Development in context

In recent years, researchers have begun to describe in detail the effects of Down syndrome on different aspects of children's development. This has shown a profile of strengths and weaknesses, with some areas of development more delayed than others. The typical profile is one of strengths in social development and practical daily living skills over time so that most teenagers are quite independent and socially able adults. However, the typical weaknesses are in speech, language and working memory development resulting in a an 'uneven profile'.

Some of the reasons for this profile are beginning to be understood and some of this information has practical implications that can already be applied even though much more research is needed to fully inform our understanding of the issues. The main importance of recognising the uneven profile of development is that it indicates that specific approaches to teaching children with Down syndrome may be needed which build on their strengths. They may not make optimal progress if treated like typically developing children. If the children's delays in spoken language and memory development are addressed and their strengths as visual learners recognised in all teaching and learning situations then they may be able to make optimal progress.

Research

The Trust staff have been aware of the slowly emerging evidence of a specific profile since the 1980's, when the high incidence of conductive hearing loss among infants with Down syndrome and the benefits of using signing in early language programmes were first reported. The children being taught using sign were showing more advanced understanding and ability to communicate than had been reported previously. At the same time we were seeing early readers - again evidence of a visual learning strength and more cognitive abilities than previously assumed for children with Down syndrome. The Trust's practitioner team were constantly incorporating the information emerging into teaching approaches for preschool and school age children.^[1-4]

Changing the profile

Data collected as part of the Trust's second survey of teenage development in 1999-2000 shows that it is possible to change the profile.^[5,6]

The teenagers who have received all their education in inclusive mainstream classes and who have had the teaching and learning approaches adapted to take account of their strengths, weaknesses and learning style no longer show the relative delay in speech, language and literacy reported in earlier research.

This is the only published evidence that shows that education and intervention can significantly improve the speech, language and cognitive profile if children with Down syndrome. It emphasises that development is not fixed by genes at birth in any simple way and that the developmental outcomes for children with Down syndrome can be significantly changed.

Adolescence

In 1985-86, the Trust conducted its first study of the development, achievements and lives of adolescents with Down syndrome and their families. This was the first detailed report of its kind and 90 families took part - willingly sharing much personal information about their lives. The study provided a detailed description of the range of achievements of the young people and showed that outcomes for them were influenced by the quality of education and by family differences - just like all other children.^[7]

In the second teenage study in 1999-2000, the same data was collected for a new cohort of teenagers and some additional data. Given that there was 14 years between the two studies, we expected that improved educational expectations and more positive social attitudes and acceptance would have led to more advanced progress. This only turned out to be the case for teenagers who were included in mainstream school. The research team were surprised to find no improvement in the achievements of the teenagers in special education classrooms. The teenagers in the inclusive classrooms were 2-3 years ahead on measure of spoken language and literacy, they were also more socially mature with better behaviour.^[8]

Impact

The significance of the data showing that the expected developmental profile can be changed is now informing education and therapy programmes worldwide. It also provides clear evidence that environmental and educational factors make a difference to the speech, language and academic achievements of individuals with Down syndrome.

The Trust's first study of the lives and achievements of teenagers with Down syndrome and their families was pioneering and drew attention to a range of significant issues including environmental effects on their progress. The later research into teenagers progress has reinforced and extended the findings of the earlier work. The Trust staff provide many training workshops on these issues each year.

Through its work in supporting research and practice by hosting international conferences, the Trust brings together researchers and practitioners from across the world to share best practice and to discuss the latest research studies.

Education

The Trust has published 6 books on the lives and development of children and adults with Down syndrome and the Trust’s Research Director has co-edited an international publication on the issues. The Trust staff have published 3 book chapters, 1 paper in a refereed journal and 11 articles in other publications. They have presented 14 invited keynotes/papers at peer-reviewed national and international conferences.

References

1. Bird, G. & Buckley, S. J. (1994). Meeting the educational needs of children with Down's syndrome: a resource for teachers. Portsmouth: University of Portsmouth. ISBN: 1-898-108-27-7.
2. Buckley, S. & Sacks, B. (2001). An overview of the development of infants with Down syndrome (0-5 years). Portsmouth, UK: The Down Syndrome Educational Trust.
3. Buckley, S. & Sacks, B. (2001). An overview of the development of children with Down syndrome (5-11 years). Portsmouth, UK: The Down Syndrome Educational Trust.
4. Buckley, S. & Sacks, B. (2001). An overview of the development of teenagers with Down syndrome (11-16 years). Portsmouth, UK: The Down Syndrome Educational Trust.
5. Buckley, S., Bird, G. & Sacks, B. (2006) Evidence that we can change the profile from a study of inclusive education. Down Syndrome Research and Practice 9 (3) 51-53.
6. Buckley, S.J., Bird, G., Sacks, B. & Archer, T (2006). A comparison of mainstream and special school education for teenagers with Down syndrome: Implications for parents and teachers. Down Syndrome Research and Practice 9 (3), 54-67.
7. Buckley, S. J. & Sacks, B. I. (1987). The adolescent with Down's syndrome - life for the teenager and for the family. Portsmouth: Portsmouth Polytechnic. ISBN: 0-900234-19-9.
8. Buckley, S., Bird, G., Sacks, B., & Archer, T. (2002). The achievements of teenagers with Down syndrome. Down Syndrome News and Update, 2(3), 90-96. ISSN: 1463-6212

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