Developing better information about the health and health care of people with developmental disabilities in Scotland

Introduction: Neurodevelopmental disorders are a group of disorders that manifest early in development, and include intellectual disabilities and autism, among others. Intellectual disabilities refer to impairments in intellectual functioning (an intelligence quotient <70), together with deficits in adaptive functioning (need for support for daily personal independence and social functioning), with onset during the developmental period. Autism is characterised by persistent deficits in social communication and social interactions across multiple contexts, and restricted, repetitive patterns of behaviour, interests or activities, with onset of these symptoms in the early developmental period. People with intellectual disabilities and people with autism are thought to experience high levels of physical and mental health problems and earlier mortality than other people on average. Yet, there is a dearth of empirical evidence about the health of people with intellectual disabilities and people with autism which presents a barrier to understanding the complex factors that produce differential health outcomes. Ensuring adults with intellectual disabilities or autism live not only longer but healthier lives is a priority for the World Health Organisation and the Scottish Government. Methods: The portfolio of publications (n=15) presented in this mixed methods PhD thesis, represents a selection of my peer reviewed publications in international scientific journals since 2015. I [Laura Hughes-McCormack] am the lead author on 4 of these publications and co-author on 11 publications (including being second author on 8 of these) which were prepared from research I undertook within the Scottish Learning Disabilities Observatory (SLDO) at the Institute of Health and Wellbeing, University of Glasgow. This research programme was funded by the Scottish Government in 2014 to provide evidence on the health of people with intellectual disabilities and autism in Scotland, and thus to inf