Children with Autism Spectrum Disorder (ASD) Perspectives on their Needs and Challenges

Strategic Insights -

Research conducted by Yael Karni-Visel, Nehami Baum, and Mitchell Schertz at Bar Ilan University in Ramat-Gan, Israel, aimed to examine how children with ASD understand their condition and the aims of the interventions they undergo. The study involved interviewing 19 children and adolescents with ASD, aged 5.7-14.2 years, who were formally diagnosed and had verbal communication skills. The children's parents completed questionnaires providing sociodemographic details, awareness of ASD diagnosis, and disability levels. The children's responses revealed a lack of understanding of the educational and therapeutic aspects of the goals set for them, with some children unaware of their diagnosis or symptoms. The research highlighted the need for involving children with ASD in discussions of their condition and possible interventions, adopting developmentally and emotionally adaptive approaches.

Key Takeaways:

  • Children with ASD are aware of their unique emotional and behavioral challenges, but are often excluded from the process of patient information provision.
  • The children's perspectives on their strengths and challenges revealed a lack of understanding of the educational and therapeutic aspects of the goals set for them.
  • Most children lacked an understanding of their diagnosis and symptoms, with only one boy names his diagnosis and described its consequences in detail.
  • The study suggested the need to explore developmentally and emotionally adaptive ways to involve children with ASD in discussions of their condition and possible interventions.
  • Children with ASD use embodied sensations and feelings to describe their experiences, discussing 'normality' vs. 'disability.'
  • The research emphasized the importance of addressing the emotional and behavioral challenges faced by children with ASD.

Statistics:

  • 19 children and adolescents with ASD were interviewed in the study.
  • The children's ages ranged from 5.7 to 14.2 years.
  • The children had borderline to high intelligence (range 70-140)
  • 18 out of 19 children lacked understanding of the educational and therapeutic aspects of the goals set for them.
  • 1 boy out of 19 children was aware of his diagnosis and described its consequences in detail.

Sources:

  • Karni-Visel, Y., Baum, N., & Schertz, M. (2024). Understanding autism and its treatment: The child's perspective. Social Science & Medicine, 354, 117066.
  • NewsRx. Bar Ilan University Reports Findings in Autism (Understanding autism and its treatment: The child's perspective). Pediatrics Week. July 20, 2024; p 71.
  • Elsevier. Social Science & Medicine. The Boulevard, Langford Lane, Kidlington, Oxford OX5 1GB, England. (www.elsevier.com; www.journals.elsevier.com/social-science-and-medicine/)