The family's perception in the diagnosis of autism spectrum disorder

*Correspondence: [e-mail].

Abstract

Background: Autism Spectrum Disorder (ASD) is currently one of the most talked-about neuropsychiatric disorders, although many still do not fully understand the topic and the impacts it has on the family sphere. This research aimed to seek and analyze the transformations that occur within the family sphere when a diagnosis of ASD is made in a family member and throughout the initial treatment. Therefore, this study will provide information on how ASD is capable of interfering with the behavior, social interaction, and lifestyle of the family.

Objective: To evaluate the family's perception of the diagnosis of ASD and how it influences them in a biological, psychological, and economic context. With this in mind, it sought to promote a discussion about the social context in which the family finds itself and to associate this context with the perception of the diagnosis. In addition, data related to consanguinity, age, and profession of the parents were analyzed in the development of ASD.

Methods: The methodology used consists of applying a semi-structured questionnaire after the diagnosis/monitoring consultation of ASD, addressing quantitative and qualitative questions about the disorder's development. Data were collected from various families, and the analysis of the material was based on the content collected during the interviews. The research included relatives of children and pre-adolescents who recently (up to one year) received a diagnosis of ASD.

Results: The results of this research highlighted the various ways in which the family sphere reacted to the diagnosis given at that moment. For example, some families accepted the diagnosis in the best possible way, taking what was said in the consultation seriously and seeking the best for their child. Another part faced serious problems of rejection, denial of the condition, as well as financial difficulties. Thus, over time, it was possible to analyze the evolution or regression of the family dynamics with adequate support.

Conclusion: Individuals with autism spectrum disorder are exposed to various stages of family acceptance, denial, shattered expectations, and necessary adaptation. Therefore, it is necessary to seek to understand the complexity of individuals with ASD and help them in their development.

Publication History

Article published online:
12 May 2025