. If you’d like to be put on the mailing list for this, please get in touch.
More coming soon!
There are a few ways to get involved
- You can nominate yourself to be an “expert reviewer” for our Delphi study to design an interview
- You can nominate yourself to come to our open meeting in January to discuss ageing and residential care
- You can help us build a network of services and people to help us identify people in the future who may want to take part in research sharing their experiences of being an older autistic adult in residential care
- You can join our mailing list to hear about our project updates and findings
If you’d like to be involved, please get in touch by emailing Catherine at firstname.lastname@example.org