Understanding Down syndrome – are we doing the right research?

by Sue Buckley from her blog at blog.SueBuckely.org
I recently had the honour of being invited to be a discussant at a symposium on Language, Reading and School Readiness in Down syndrome at the Gatlinburg conference on Research and Theory in Intellectual and Developmental disabilities (see http://kc.vanderbilt.edu/gatlinburg/program.html for program and abstracts). As my remarks were well received I decided to write them up for my blog and perhaps encourage some discussion. There were a number of interesting papers relevant to understanding learning and development in children with Down syndrome during the meeting and as I listened a number of questions emerged for me.
1. How relevant are ‘typical’ models of development?
For example, in trying to understand the challenges that face children with Down syndrome as they learn to read studies frequently compare the way that they learn and use component skills with ‘typically developing’ children matched for word reading ability. One repeated finding is that the children with Down syndrome are ‘behind’ in their understanding and use of phonics – the ability to sound out letters and blend them when faced with an unfamiliar word. However, they are often competent at reading exception words – using visual sight word learning strengths. I think we need to be cautious in the way we interpret these results – as there may be different ways to achieve an endpoint. Given the incidence of hearing impairments in early years and the difficulties of developing clear speech, we should not be surprised that children with Down syndrome are not well set up to hear or manipulate sounds in words in an aural mode as they begin to learn to read and rely more heavily on the visual route to word identification than the phonological recoding one. In my experience, by the time children with Down syndrome have word reading ages of about 8 years, they do begin to be able to sound out words to read them and to spell and they are helped in this by the visual representation of the sounds in letters and by building words with plastic letters i.e. they go from the visual to the phonological as they are exposed to activities with letters and printed words. I am using this example to caution against the view that the only or even the best way for children with a disability to learn to do something is the way most other children do it. It may be more productive to recognise that there are different ways to reach an endpoint and to actually encourage children to use their strengths and build skills in a different order.