My name is Lauren Jenner, and I am a second year PhD student at the Neurodevelopmental Research (NDevR) lab at the University of Surrey. My research is funded by Cerebra, and forms part of the Cerebra Network for Neurodevelopmental Disorders multi-institution research collaboration.
I am researching social abilities and autism among children and young people (4-19-years-old) with Prader-Willi syndrome and Down syndrome. I am particularly interested in how individuals with these syndromes process and understand social information, and whether this relates to strengths/challenges within social interactions and autistic-traits.
For as long as I can remember I have wanted to improve how we understand and support those with neurodevelopmental conditions. As a sibling of someone with an intellectual disability and autism, I noticed from an early age the barriers faced by individuals with different needs and ways of thinking. These experiences led me to study an undergraduate degree in Psychology. Whilst studying, I worked part-time as a Project Worker for a charity, providing one-to-one support for individuals with neurodevelopmental conditions and complex needs.
I then studied a master’s degree in Developmental Psychology, beginning my research journey, using eye-tracking technology to understand how infants with an increased likelihood for autism recognise and respond to facial expressions. I also began working as a Personal Assistant for an individual with Down syndrome and autism – an experience which continues to motivate me today.
After graduating, I worked as an Assistant Psychologist for a neurodevelopmental and intellectual disability service. Working in clinical practice allowed me to see first-hand the challenges associated with diagnosing autism in the context of co-occurring intellectual disability.
About my research
Individuals with genetic syndromes and intellectual disability often score highly on diagnostic tools for autism. However, there is low recognition of autism in clinical practice, partly due to ‘diagnostic overshadowing’. Diagnostic overshadowing is when an individual’s behaviour is assumed to be part of their primary diagnosis, without exploring the possibility of co-occurring conditions. This means that a secondary diagnosis of autism may be overlooked for an individual with a genetic syndrome. In some genetic syndromes, evidence of strengths in social abilities (e.g., prosocial behaviour in Down syndrome) result in an atypical profile when presented alongside other clinically significant autistic-traits – creating a further barrier to receiving a diagnosis.
Research has shown that autistic individuals often demonstrate differences in social processing and understanding. For example, they might find it difficult to follow a person’s gaze to see what they are referring to, or recognise someone else’s belief is different to their own. In my PhD, I aim to identify whether individuals with Prader-Willi syndrome and Down syndrome process and understand social information similarly to autistic individuals (without a genetic syndrome).
Using eye-tracking technology, I record individual’s eye movements whilst they are viewing videos. Measuring where an individual is looking can provide us with insight into how they are processing and understanding social information. For instance, when shown videos of an actor looking towards an object, does the participant follow the actor’s gaze? If an object is moved whilst the actor is turned away, does the participant anticipate the actor will retrieve it from where they saw it last? Using tasks which do not require verbal responses allows us to answer these questions in a way that is accessible and inclusive of those with varied intellectual and language abilities.
I am also interested in how social processing differences in Prader-Willi syndrome and Down syndrome relate to strengths/challenges within social interactions and autistic-traits. Parents of participants complete a background questionnaire and interview, which includes questions about their child’s daily activities, social-communication skills, and autistic-traits. We also record a play-based social interaction between the parent and child, which involves various toys or turn-taking games (e.g., Pop up Pirate, Jenga). By exploring the association between social processing and social behaviour, I hope this work contributes to improved understanding and support for individuals with these syndromes – particularly in relation to co-occurring autistic-traits.
I am currently in the process of collecting data – thank you to all the families who have taken part so far! I look forward to sharing our research findings with you through Cerebra in the future. In the meantime, please feel free to get in touch for further information about the project.
As part of our Research Strategy we are committed to developing the next generation of researchers who will champion the needs of children with neurodevelopmental conditions, particularly those with multiple and complex needs or rare conditions.