My name is Nina Perry, I am 24 years old and have recently commenced my PhD after completing my Honours program in Neuroscience. My Honours research was completed at the Autism Clinic for Translational Research at The University of Sydney, with a focus on addressing ways to effectively support people with neurodevelopmental conditions in clinical settings.
My PhD project will expand on this area of research, with the overarching aim to improve the wellbeing of people living with various health challenges on daily basis. Aside from research, I am also actively involved in the community, being a Weekend Play volunteer at the Sydney Children’s Hospital for the past 4 years. This role has instilled a passion to improve the psychosocial wellbeing of children experiencing range health challenges and also considering the impact of these on families and caregivers.
Both of these experiences has confirmed my commitment and passion to be involved in clinical research that creates real-world, lasting impact that promotes the voices of people in the community.
The overall aim of my PhD project is to examine new approaches to the assessment of functioning in children with neurodevelopmental conditions in order to switch the focus from deficits, to instead draw attention to a person’s capacity in daily life. Currently, features of autism and neurodevelopmental disorders are defined through their symptoms and diagnosis, which have been found to form negative characterisations and identity-forming constructs reflecting an undesirable lack of ‘something’, rather than true human capacities.
This deficit approach unfortunately leaves an individual’s strengths largely ignored. Identification of strengths can lead to individualised care that supports the skills a person already has, of which a greater self-esteem to act independently can arise from. A person’s ability to do everyday tasks is known as ‘adaptive functioning’ or simply, ‘functioning’, which in healthcare settings acknowledges the unique differences found in individuals, rather than a particular deficit they may have. However, the current assessment of functioning in clinical setting is very long, taking up to 40 mins to > 1 hour and still largely focuses on deficits. The proposed research will investigate alternative health-related quality of life (HR-QoL) assessments which assesses daily strengths and takes approximately 10 minutes to complete.
We will compare these to the gold-standard measure of functioning known as The Vineland Adaptive Behaviour Scale (3rd Edition). The outcome of this research will lead to quicker assessments that focuses on strengths, and sees therapeutic interventions implemented sooner, leading to better long-term health outcomes for children.
Supervisors: Professor Adam Guastella, Dr Keilsie Boulton and Professor Ian Hickie.