Understanding autism and its treatment: The child's perspective

Introduction: While parents' and professionals’ perceptions regarding children with autism spectrum disorder (ASD) have been studied extensively, limited data regarding the perspectives of children with ASD on their needs and the challenges they face are available. The study aimed to examine how children with ASD understand their condition and the aims of the interventions they undergo. Methods: Nineteen children and adolescents (ages 5.7–14.2 years) formally diagnosed with ASD, with borderline to high intelligence (range 70–140), and able to converse verbally were interviewed in person at a child development clinic. A qualitative approach was used to capture children's perceptions of their strengths and challenges and their understanding of a novel ASD treatment. The interview included direct and projective open-ended questions on each topic. Interpretive content analysis was used to evaluate the children's answers. Medical data were extracted from medical records. The children's parents completed questionnaires on their children's disability levels, awareness of ASD diagnosis, and sociodemographic details. Findings: Children spoke of their embodied sensations and feelings and discussed “normality” vs. “disability.” They varied in their awareness of their diagnosis/symptoms, and only one boy named his diagnosis and described its consequences in detail. Most children lacked an understanding of the educational and therapeutic aspects of the goals set for them. Discussion and conclusions: Children with ASD are aware of their unique emotional and behavioral challenges. Nevertheless, they are frequently excluded from the process of patient information provision and lack an understanding of the goals of interventions. Findings suggest the need to explore developmentally and emotionally adaptive ways to involve children with ASD in discussions of their condition and possible interventions.