Study overview

Addressing intolerance of uncertainty in children with autism spectrum disorder: An intervention feasibility trial

Anxiety causes difficulties for around 50% of children with autism spectrum disorder (ASD); childhood anxiety is a major risk factor for anxiety in adulthood. Our research shows that uncertain situations can be difficult for autistic people to tolerate, this is called Intolerance of Uncertainty (IU). People who experience IU believe that uncertainty is stressful and upsetting and should be avoided. IU has an important role in the development and maintenance of anxiety and is a barrier to effective anxiety treatment. Despite this, until now there have been no existing therapies that target IU for children with ASD. In a previous study, we worked with parents to develop a parent-based intervention to assist children with ASD to manage uncertain situations more effectively. The intervention is called Coping with Uncertainty in Everyday Situations (CUES^©).  CUES^© is designed to be delivered to parents of young people with ASD in a small group setting. Parents are asked to attend eight two-hour sessions. During the sessions therapists support parents to develop strategies to assist their child to be able to tolerate uncertainty in everyday situations. Parents learn to identify when their child is showing anxiety related to uncertainty and to practice strategies to enable them to tolerate uncertainty. We are continuing to evaluate CUES^© and in the current study we wish to recruit sixty parents of children with ASD and anxiety from NHS services. These families will be allocated by chance to either receive CUES^© or attend two sessions of a parent group which focuses on learning about autism. The CUES^© group will be run by trained NHS therapists. We will meet with families individually at the start to gather information about their child's IU and anxiety. Parents receiving CUES^© will attend the eight-week programme alongside other parents. We will ask parents from the intervention groups to identify a target situation that involves uncertainty to enable them to practise strategies with their child. We will meet with the families individually at the end of the programme and a few months later to find out whether they think that  CUES^©  is acceptable and helpful.

Who is involved in this study?

The Principal Investigator for this study is Dr Jacqui Rodgers.

‌Dr Jacqui Rodgers

Senior Lecturer in Clinical Psychology

Doctorate in Clinical Psychology

Email: jacqui.rodgers@ncl.ac.uk

Tel: 0191 208 7562

Studies: Identifying Targets to Prevent Suicide in Autism; Managing Anxiety in Williams Syndrome;  Uncertain Futures; PAT-A

Recently Completed Studies: CUES; MeASURe; Measuring Anxiety in ASD; WHOQOL-BREF and Autistic Adults

Also involved in the project from the Neurodevelopment and Disability team are:

Jeremy Parr

Clinical Senior Lecturer

Honorary Consultant Paediatrician, Newcastle upon Tyne Hospitals NHS Foundation Trust

Jane Goodwin

Research Associate

 Also involved from outside the team are:

Professor Mark Freeston (Professor of Clinical Psychology, Newcastle University)

Dr Vicki Grahame (Consultant clinical psychologist and clinical lead CNDS, Northumberland Tyne and Wear NHS Foundation Trust)

Dr Catharine Wright (Principal clinical psychologist CAMHS, Northumbria NHS Foundations Trust)

Dr Kerry Shields (Clinical psychologist CAMHS, Northumbria NHS Foundations Trust)

Mr John Padget (Service Manager, Children and Young Peoples Inpatient and Regional Services CAMHS, Northumberland Tyne and Wear NHS Foundation Trust)

Mrs Deborah Garland (Parent support officer/advisor National Autistic Society & Complex Neurodevelopmental Disorders Service, Northumberland Tyne and Wear NHS Foundation Trust)

Mr Malcolm Osborne (Chair of The Kayaks Support Group [Special Educational Needs/Disability] Service user support group. Autistic adult and parent of autistic adolescent)

More information

We’d love to hear from you! Please do contact us if you are interested in this research:

Email: cues.study@ncl.ac.uk
Twitter: @CUESstudy
Facebook: https://www.facebook.com/CUESstudy/

Other research

The CUES study sits within the ‘ASD' and the ‘Mental Health' research themes. If you are looking for other research linked to these research themes, please view the relevant conditions and topics page for a full list of studies.