Demands and realities experienced by autistic adults and their families

• Grant number: 13/04117-0
• Support Opportunities: Scholarships in Brazil - Scientific Initiation
• Effective date (Start): May 01, 2013
• Effective date (End): December 31, 2013
• Field of knowledge: Health Sciences - Collective Health - Public Health
• Principal Investigator: Thelma Simões Matsukura
• Grantee: Stefânia Silva Gonçalves
• Host Institution: Centro de Ciências Biológicas e da Saúde (CCBS). Universidade Federal de São Carlos (UFSCAR). São Carlos , SP, Brazil

Abstract

Autism is a disorder that presents as key features developmental changes in social interaction, communication and language and literature indicates that the individual will continue with most of these features during the life cycle. Studies aimed at mothers of autistic children and adolescents, as to show the overhead in communication impairment and dependence in activities of hygiene and nutrition and the presence of symptoms of stress and depressive symptoms. In the national literature, there is little literature available on the subject, involving adolescence and adulthood. Nevertheless, the results of search with families and adult autistic individuals leads to consider the importance of services and programs to meet the demands placed on this stage of the life cycle. The present study aims to recognize the issues and demands of autistic people in adulthood and their families and identify insertions and support possibilities offered by specialist services to this population. As a specific objective, we intend to perform surveys of non-governmental organizations (NGOs) and institutions offering health services, educational and / or others, aimed at autistic adults and their families in the state of São Paulo-SP. To collect the data will be used a script of semi-structured interview, to be applied with families and a Protocol Registration of NGOs / Institutions for the survey, which will take place through the world wide web. The search results are organized by NGOs and institutions, in informative tables and presented descriptively and the data from the interviews will be analyzed through the transcripts, that have grouped and categorized content, identifying themes representative present in participants and building common discourse, using the technique of the Collective Subject Discourse. This study should help in adding knowledge on the subject, highlighting the focus here the possibility of a phase of the life cycle still poorly considered by the literature, especially in national studies. The expectation is also to present systematic information about the services available in the state. Furthermore, we intend to discuss about the demands presented by the families and the services available to them.Keywords: autistic disorder, adult, family relationships. (AU)