Families of children and adolescents with autism: everyday reality and care at different stages of development

Abstract

In each development phase of an individual suffering from a disability, different demands and challenges arise to the families and professionals involved in this reality. This study has aimed on identifying, through the standpoint of the families of autistic infants and teenagers, their daily experiences and demands in reality of the care given to their children during three development phases. Twenty families of infants and teenagers with autism diagnostics have participated of this study. The instruments used were: semi structured interview routines, and Identifi cation Form. Amongst the main results, there have been identifi ed that the daily routine of the participant families is organized according to the autistic family members, their needs, and their diffi culties. Such aspect has been observed within the domestic environment as well as in the external activities. Some of the identifi ed diffi culties are shared by all the participants, such as in social activities, in the communication, their dependency with their personal hygiene. In conclusion, this study have achieved its goals contributing for enlarging the knowledge in this area, providing benefi ts for future researches, actions and interventions planning for this population, as well as supporting planning public policies.