Communication, social‐emotional development and parenting stress in Cornelia‐de‐Lange syndrome

Cornelia-de-Lange syndrome is a dysmorphogenic disorder characterized by multiple congenital abnormalities, and in most cases, severe cognitive limitations. Parents of 27 children with Cornelia-de-Lange syndrome completed psychological questionnaires concerning communicative and social-emotional behaviours, and reported on their parenting stress. Only four children were able to use speech, but most of the older children expressed needs through non-verbal means. Feeding problems, over-activity, irritability and stereotyped behaviours were characteristic for the majority of the group. Self-injurious behaviours occur in more than 40%. Parenting stress is very high, especially in parents of older children.