Parents’ Attitudes Toward the Process of Attaining a Diagnosis of Autism Spectrum Disorder for Their Children

Background: Research does not have enough data about the parent’s attitudes and responses to having a child diagnosed with ASD. This knowledge is crucial in the design and development of public policies for screening, diagnosis and general access to services.

Objectives: Explore parents’ attitudes toward the process of attaining a diagnosis of autism spectrum disorder for their children in a sample of Venezuelan caregivers.

Methods: Parents were recruited via key informants at special schools, child development centers, and health clinics. 20 Venezuelan parents of children between 5 and 10 years of age with a diagnosis of ASD were interviewed. The instrument was a semi-structured qualitative interview which was validated by experts. Sessions were audio recorded and transcribed. Two researchers coded transcripts, and data were analyzed using thematic analysis.

Results: Three central themes were constructed following data analysis: 1.) parents’ thoughts about diagnostic and the professionals involved in the diagnosis, 2.) parents’ behaviors related to diagnostic, family and self, and 3.) parents’ emotions about diagnostic and self. Parents expressed ambivalent attitudes with both positive and negative thoughts, emotions and behaviors related to acceptance, decision making, searching professional help for the mental health of their children. Concerns about the costs of services, availability of services, the organization of time, and the future of their child were common expressions from parents. Reports about acceptance and support from extended family were also frequent in this sample

Conclusions: Results contribute to understanding how parents’ attitudes toward the process of attaining a diagnosis of ASD for their children are related to the availability of services, financial burden, and support from family. Their lived experiences about knowing of their child’s autism, identify it as a defeat, uncertain and something unfortunate. These results have important implications for future work with Hispanic families and supporting them in the process of identification and diagnosis of ASD of one of their members.