Raising a Child with Autism in India: Journey of Parents' over Decades

Background: The lifelong nature of autism brings in a plethora of new experiences for the parents, making parenting a child with autism a challenging experience. How do parents usually experience while parenting a child with autism in India? What insights do they gain over the years? What would be their advice to parents of children who are now receiving a diagnosis? While they have been a parent for almost two decades or more, what do they think is happening for families receiving a diagnosis now? What government policies are required? This first study on adults with autism in India answers many such questions from the perspectives of parents of adults with autism.

Objectives: The present paper seeks to gain insight into parent’s perspective on raising a child with autism.

Methods: 52 families (54 adults) living in New Delhi and NCR were interviewed in their homes. The home visits lasted for 2.5 – 5 hours. Using a range of instruments including semi structured interviews, standardized questionnaires, and home observations, parents responded to a variety of topics related to their experience of raising a child with autism and their needs.

Results: Parents spoke about the different actions that parents can take themselves; the different parenting approaches that may be used as well the key systemic changes required in low and middle income countries with limited resources such as India.

Conclusions: This is one of the first studies that informs practice and policies in India by highlighting parent’s perspectives of key needs of the families of autistic individuals. The study has significant implications in generation of additional and improvement of existing services and provides valuable information to parents, particularly those of children newly diagnosed with ASD.

This study highlights the need and directions for new and improved services to cater to the needs of individuals with autism.