Family adaptation to the diagnosis of Autistic Spectrum Disorder: an understanding of the experience of families

Abstract

In the Autism Spectrum Disorder (ASD) it can be found present persistent deficits in communication and social interaction in diverse contexts, in addition to behaviour patterns and repetitive interests. Each family adapts differently to the impact of the diagnosis, either by the attention demanded by the family members or by the ambivalent emotions that such pathology arouses. Objectives: To investigate family adaptation to ASD in consequence of the diagnosis in the family by means of a qualitative. Methods: After the approval by the ethical committee in research, for data collection it was used the Perceived Stress Scale (PSS), the Medical Outcomes Study Social Support Survey (MOS-SSS) and the Scale of parenting beliefs and caring practices in both studies, associated with a semi-structured interview in the qualitative one and a characterization script in the quantitative one. Results study: Four families which were found by means of non-probabilistic sampling of snowball participated, totaling eight participants. After the transcription and thematic analysis of content of the interviews, eight categories emerged from the reports: “ASD” (191 times), “Impact of diagnosis” (313), “Family adaptation” (194), “Treatment” (100), “Beliefs” (69), “Support network” (148), “Future perspectives” (101) and “Families messages” (16). Discussion: The diagnosis of ASD promotes an important family adaptation, which is associated with a significant level of stress, that may interfere directly in the care practices of family members in relation to the autistic. The social support offered by family members, friends and also health and education professionals and also institutions may contribute to minimize stress effects, favouring family adaptation. Conclusions: It is necessary a comprehensive look at the families that receive the ADS diagnosis, considering the complexity of the adaptation process they experience.