{"title":"Navigating the Autism Journey: Parental Experiences, Barriers and the Role of Early Intervention in India","authors":"Rahul Bharat, Uzaina Uzaina, Kakoli Das, Rincy Baptish","doi":"10.1002/jdn.70029","DOIUrl":null,"url":null,"abstract":"<div>\n \n <p>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.</p>\n </div>","PeriodicalId":13914,"journal":{"name":"International Journal of Developmental Neuroscience","volume":"85 5","pages":""},"PeriodicalIF":1.7000,"publicationDate":"2025-07-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"International Journal of Developmental Neuroscience","FirstCategoryId":"3","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1002/jdn.70029","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"DEVELOPMENTAL BIOLOGY","Score":null,"Total":0}
引用次数: 0
Abstract
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.
期刊介绍：
International Journal of Developmental Neuroscience publishes original research articles and critical review papers on all fundamental and clinical aspects of nervous system development, renewal and regeneration, as well as on the effects of genetic and environmental perturbations of brain development and homeostasis leading to neurodevelopmental disorders and neurological conditions. Studies describing the involvement of stem cells in nervous system maintenance and disease (including brain tumours), stem cell-based approaches for the investigation of neurodegenerative diseases, roles of neuroinflammation in development and disease, and neuroevolution are also encouraged. Investigations using molecular, cellular, physiological, genetic and epigenetic approaches in model systems ranging from simple invertebrates to human iPSC-based 2D and 3D models are encouraged, as are studies using experimental models that provide behavioural or evolutionary insights. The journal also publishes Special Issues dealing with topics at the cutting edge of research edited by Guest Editors appointed by the Editor in Chief. A major aim of the journal is to facilitate the transfer of fundamental studies of nervous system development, maintenance, and disease to clinical applications. The journal thus intends to disseminate valuable information for both biologists and physicians. International Journal of Developmental Neuroscience is owned and supported by The International Society for Developmental Neuroscience (ISDN), an organization of scientists interested in advancing developmental neuroscience research in the broadest sense.
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