Anxiety causes difficulties for almost half of all autistic children. We've funded research at Newcastle University to test a parent-led therapy called CUES© to help families manage uncertainty in everyday life. Their study has shown promising results and they are working to provide CUES© training for clinicians in the UK and beyond.

Autistic children often have an ‘intolerance of uncertainty’ (IU). This plays an important role in how anxiety develops and persists in autistic children and is also a barrier to effective treatment. Even though researchers understand the important role that IU plays, there are no existing therapies that specifically target it in autistic children.

Professor Jacqui Rodgers and her team at the University of Newcastle have developed a parent therapy called CUES© (Coping with Uncertainty in Everyday Situations). They carried out a feasibility study to explore whether CUES© would be able to:

• be delivered by trained NHS therapists,
• find out whether it was acceptable and useful for families and
• if it resulted in a reduction in difficulties with uncertainty in everyday situations.

Who was involved in the study?

Parents of fifty autistic children who experience anxiety were recruited from NHS services and were randomised to receive CUES© or enhanced services as usual. All of the children met the clinical threshold for at least one anxiety disorder.

Of the 26 participants randomised to CUES©, 72% attended 4–8 sessions.

Each session included approximately ten parents and took place weekly for 8 weeks with at home’ activities set out each week for parents and children to complete between sessions.

What did the CUES© sessions do?

The sessions were led by CUES© trained clinicians who helped parents to understand IU and recognise potential developmental and environmental factors that may trigger IU for their child. They gave parents strategies aimed at increasing their child’s ability to cope with uncertainty and shared opportunities for discussion and support.

The aim of the sessions was to increase the child’s ability to cope with everyday uncertainty, reduce negative beliefs about uncertainty and develop a more flexible approach to uncertainty. They also aimed to help parents develop an understanding of uncertainty and its impact, try out strategies and share opportunities for discussion and support.

What did the study show?

Parents finished the programme feeling empowered and confident, and many were sad when the study ended. They showed an improved ability to identify and manage their child’s IU and saw a change in their child’s response to anxiety provoking situations. Therapists taking part in the trial all reported that they would like to integrate CUES© into their practice.

Next steps

Professor Rodgers and her team have already taken steps to implement CUES© nationally and internationally:

• Training on how to deliver CUES© has been rolled out to the NHS and education professionals, with over 100 clinicians now trained nationally in a range of settings. More training is planned for clinicians in Australia.
• The Wellcome Trust Translational Explorer has funded CUES© for development in schools, a project which has included consultation with autistic young people, parents and educational staff about content and format of the programme.
• Professor Rodgers and her team are working with colleagues in Perth Australia to adapt CUES© for parents of younger autistic children aged 3-6 years, along with developing a digital version of CUES© starting in August 2022.
• CUES© is currently being translated into Spanish so it can be implemented South America in autumn 2022.