Stereotype of children with Down’s syndrome as almost always happy is incorrect
Young people with Down’s syndrome are nearly always shown in the media as happy and able to function well. This image is incorrect, according to researcher Helma van Gameren-Oosterom at Leiden University. On the contrary, they often have behavioural problems, as unique, large-scale research has shown.
Van Gameren-Oosterom herself has a brother with Down’s syndrome. She questioned how realistic TV programmes are, such as Down met Johnny (‘Down’s with Johnny’), that show young people with Down’s as able to function above average. ‘I know that there are many things my brother and his friends who also have Down’s find hard to deal with. At the same time, there’s a lot of focus on getting adults and children with Down’s to participate fully in society, so it’s important to have a realistic idea of what is actually feasible for them.’
Van Gameren-Oosterom’s PhD analyses data from more than 300 children who were aged between six and ten at the start of her research. She studied the same group again eight years later, in 2011. Her research, which she carried out at TNO (the Netherlands Organisation for Applied Scientific Research), is the first large-scale, national study in this area. ‘There have been smaller studies on young children with Down’s, focusing on specific areas such as their levels of language competence or the state of their health, for example, but there was no previous study researching to what extent young people with Down’s are able to look after themselves when they become adults.’
Her conclusion, namely that the large majority of people with Down’s remain dependent on adult care, holds no surprises. These general assumptions are now for the first time supported by precise data. Six out of 10 adolescents are able to wash and dress themselves and prepare breakfast. Four out of 10 can write a short letter, read parts of a book or add up numbers (up to 10). But fewer than one in 10 are able to prepare a simple meal or buy something in a shop. Two-thirds of the adolescents cannot cope alone at home for more than half an hour. ‘Using this information, doctors are in a better position to explain to parents the effects of Down’s syndrome on how their children are likely to be able to manage on a day-to-day basis,’ says Van Gameren-Oosterom.
Her research has shown that the stereotypical image of children and adolescents with Down’s as being particularly friendly and happy individuals is at odds with the reality. Socially, nine out of ten adolescents clearly face more problems than their peers without Down’s. They are withdrawn and shy, and have difficulty making contact with people; seven out of ten tend to retreat completely into a world of their own and have difficulty following a conversation. One in three is regularly disobedient and half the total number of adolescents panic when faced with change. They suffer less from anxiety and depression, however, compared to adolescents without Down's.
Van Gameren-Oosterom believes that care specialists still focus too much on only the physical health of people with Down’s. ‘New training programmes are needed that will enhance the social functioning of people with this syndrome. This is already an important aspect of the care given in special schools but it would help if parents, too, could help their children practise social interactions. There’s a lot to be gained, although it’s difficult to be precise about this. We hope to be able to examine this group again in a few years’ time, and then we’ll know even more.’
(25 June 2013)
H.B.M. van Gameren-Oosterom: Growth, development and social functioning of individuals with Down syndrome
Date: 19 June 2013
PhD supervisors: Prof. S.E. Buitendijk and Prof. H.M. Oudesluys-Murphy
Van Gameren-Oosterom carried out her research at TNO. Apart from examining the social functioning of children and adolescents with Down’s syndrome, she also studied the number of births, and the children’s physical growth and development. This research showed that these children are twice as likely to suffer from overweight compared to other children of the same age: 26% of the boys with Down’s syndrome and 32% of the girls are overweight.
Health across the Human Life Cycle is one of the six themes for research at Leiden University.