Influence of personality and contextual factors on the independence of young adults with Down syndrome

The development of autonomy is one of the developmental tasks young adults are faced with, but for young adults with Down syndrome this presents an additional challenge. Rachels and Ruddick (1989) define autonomy as an important component of life from various viewpoints, which also applies to young adults with DS. They defend the opinion that freedom and autonomy are two important conditions for “someone to have their own life”. “To have a life” means that individuals can autonomous plan their daily activities, choose their own circle of people to socialize with, in order to be satisfied and meet their own expectations. Experience has shown that young adults with DS are very much aware of these essential conditions for life and also use them to define their autonomy and freedom. The purpose of this dissertation was to examine the dimensions of autonomy in persons with DS. We were also interested in determining which protective factors affect the successful development of autonomy in young adults with DS and which risk factors hinder a more successful development of autonomy. Parallel to this, we studied the link between the protective and risk factors in different microsystems of persons with DS, as well as how a person with DS understands the influence of various factors on the development of autonomy. The purpose of this study was also to develop a typology of different types of autonomy in persons with DS. We used a qualitative method, which was carried out on the basis of an analysis of semi-structured interviews (multiple case study). We collected the data with semi-structured open interviews with persons with DS, their parents, with the key person and professional staff (four cases and eleven interviews conducted). The results show that the maximum degree of autonomy can be observed in subjects with DS who are not included in an institution but are embedded in a wide social network of persons with a distinct development, and whom the parents allow to be adults to the optimum extent possible as they more or less successfully manage the risks of growing up autonomous. A lower degree of autonomy is observed in subjects with DS whose social network is restricted to institutional staff and the persons living in the institution. Other important persons living with the person with DS and having an ambivalent attitude towards the potential abilities of individuals with DS are one of the obstacles in the development of autonomy. The dissertation concludes with the suggestion that the studied protective and risk factors of persons with DS and the environment should contribute to further consideration on how to develop different contextual conditions for individuals with DS to enable them to develop more autonomy. This is among others important due to the increase in the age structure of individuals with DS as well as other persons with developmental disorders. Due to the extending life expectancy of people with developmental disorders, such persons need to be trained or prepared for an autonomous living, because they will among others outlive their parents or guardians