Lauren Jenner, who is a PHD student at the University of Surrey, is looking for children and young people who have Down’s syndrome (ages 4 to 17 years) ( both with and without a diagnosis of Autism Spectrum Condition (ASC) ) to take part in a study. Our chair, Dr Corcoran, had an informal chat with her about the project and why parents might like to be involved that you can watch here.

 

Lauren is researching how children and young people who have genetic syndromes process and understand social information. She aims to identify whether there are social processing differences characteristic of specific syndromes, and how these may relate to the presentation of autism traits.

People who have Down’s syndrome who take part in Lauren’s study will be asked to undertake:

  • Some tasks and activities that demonstrate their social skills, verbal, and non-verbal abilities.
  • Eye-tracking assessments which show the research team where a person is looking on a screen, giving them information about what that person finds interesting.

Parents will be asked to fill out some questionnaires and complete an interview over the phone.

Testing will be carried out remotely wherever possible. Remote testing sessions can be broken down into a number of short test sessions with rest breaks where needed. Overall, the whole study will take approximately 2-3 hours to complete. The research team will try and complete any face-to-face testing within one visit.

There is further information about the study here:

If you would like to take part in this study, have any questions or would like to discuss the study in more detail, please do not hesitate to contact Lauren using: l.jenner@surrey.ac.uk

BACKGROUND

Lauren and her colleagues are interested in how people who have Down’s syndrome process and understand social information such as faces, eyes and emotions.  They would also like to know how social information processing relates to observable social behaviour skills that are central to navigating day to day interactions in people who have Down’s syndrome.

Since some people who have Down’s syndrome also meet the criteria for a diagnosis of ASC, Lauren is interested in whether individuals who have Down’s syndrome with and without ASC process social information in a way that is similar to or different from people who have ASC without a genetic syndrome. Lauren and colleagues hope that this work will lead to improved understanding of the social-cognitive strengths and challenges that are characteristic of individuals who have Down’s syndrome, those with other genetic syndromes associated with intellectual disability and people who have ASC with and without a genetic syndrome.

We asked Lauren how she believes her study may benefit people who have Down’s syndrome and their families:

‘Generating causal models that explain pathways contributing to variable risk for autism and phenotypic heterogeneity among individuals with Down syndrome will support greater precision in assessment and intervention that is informed by syndrome specific profiles.

 

‘Employing measures of social cognition which are accessible for those with intellectual impairment and/or limited language will support inclusion of individuals with Down syndrome in social cognitive research – addressing a current gap in the literature. Together, this research will advance understanding of autism in Down syndrome and help mitigate gaps in clinical services (Reilly et al., 2015, Thurm et al., 2019). Additionally, parents/caregivers can receive a personalised feedback report and/or a summary of the key findings from the study, which may be used to support their child (e.g., when seeking an autism assessment and diagnosis). There will be a clear statement at the top of each personalised feedback report highlighting the report is not a clinical report but results of a research study. Parents/caregivers are always advised to contact their GP or other appropriate professional if they wish to have clinical input.

 

‘In short, this work is imperative for understanding how individuals with Down syndrome process social information and whether this is related to the presentation of autism. It also will advance measurement of social cognition in this population. The ultimate key beneficiaries of the project will be individuals with Down syndrome, their families, and researchers investigating neurodevelopmental conditions.’

OTHER MEMBERS OF THE RESEARCH TEAM

Dr Jo Moss is a researcher and lecturer at the University of Surrey. Through her research, Jo aims to further understand social, emotional and cognitive diversity in individuals with genetic syndromes. Profesor Farran is a psychologist with expertise in children’s spatial abilities and how this relates to mathematics and science competence, and in understanding spatial learning difficulties in individuals with neurodevelopmental disorders.