Parents telling their Offspring about Down Syndrome and Disability

Abstract

Abstract The aim of the present study was to explore the role that parents play in fostering the understanding of Down Syndrome (DS) and intellectual disability in their offspring. The participants were 77 young people with DS, aged from 17 to 24 years, and their parents, who were part of the Manchester Down syndrome Cohort. Parents were asked if and how they had told the young person (and their siblings) about DS and disability. The young people with DS were interviewed and photographs were also used to determine whether or not they recognized DS. In addition, verbal mental ages were obtained as an approximation of cognitive level. The majority of families reported an open system of discussion and only five indicated that they had deliberately avoided the issue. However, 43% had not tried to tell explicitly; 53% of these parents felt that the young person would not understand and 32% felt that it was not an issue that affected their lives. The majority of these young people had verbal mental ages of less than 6 years and no demonstrated awareness of DS or disability on the measures used. The results were congruent with a developmental model of the appearance of social categorization. A relatively small number of young people had negative views or denied they had DS, but no association was found with parental telling.