Research projects

Coping with uncertainty

Coping with uncertainty in everyday situations (CUES©) to address intolerance of uncertainty in autistic children: an intervention feasibility trial

Mental Health Proven treatments for anxiety

Anxiety can cause autistic people to react negatively to new situations or events because they can’t predict what’s going to happen. This ‘intolerance of uncertainty’ can affect their thoughts, feelings and behaviour.

Some autistic people find uncertainty so stressful and upsetting that they do everything to avoid it, for example refusing school or going to social events.

Jacqui Rogers and her team have worked with parents of young autistic people to find ways to help them tackle uncertainty in their everyday lives.

They carried out a feasibility study to explore whether a parent therapy called CUES© (Coping with Uncertainty in Everyday Situations) 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.

Explaining the need for this project

Anxiety causes difficulties for almost half of autistic children and most of them will continue to struggle with anxiety into adulthood. Intolerance of uncertainty (IU) 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.

The research process

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 four to eight sessions. Each session included approximately 10 parents and took place weekly for eight weeks with at home’ activities set out each week for parents and children to complete between sessions.

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.

The study was a feasibility study and CUES© needs to now be evaluated in a definitive trial.

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.

This research is supported by businessman and autism philanthropist Charles Sharland.