The Fragile X Society hosted an in-person conference at the Midlands Art Centre (Birmingham) for families and carers of people with FXS. They invited researchers from England and Scotland to talk about previous and current work with people with fragile X syndrome and their families.
Kat organised a research workshop with Prof Gaia Scerif hosted at St. Catherine’s College (University of Oxford) bringing together UK researchers interested in fragile X syndrome to share expertise, discuss current work and form future collaborations. There were a range of interesting sessions, including a talk by Prof Jonathan Herring on the law and practice of gaining consent from people with learning disabilities, quick fire updates on current research from UCL, University of Oxford, University of Surrey, University of Warwick and University of Edinburgh. We were also lucky enough to have a brilliant session with two young people who told us all about what it is like to have fragile X syndrome. Some family members and carers of those with fragile X syndrome joined us online and shared their ideas on how families and researchers can collaborate to shape future research.
This paper describes a research tool to investigate the development of mindreading skills in children with no or minimal speech. She found that, although autistic children passed tasks assessing intention reading and cooperation in the same order as children without autism, their performance on tasks, where they needed to follow another person’s gaze and cooperate with others, was delayed. This is the first study to explore the developmental progression of these early skills and hopefully the tool can be used to better understand social difficulties even in very young or disabled children.
Kat and Jo published their paper An observational study of social interaction skills and behaviors in Cornelia de Lange, fragile X and Ruinstein-Taybi syndromes in Journal of Autism and Developmental Disorders. This paper described the profile of strengths and weaknesses in behaviours indicative of social interaction skills, social enjoyment, social motivation and social discomfort to characterise sociability in genetic syndromes and explore whether these skills are associated with age and autistic traits.