[Young people with Down syndrome: independence and social functioning]

Abstract

Objective: To determine the level of independence and social functioning in young people with Down syndrome.

Design: Cross-sectional study.

Method: Via the Dutch Down Syndrome Foundation (Stichting Downsyndroom), we asked parents of children with Down syndrome born in 1992, 1993 or 1994 to complete a written questionnaire about their child. This questionnaire contained the following standardised lists: the 'Dutch social competence rating scale for people with a learning disability', the 'Child behaviour checklist' and the 'Children's social behaviour questionnaire', and additional questions on background characteristics. The results of this Dutch cohort were compared with available data on peers without Down syndrome.

Results: Data from 322 young people with Down syndrome, mean age 18.4 years (range 16.8-19.9 years), were collected (response 63%). Almost 60% of participants mastered basic skills of independent functioning, such as maintaining adequate standards of personal hygiene, preparing breakfast and being able to spend at least 30 minutes at home alone. About 10% of the participants had basic skills such as cooking and paying in a shop. Nine out of ten participants had more problems with social functioning than peers without Down syndrome, mainly with social interaction, processing information and regulating their emotions. Half of the participants had clinically relevant behavioural problems.

Conclusion: The results of this study show that young people with Down syndrome have limited practical and social skills, and more behavioural problems than their peers without Down syndrome. In daily life they are to a greater or lesser extent dependent on others, and need lifelong support.