IOE researchers highlight family needs and relationships at world's largest autism research meeting
8 June 2018
Researchers from UCL Institute of Education's (IOE) Lifespan Learning and Sleep Lab (LiLAS) highlight sibling experiences of autistic children at the International Society for Autism Research (INSAR).
Georgia Pavlopoulou, Research Fellow at the LiLAS Lab, presented work she has been doing using Photovoice, an audio-visual tool which allows participants to document their experiences. Combined with phenomenological methods, it allows a deeper understanding of siblings' everyday lived experience and potential opportunities for wellbeing in the environment of their families, schools and the wider local community.
The study is one of the first which directly involves autistic children in siblinghood research. Much of siblings' research has focused on siblings' adjustment and relies on parental reports. Although researchers have started exploring typically developing siblings' perspectives on their relationships with a brother or sister with autism, there is still a lack of research on the perspective of the child with a diagnosis of autism.
Dr Dagmara Dimitriou, Director of LiLAS, Georgia Pavlopoulou, and two students from the Psychology of Education MSc and Special and Inclusive Education MA who are supervised by IOE PhD candidate Wasmiah Bin Eid also presented their data on sleep, anxiety and school attendance in female autistic teens, and sleep in relation to maternal wellbeing.
In her talk Georgia emphasised the importance of co-producing research with all family members by employing audio-visual, dynamic and community-based methodologies:
"The inclusion of autistic voice is of paramount importance for us to understand family experiences, priorities and needs for all family members and researchers. Our study moves away from an autism deficit perspective to create equitable partnerships between families, schools and wider local community. Eliciting autistic children's views will inform our understanding and promote new empowering supportive interventions to support autistic people and their families navigating through their life. Direct accounts provided by siblings, autistic and no autistic, must become central goal to design proactive empowering interventions by clinicians, communities such as school and other agencies, and by policymakers in relation to both quality improvement and cost containment."
Jon Adams, autistic freelance artist, campaigner and Research Fellow at the University of Portsmouth, wrote:
"The exclusion of the autistic voice from family research reinforces the de-evaluation of autistic people. Yes - the autistic voice should be at the core of all research about autistic people's lives."