Jeg vil greie tingene på egen hånd! En kvalitativ studie av hvilke utfordringer ungdom med diagnosen Asperger syndrom møter i overgangen til et voksent liv og hvilke holdninger de har til å få hjelp utenfra

Summary Background: In recent years there has been a strong increase in the number of people with ASD (Autism Spectrum Disorder), including people with Asperger Syndrome (AS). This means that there are a significant number of people in the population of adolescents with this condition. At the same time we seem to live in an individualized culture, where succeeding in most areas is important. The elements that constitute a successful adolescent have probably not been more complex ever. One should do well both in school and jobs, one should cultivate ones leisure interests, keep fit and socialize well with friends. Good communicational skills, flexibility and speediness are important capacities to succeed in many of these arenas. With this backdrop my aim is to investigate how young people with AS feel about everyday life. Does everyday life for young people with AS bring about challengers in the transition to adulthood? Are they in need of any support? Which are their own thoughts about receiving support and such help? Methodology: This is a qualitative study where six young people with AS were interviewed. One of the parents in five of the six families where interviewed. Results: Young people with AS diagnose confront a lot of challenges in the transition to adulthood. Many of those are in need of adaptations, help and support, in order to live an independent life. This includes support with private finances, cleaning, cooking, reminders regarding personal hygiene, and many need help to establish and maintain their social networks. They are in need of an everyday personal adviser. The adolescents and parents had somewhat different opinions of the needs. The adolescents do not want to stand out, and do not want to be treated differently. They want to be "normal" as they say. Most of them where out of school and work, and their parents strongly want them to have something to do. The parents had an opinion that their young ones need support and adaptations to be able to complete school, and that they need help to find and keep well suited work. The adolescents’ opinion on the need for external support and help was mainly negative. "External help" could challenge their image of themselves and, evidently, the way services function today, this is something they want minimized. This leaves the parents with a big perceived responsibility, as they cannot let go of the rudder, before they know that some other help is available, and in fact functioning. Conclusions: There are lots of challenges for young people with the diagnosis AS in the transition to adulthood according to both teenagers and their parents. The transitions can be vague and ambiguous, and appear to be rather circular and recurrent than linear. Consequently, there is a need for support in some areas, but these needs are partly not confirmed by the young ones themselves. Young people with AS have an ambiguous relationship towards their diagnosis and the need for support. On one hand they acknowledge the difficulties and challenges. On the other hand they would rather be like everyone else and are reluctant to receive any help. To obtain a common understanding about the challengers among the adolescents, their parents and with the service providers, could be difficult. Getting individually adapted help, that also helps mastering, could prove difficult. The reasons are complex. Findings of this study indicate that limitations of accessibility, continuity and competences on AS could involve supplementary difficulties for youths in this situation. It also seems that the young ones and their parents has been in need of more help and guidance than their have got during adolescence. Keywords: transitions, stress, professional support, self-perception, independency, dependency