Parent Mediated Interventions for Children with Autism across India: A Qualitative Study

Abstract

Background: Lifelong intervention is the mainstay of rehabilitation for individuals on the autism spectrum. The Lancet Commission on care and clinical research on autism has noted the prohibitive cost of intervention services in Low Middle Income Countries and has recommended active involvement of parents in the intervention process. However, there appear to be limited resources for parents to train themselves. Objective: A qualitative study to understand the state of Parent Mediated Interventions across India. Method: The study was carried out in two phases. In the first phase, professionals from centers across India were interviewed to understand the methods followed in their centers. In the second phase, focus group discussions were conducted with parents of children on the autism spectrum to understand their needs and challenges in working with their children. The findings from these two phases were then presented to an experienced professionals to corroborate the results. Results: Parent-mediated interventions were found to be limited and relying on manuals published in the West. Parents of children above the age of six continued to face challenges in teaching communication and managing difficult behaviors. Conclusion: Empowering parents by educating them right from the time of diagnosis of the child will ensure better adult outcomes among individuals with autism spectrum disorders.