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IOE researchers teach local communities about autism, focusing on siblings

28 June 2017

LiLas Kalamata girls

Researchers from the Lifespan Learning and Sleep Lab (LiLAS) at the UCL Institute of Education (IOE) recently hosted an event at the Centre of Arts and Education in Kalamata, Greece, that aimed to teach local communities about autism through focusing on sibling relations.

During the week-long event, the IOE researchers hosted a photo exhibition, gave talks and showed video screenings around their research activities. Panel discussions raised questions such as "What is it like to grow up with a brother or sister with autism?" and "Can we democratise family research and family intervention in families with complex needs?"

The event concluded with a talk from IOE PhD student Georgia Pavlopoulou, who was joined by four sisters who wanted to share their stories on what it means to grow up with a sibling with autism and complex needs in adolescence.

In her talk, Miss Pavlopoulou explained that there is little research on young adolescents growing up with a sibling with ASD; especially concerning sisters' experiences. She discussed the ways that siblings' experiences can be complex and often difficult to capture using traditional research methods, as they are often habitual and taken for granted.

Speaking about her research at the IOE, Miss Pavlopoulou said:

"With supervision by Dr Dagmara Dimitriou, my PhD work aims to explore and describe relationships and environmental settings in the life of typically developing sisters growing up with a preverbal sibling with ASD. I work closely with the families to examine how strategies in research and intervention may shift the balance between vulnerability and resilience for those living with autism and their families and enhance family resilience."

LiLas Kalamata audience

Kostas Saravelakis, head of a local educational authority and one of the event participants, said:

"The event makes the local community think about what it means to grow up with a sibling with autism and how we can improve our services. 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."

LiLas Kalamata press

Dr Dagmara Dimitriou, Reader in Developmental Science and Director of LiLAS Lab, further explains this research area:

"We can only understand issues within the families if they are active participants. In the current study, sisters were in the centre as agents and we have learnt a great deal from them. This research is promising for future changes in policy and in relation to both quality improvement and cost containment of therapy services. For example, the sisters commented about aspects of life that have not been addressed before at research and intervention levels; these include problems at school, sleep difficulties and respite time. ''

The event demonstrated the need for more participatory research, which would include focusing on traditionally neglected voices. The team will also use its clinical planning as a way to empower all family members.

Media

  • Greek press (Tharros news)

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