Title: Behavioural interventions to treat anxiety in adults with autism and moderate to severe intellectual disabilities (BEAMS – ID)
Funder: Department of Health and Social Care

Abstract: Background: 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. _x000D_ Aims: (a) we will 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 (b) 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. Method: 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. Patient and Public Involvement: 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. Dissemination: 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.

Lay abstract: Background: A large number of people with autism and intellectual disabilities have problems with anxiety. There is good evidence that talking psychological therapies are an effective treatment for anxiety, but many of these treatments have not been tested for use with people who have both autism and intellectual disabilities. These treatments need to be adapted before they can be used with this population because of their difficulties with verbal communication, restricted and repetitive behaviours and challenging behaviour. Aims: (a) using co-production with our Patient and Public Involvement (PPI) partners, we will adapt an existing manual for the treatment of anxiety disorders amongst people with autism and intellectual disabilities, and (b) complete a feasibility study to try out our intervention and seek feedback from participants and their families. In addition, we will collect information about what treatment people are currently receiving to effectively describe current Treatment-as-Usual (TAU) and test out some outcome measures. Method: Our study has two phases. In our first phase, we will adapt an existing treatment manual using co-production with our PPI partners, inclusive of service users, carers and clinicians. This work will be jointly led with a service user with autism and members of the research team. We will use action research methods and consensus development meetings to both adapt our intervention and appraise several candidate outcome measures that can be used within our feasibility study. At the same time, we will characterise TAU by completing a national survey of services, structured using the Template for Intervention Description and Replication (TIDieR) checklist. In our second phase, we will complete a feasibility study of our manualised intervention with 30 patients who will receive the intervention plus treatment as usual (TAU). We will interview participants, carers and clinicians about their experiences of taking part in this study. This will allow us to understand the acceptability and experience of receiving intervention, along with the suitability of outcome measures and factors that may hinder or facilitate the research. Patient and Public Involvement: PPI is firmly and genuinely an integral part of our methodology. We have partnered with the National Autistic Society who will work with us collaboratively to use co-production to adapt our intervention. At the same time, they will also help us prepare our study documentation, recruit participants, and collaboratively disseminate information about our study and findings. Service users, carers, and clinicians will sit on our Study Steering Group and have shared oversight of the progress of this project, while also helping lead the development of the intervention. The treatment manual to be adapted was already developed with PPI input. Dissemination: In addition to publishing peer review articles, we will work with the National Autistic Society to maximise dissemination. This will include publishing a Network Autism and Your Autism magazine and podcast. The National Autistic Society will share information about our study and our findings with carers and stakeholders through social media and their website. We will also share information about our study and findings on our own websites. The National Autistic Society will host a seminar about our work which will be delivered jointly with PPI members, and we will deliver a talk at the National Autistic Society Professional Conference, while also disseminating our findings at other international conferences.

Research activity codes: 5.6 PSYCHOLOGICAL AND BEHAVIOURAL;6.6 PSYCHOLOGICAL AND BEHAVIOURAL
Health categories: MENTAL HEALTH