Autistas em idade adulta e seus familiares : recursos disponíveis e demandas da vida cotidiana

Abstract

The Autism Spectrum Disorders (ASD) has as one of the main aspects the abnormal or damaged development in the social interaction, communication and a restrict amount of interests; modern studies show that the autism prevalence rate is around 20/10’000. It is a fact that the progress of these disorders happen in an individual way, proportionally to the severity levels and environmental conditions, through all of life stages. There are evidences that support that the demands from these disorders affect directly the familiar daily life, in a way that can make the people who care for them to experience crisis in their familiar dynamic as well as the rise of stress and depression symptoms. International studies towards ASD patients in adulthood show the prevalence of the impairment in speech and social interaction in this stage of life, as well of compromised levels of independence and social inclusion and; in addition, the researches point to a shortage of specialized services and the lack of a formal support to these people and their families. This study had as its objective to comprehend the reality and demands of individuals with Autism Spectrum Disorder and their family members, in the matter of their quotidian, their linking to health and/or education institutions, social insertion and perspectives to the future. The study participants consisted of 67 family members of people with ASD in adulthood. In order to meet the objectives, two studies were conducted. The first study aimed to search for institutions and /or non-governmental organizations (NGOs) focused on people with ASD in adulthood and their families in the Brazilian territory, totalizing an amount of 101 institutions and NGOs who performed calls to Adults with ASD. The second study consisted in comprehending the reality and demands of individuals diagnosed with Autism Spectrum Disorders as well as of their families, in which it was used an identification form for collecting general data of the participating families, a questionnaire about the daily events of individuals with autism and their families through the course of the research and WHOQOL – abbreviated, evaluating aspects of Quality of Life of caregivers. To find the participants, we made contact with the coordinators of each institution, NGOs and groups located in Study 1 and the invitations to participate in the study were presented to the family members. Data were analyzed using descriptive statistics and using the technique of the Collective Subject Discourse. Among the key findings, it is shown that the majority of autistic adults still attend to educational institutions, specifically special schools and that they live with their parents and have never received any preparation for entering the job market or the possibility of housing outside the family. Focusing in their families and the quotidian, the participants reported that their lives revolve around care activities related to the person with ASD and that their main sources of social support were their own family members. The family members also recognize the support from the institutions with which the person with autism is linked, though there is a lack of services and institutions that offer an adequate support to adults with ASD. Among other demands, they highlight the need of qualified institutions to young people and adults with multidisciplinary teams, full-time care as well as support services offered to families. In relation to the future, it is discussed the need of improvement in public policies and deeds towards school inclusion in professional courses and universities; preparation and insertion in the labor market, better explanations and promotion of the construction of residences destined to receive also adults with ASD; as well as a higher number of services that offer support to the families of those with ASD.