Trajectories, Long-Term Outcomes and Family Experiences of 76 Adults with Autism Spectrum Disorder
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The aim of this retrospective study was to retrace the trajectories and long-term outcomes of individuals with autism in France, and to explore the family experiences. Data obtained from parents enables us to follow the trajectories of 76 adults. Two-thirds of adults with severe autism had a very poor outcome. Those with moderate autism had a better outcome. In adulthood, the majority were in residential accommodation. None were living independently. The trajectories of people with Asperger syndrome or high-functioning autism were more positive since all of them attended school for a long time and some went to university. All of them had a good outcome but they remained dependent on aging parents who had few available supports.
KeywordsAutism Asperger syndrome Outcome Trajectory Adults
This research was supported by INSERM (Institut National de la Santé et de la Recherche Médicale), and the Fondation de France. We wish to thank Pr. A. Danion and Dr. V. Pascal from Louis Pasteur University (IRIST-Strasbourg) for their participation in the design and the distribution of the questionnaire, as well as Pr. David Cohen from the Pitié-Salpêtrière Hospital. We are grateful to the parents’ associations and the professionals who distributed the questionnaire, and the parents who took the time to fill it in and answer our questions. We would also like to thank also Christine Calderon for her transcriptions of interviews, as well as Angela Swaine Verdier and Ken Day for rereading the manuscript.
Brigitte Chamak led the conceptualization and design of the study, conducted the in-depth interviews, collected and analyzed the data, drafted the initial manuscript, revised the manuscript. Béatrice Bonniau contributed to the design of the study, collected and analyzed the data, and approved the final manuscript.
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