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 have developed a parent therapy called CUES (Coping with Uncertainty in Everyday Situations) and shown that it can help young autistic people function better in everyday life by reducing their fear of uncertainty.

They now plan to test CUES with more families to demonstrate that

  • CUES can be delivered by the NHS with trained therapists
  • anxiety symptoms are still reduced 6 months after therapy
  • young autistic people take part in more social activities
  • parents report better well-being

Explaining the need for this project

Anxiety causes difficulties for almost half of children with autism 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 children with autism.

The research process

The team in Newcastle are running a feasibility study to find out whether CUES works. They also need to find out whether it is acceptable to parents and young people and how it can be made available through the NHS to families that need it.

  • 60 parents of children with autism and some anxiety will be recruited (aged 8 to 16)
  • 30 parents will get 8 weeks of CUES therapy including 2 hours of facilitated group therapy every week
  • 30 parents will get access to enhanced usual service including two (non-CUES) group sessions with other parents

They are also finding out

  • how many young people and their families might need access to CUES through CAMHS (Child and Adult Mental Health Services)
  • whether families who participate in CUES might do better than families who get the usual family therapy (reduction in anxiety symptoms)
  • how young people respond differently to the CUES therapy

How this project is making a difference

Parents consistently tell us they need better support to manage their child’s anxiety.

CUES helps parents learn strategies to use with their child in a range of everyday contexts to help them accept and cope with the uncertainty of everyday life.

By equipping parents with the support and tools they need, CUES may help parents feel more confident and more able to manage everyday situations that previously were stressful and upsetting.

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