Understanding autism and its treatment: The child's perspective

Area of Science:

• Pediatric Psychology
• Developmental Neuroscience
• Clinical Child Psychology

Background:

• Limited research exists on the perspectives of children with autism spectrum disorder (ASD) regarding their needs and challenges.
• Existing studies primarily focus on parental and professional viewpoints.

Purpose of the Study:

• To investigate how children with ASD perceive their condition.
• To understand children with ASD's comprehension of intervention aims.

Main Methods:

• Qualitative interviews with 19 children and adolescents (ages 5.7-14.2) diagnosed with ASD.
• Used direct and projective open-ended questions to explore perceptions of strengths, challenges, and a novel ASD treatment.
• Employed interpretive content analysis for interview data and extracted medical records.

Main Results:

• Children discussed embodied sensations, feelings, and concepts of 'normality' versus 'disability'.
• Awareness of ASD diagnosis and symptoms varied significantly; most children did not understand the goals of their educational or therapeutic interventions.
• Only one participant explicitly named their diagnosis and detailed its consequences.

Conclusions:

• Children with ASD are cognizant of their unique emotional and behavioral difficulties.
• They are often excluded from patient information processes and lack understanding of intervention objectives.
• Developmentally appropriate methods are needed to involve children with ASD in discussions about their condition and treatments.