Exploring transition to adulthood from the perspectives of young people with high functioning autism and their families: a research portfolio
Wright, Alice Elisabeth
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Introduction: Young people with high functioning autism spectrum disorders (HFASD) are particularly vulnerable to developing comorbid depression. It has been suggested that young people with HFASD and comorbid mental health difficulties are likely to experience difficulties during the transition to adulthood. This transition involves significant changes in both services and daily routine, something which people with HFASD often find difficult. Aims: This thesis includes two distinct pieces of work. A systematic review aiming to understand the prevalence of depression in children and young people with HFASD. A qualitative study aiming to explore transition to adulthood from the perspectives of young people with HFASD, who currently attend child and adolescent mental health services (CAMHS), and their families. Methods: For the systematic review, literature reporting the prevalence of depression in children and young people with HFASD was systematically searched and reviewed. For the qualitative study, data collection and analysis followed the principles of Interpretative Phenomenological Analysis (IPA). Four dyads of a young person with HFASD and a parent were interviewed. Results: The systematic review identified 18 studies which described results from 17 independent samples. The prevalence reported varied from 0% to 83%. This variation is most likely explained by methodological differences between studies. In the qualitative study, transition to adulthood was described as a process during which the young person is developing independence, while parents continue to have a role in providing support. Current and future support needs were perceived differently by the young people with HFASD than their parents, with the young people reporting less need for support. Conclusions: Further research is needed to better understand how to assess depression in this population, as well as the impact of age, gender, setting, medication use and other comorbidities. Transition is a time of uncertainty and change for young people, during which they become more independent of their families. Services need to consider the impact of these processes and young people’s perceptions about what it means to receive support.