Much of the research that provides the basis to this book was generously funded by the Community Fund in a grant to the Cornelia de Lange Syndrome Foundation (UK and Ireland) and Professor Chris Oliver at the School of Psychology, University of Birmingham. Additionally, Jenny Sloneem was awarded a PhD studentship by the Medical Research Council that funded her studies of Cornelia de Lange Syndrome over three years. This book would not have been written if it was not for this financial support.

The information that we have collected in our research came from parents, teachers and other carers of children and adults with Cornelia de Lange Syndrome who gave their time freely to complete questionnaires and take part in interviews. We are grateful to them for their diligence and tenacity in these tasks. We would also acknowledge the significant help of the parents, teachers and carers of the children and adults in the comparison group of our research project who took part with no less diligence or tenacity. We are also grateful to all participants in the research who allowed us to observe them and record their behaviour so that we might try to understand. We hope that the work ultimately contributes to their wellbeing and the wellbeing of other children and adults with intellectual disability.

Finally, we thank the Board of Trustees of the Cornelia de Lange Syndrome Foundation (UK and Ireland) who supported the research at every opportunity and Alan Peaford who has the remarkable ability for getting people to agree to do things without them ever knowing quite what they are agreeing to until it’s all too late. If it wasn’t for him, this book would still be in the “planning stages”.