Navigating the Autism Journey: Parental Experiences, Barriers and the Role of Early Intervention in India.

This study looked at what it's like for parents raising autistic children in India. Researchers talked to 11 parents and found they face many challenges: getting a diagnosis takes too long, there isn't enough awareness about autism, and support services are hard to find or afford. Parents struggled to help their children at home and wanted more support that fits their culture. The findings show we need better early screening, peer support groups, and more accessible services for families.

This qualitative study examined experiences of 11 parents of children with autism spectrum disorder (ASD) in India through focus group discussions and thematic analysis. The research identified systemic barriers including diagnostic delays, limited public awareness, and inconsistent service availability that contribute to parental stress. Parents reported difficulties implementing home interventions and accessing affordable professional support. While some acknowledged benefits of available services, many highlighted gaps in culturally appropriate interventions.

Sentiment analysis revealed mixed parental experiences across themes. The study advocates for structured, inclusive ASD support including digital tools, peer networks, early screening programs, and culturally responsive interventions to improve family outcomes.

Findings suggest need for comprehensive system changes including early screening programs, standardized diagnostic protocols, culturally adapted interventions, and enhanced parent support. Digital tools and peer networks may improve service accessibility. Policy frameworks should address affordability and service consistency to reduce parental stress and improve family outcomes.

Small sample size of 11 parents limits generalizability. Study focused only on Indian context, so findings may not apply to other cultural settings. Qualitative design provides rich data but cannot establish causal relationships. No comparison group or longitudinal follow-up to assess intervention effectiveness.

Parents of children with autism spectrum disorder (ASD) often encounter significant challenges in accessing timely diagnosis and appropriate support services. This study explores the experiences of parents navigating autism-related services in India, focusing on barriers to diagnosis, post-diagnosis support and the role of early intervention. Using a qualitative research design, we conducted focus group discussions with 11 parents of children with ASD and analysed the data using thematic analysis. Sentiment analysis and chi-square statistical testing were also applied to assess parental perspectives across key themes.

The findings reveal systemic delays in diagnosis, limited public awareness and inconsistencies in service availability, which contribute to heightened parental stress. Parents expressed difficulties in implementing intervention strategies at home and reported challenges related to accessibility and affordability of professional support. Whereas some parents acknowledged the benefits of available services, many highlighted gaps in tailored, culturally appropriate interventions. Sentiment analysis showed a relatively even distribution of positive, neutral and negative sentiments across themes, indicating the complexity of parental experiences.

This study underscores the need for a more structured and inclusive approach to ASD support, including digital tools, peer support networks and early screening programmes. Strengthening policy frameworks and expanding accessible interventions can enhance the effectiveness of autism services and improve outcomes for families. These findings contribute to the growing body of research advocating for parent-inclusive, culturally responsive autism support systems.