IOE researchers build knowledge on siblings' wellbeing by engaging autism stakeholders in London
20 July 2018
Staff from the Lifespan Learning and Sleep (LiLAS) Lab attended the Wandsworth Autism Fayre and Unseen Disabilities, to raise awareness of children's experiences of growing up with an autistic sibling
Sibling relationships play a central role in family life and are a powerful components of child development. Their dynamic interactions have a large impact on socio-cognitive development and wellbeing of all family members. Despite this, siblings of a child with autism have previously received minimal research interest.
To build knowledge among autism stakeholders, the researchers hosted a knowledge exchange workshop, a Photovoice exhibition, talks, and short screenings of their research activities. These included two new studies presented by UCL Institute of Education (IOE) PhD candidates Ms Wasmiah Bin Eid and Ms Mina Jeon, looking at sleep and learning in autistic children as well as cortisol levels and sleep patterns of mothers raising an autistic child.
The siblings of autistic children designed the Photovoice exhibition, using photo data they collected in a study in Greece led by IOE Senior Teaching Fellow Georgia Pavlopoulou. Photovoice enables siblings to document their experiences and captures their voice in an interactive, dynamic way.
Ms Pavlopoulou reports:
"The siblings reported barriers in their sense of belonging in a number of social spaces and the detrimental effect this had on their wellbeing. Fundamental to positive narratives of well-being, were feelings of connection and recognition from others and positive accepting relationships with extended family members and peers. This may inform current beliefs that underlie autism healthcare interventions, where autistic children are always seen as the 'problem'. The autistic siblings also mentioned different meaningful ways they contribute to the family life."
The research aims to train and engage international audiences in siblings' related issues, to promote acceptance in the local community, and share both typically developing and autistic peoples' experiences of siblinghood and opportunities for wellbeing. To conclude the workshop Ms Pavlopoulou discussed the ways sisters reported their environmental settings and relationships in their family, school and their local community. This event is part of a series of engagement events the LiLAS Lab aims to hold for families across the UK.
The fayre, held on 11 July 2018 at Tooting Leisure Centre, Wandsworth, was organised by the A2ndVoice voluntary support group and Sen Talk CIC parent-led group for parents and carers of children with Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD) and other related conditions. It featured more than 30 stallholders from special educational needs and disability organisations.
Venessa Bob, founder of A2ndVoice and Member of the All Party Parliamentary Group on Autism Advisory Group, said of the event:
"It has been extremely helpful for us to connect with IOE researchers and invite our delegates to discuss topics such as siblings support and sleep issues with a group of experts. The parents who came today were given a chance to understand new data as well as to reflect on their own experiences and think of ways they may promote autism acceptance in their local communities. This event brings together researchers, stakeholders and black and Asian families which still remain under-presented in autism agendas."