Behavioural interventions to treat anxiety in adults with autism and moderate to severe intellectual disabilities (BEAMS – ID)

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.