Comportamiento Informativo de Familiares de Personas con Trastorno del Espectro Autista (TEA): Un Estudio de Caso

This research project aims to raise awareness of the information needs and information seeking behavior of family members of people with Autism Spectrum Disorder (ASD), since in this community the use of information is vital when making the best decision regarding their well-being and quality of life. The methodology used is of a qualitative type and is framed within the ELIS (Everyday Life Information Seeking) model proposed by Reijo Savolainen in 1995; to carry out this research, semi-structured and recorded interviews were conducted with 12 parents of people with ASD who have some relationship with the organization Aletea; this organization attends all kinds of consultations on this subject and tries to train family members and raise awareness about this spectrum to achieve a more inclusive and tolerant society. Also, at a previous stage, qualified informants of the Aletea organization were interviewed, as well as an important professional in health to better contextualize the problem of the use and management of information by these families, as well as to have a more insight clear of the existing advances and the improvements that are still necessary in this community. The results were rigorously analyzed based on categories and subcategories for a better understanding and separated by block according to the main subject to which they refer. Due to the scarce research production in Uruguay and the world on this specific issue, it is expected to contribute and give rise to new research to make this community visible and the obstacles they face daily. Keywords: Information Seeking Behavior; Autism Spectrum Disorder; Information Needs; Information and Autism; Family