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We want to learn more about social and emotional well-being in children and young people with and without neurodevelopmental conditions. We particularly want to understand behaviour, social functioning, and emotional well-being, as well as support the development of measures suitable for those in non-verbal populations and those with intellectual disability.

In this project we are particularly focused on examining the overlap between anxiety symptoms and autistic-like characteristics in individuals with Cornelia de Lange Syndrome (CdLS). It can be very difficult to tease apart which behaviours are due to anxiety, and which are due to autistic characteristics; especially in those with genetic syndromes as behaviours often overlap. This study will explore the role of anxiety, hypervigilance, and intolerance of uncertainty in children and young people with Cornelia de Lange Syndrome, autistic children and young people, and non-autistic children and young people.

Our research involves fun tasks and activities that demonstrate a person's behaviours and social skills and we also use eye tracking, which involves looking at some photographs of people on a computer. Parents/carers are asked to fill out some questionnaires and complete an interview over the phone. Overall, the whole study takes 2-3 hours to complete and can be conducted over multiple sessions.

This research is funded by the CdLS Foundation UK and Ireland and The Faculty of Medical Health Science at the University of Surrey.

Current Recruitment (Updated January 2024):

We are looking for children and young people with Cornelia de Lange Syndrome aged 5-30 years old to take part, and autistic and non-autistic children and young people aged 5-15 years old. For this study, we are looking for children and young people who speak few or more words. We are happy to travel to visit you in your hometown or you can visit us at the University of Surrey. Families will be entered into a prize draw for a £100 Amazon voucher. If you would like to take part or would like to find out more, please email Beth Jones at b.l.jones@surrey.ac.uk for more information.

Project Team

Beth Jones

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Jo Moss

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