Adolescence

The charity has undertaken a longitudinal study of teenagers and young adults with Down syndrome  to see what life is like for them and their families.

Research

In 1987, Professors Sue Buckley and Ben Sacks carried out an extensive survey of 90 teenagers with Down syndrome living in Hampshire to see what life was like for them and their families.

The survey described many aspects of daily life for the teenagers and their families including how independent they were, their school achievements, relationships, health, growth, sexual development and general behaviour. In addition, information was gathered on the impact of caring for a child with Down syndrome on their families.

We repeated the study 13 years later by surveying the present cohort of teenagers to assess the effects of changing attitudes and improvements in health care and educational opportunities, and are currently writing up the full results in two articles, one for parents and practitioners and one for researchers.

A major finding was the benefits of mainstream schooling for speech and language and literacy skills. We were disappointed to find only small progress in social independence and social inclusion in the community since 1986 and little change in daily living skills or behaviour measures. We were also surprised to find that our special schools had hardly improved at all in 13 years, despite considerable pressure to do so and the availability of more knowledge of the children's learning needs.

The practical reports from this latest study will use the information to provide advice and guidelines for parents and teachers.

We will continue to follow our included and our special school teenagers and we hope to start studies of further education and employment programmes.

References

A list of publications related to this area of work is also available.