Our study is about autistic adults who have moderate to severe intellectual disabilities, and problems with anxiety. There are good therapies for anxiety, but these have not been tried with autistic adults with moderate to severe intellectual disabilities. In order to meet the needs of autistic adults with moderate to severe intellectual disabilities, these therapies need to change.
What we want to do?
Our aims are (1) to work with autistic adults, carers and family members, and professionals to adapt an existing therapy for anxiety disorders that was developed for autistic adults without intellectual disabilities, and (2) to complete a study to try out our therapy and seek feedback from participants and their families. We will also collect information about what sort of therapy people are currently getting, along with testing out some good ways to measure anxiety.
How we plan to do it?
Our study has two parts. In the first part, we will change our existing therapy together with autistic adults with intellectual disabilities, parents, carers and clinicians. This work will be led by an autistic person and members of the research team. We will use something called action research methods and consensus development meetings to change our treatment and figure out the best way to measure anxiety. This means that we will repeatedly spend time with autistic adults with intellectual disabilities, parents, carers and clinicians, working together to make changes to therapy. At the same time, we will do a national survey to find out what treatments or therapies people are getting now. In our second phase, we will try out our therapy with 30 autistic adults with moderate to severe intellectual disabilities. We will also try to interview participants, carers and clinicians about their experiences of doing our study. This will help us work out whether people like the therapy, can use our measures of anxiety, and whether there is anything that we need to change to help people better.
What will we do with the findings?
We will write peer review articles which are published in a journal, which is like a magazine. These are often read by professionals. To make sure many people find out about our study, the National Autistic Society help us tell people about it using their Network Autism and their Your Autism magazine. We will also make a podcast. The National Autistic Society will also tell people about our study using social media and their website, and we will put it on our website. We will have a seminar (like a lecture) with The National Autistic Society and autistic adults will help us. We will also do a talk about our study at the National Autistic Society Professional Conference, and other conferences. If you want to know about our study, just ask us, and we will tell you.
Who will be involved in the study?
We want autistic adults with moderate to severe intellectual disabilities, carers and family members involved in our study. We are working with the National Autistic Society who will help with this study. They will help prepare our paperwork, find people to be in our study, and tell people about what we find out. We have autistic adults who will be in charge of our study with us and will help us change our therapy.
The study is conducted in collaboration with University of Bristol, Cardiff University, University of Glasgow, University of East Anglia and National Autistic Society.
Who funds the study?
The study is funded by National Institute for Health Research (NIHR) Health Technology Assessment.
BEAMS-ID Study Manager
CEDAR University of Warwick
BEAMS-ID Chief Investigator
CEDAR, University of Warwick
To keep updated with the study, you can view study details on the ISRCTN registry where regular study updates will be published.
Phase 1a – Intervention adaptation group
Phase 1b - Survey of treatment as usual for health and social care professionals
Phase 2 – Modelling study
- Carer Information SheetLink opens in a new window
- Nominated Consultee Information SheetLink opens in a new window
- Participant Information SheetLink opens in a new window
- Personal Consultee Information SheetLink opens in a new window
- Therapist Information SheetLink opens in a new window
Information on the survey of treatment as usual for autistic adults with moderate to severe learning disabilities and anxiety will be added in due course.