"Being the sister of a child with Autism can be both a challenging and enriching experience&quo
UCL Institute of Education’s (IOE) SERL hosted a week occupation at the Centres of Arts and Education in the city of Kalamata (Greece) in partnership with Association of Parents of Children & Adolescents with Autism and Specialised Autism Day Care Centre of Messinias Prefecture (part of decentralized Greek National Health System-Domain of Mental Health).
Being the sister of a child with Autism can be both a challenging and enriching experience. Siblings’ experiences can be complex and often difficult to capture using traditional methods, as they are often habitual and taken for granted. Many everyday activities are likely to be left unquestioned. Siblings in early adolescent years growing up with a sibling with ASD have been the subject of little previous research, especially in terms of sisters’ experiences.
Explaining the process behind the occupation, Ms Georgia Pavlopoulou,PhD research student and Head of Family & School Partnership at Lilas Lab says: ‘This is part of my PhD work here at UCL with supervision by Dagmara Dimitriou that aims to explore and describe relationships and environmental settings in the life of the typically developing sisters growing up with a preverbal sibling with ASD. This study is rooted in positive youth empowerment/ community-based participatory research (CBRP) and considers family members as strategic actors and full partners in the study’s research and advocacy aims. Innovative strategies in both research and intervention may shift the balance between vulnerability and resilience for those living with autism and their families and enhance family resilience. Major part of my work is to research ‘with’ rather than ‘on’ families. This partnership enabled us to maximise the positive impact of our work produced at Lilas Lab.’’
“In December 2016, we (Georgia and sisters representatives) presented sisters driven analysis and key messages to the Association of Parents. The legal representatives of the Association welcomed ideas to allow me facilitate collaborative groups amongst sisters,parents and therapy teams. Building upon a series of photovoice workshops, sisters were encouraged to think about spaces for learning and alternative ways to promote their agenda, which we then translated into projects in their local community today .”
The sisters challenged our understanding of family experiences and autism through an exploration of their environmental influences and their experiences with their families, peers and extended community. Students’ faces from local schools, teachers, therapy teams, reported from media, stakeholders and policy makes filled the Exhibition room for a week. The event ended with a talk by Georgia Pavlopoulou and 4 sisters who wanted to share their stories and shed light on what it means to grow up with a sibling with autism and complex needs in adolescence.
The occupation featured a photo exhibition, provocative discussions, workshops, and video screenings created by the sisters who participated in the research. Panel discussions raised questions such as “What is it like to grow up with a brother or sister with autism?”, “Can we democratise family research and family intervention in families with complex needs?”, and ‘What do siblings wish you know?' “The occupation gets local community to think about what it means to grow up with a sibling with autism and how we can democratise our services” says Head of Local Educational Authority Kostas Saravelakis. “Sisters , as experts of their own life participated in photo exhibitions, tv interviews and talks all facilitated by Georgia Pavlopoulou, research student at Lilas Lab at IOE,UCL. We expect teachers, therapists and local community to challenge the borders and spaces between their clinical planning and teaching promoting empathy and autism awareness in our local society.”
Dr Dagmara Dimitriou, Reader in Developmental Science and Director of SERL at the IOE, explains: “Sisters were in the centre as agents to identify their problems and main areas of concern and to set the agenda for future changes in policy is an essential goal in relation to both quality improvement and cost containment of therapy services. A number of points emerge from the sisters’ photos that are unlikely to have come from the researcher setting the agenda for an interview. Overall, the findings highlighted the feelings, needs and thoughts that the sisters may experience in the family but also as students and young females in the community. All participants wanted to remain as close to their sibling as possible, but also independent and social outside of the family. The sisters spoke in great detail on aspects of life that have not been addressed before in research and at intervention levels, such as sleep, school and respite time. ’’
In one of the talks , sister Efi Stamopoulou notes that living with autism is not a case of black and white. As she and other sisters’ revealed through their photos and their narratives the problem is often not autism per se in the family but lack of social support and understanding in the local community of their sibling’s intense needs.
Georgia emphasised on the importance of inducting reasoning in research and writing as a caring act to promote the agenda of families who use current autism specific services. She also proposed new ways of how to think of siblings' needs and to engage them proactively in our clinical planning.