Parental care-seeking pathway and challenges for autistic spectrum disorders children: A mixed method study from Bhubaneswar, Odisha

BACKGROUND: Autism spectrum disorder (ASD) is globally a major cause of childhood disability. It is estimated that in India approximately 1.7–2 million children are affected with this disorder. Early diagnosis is an important criterion to start early interventions for ASD treatment. However, for every childhood problem that receives a medical diagnosis, there is a period between a parents’ first recognition of unusual symptoms and the eventual diagnosis. Several factors influence this initial symptoms recognition and final diagnosis. AIMS: The present study attempts to decipher parents’ perception regarding ASD and to understand the early signs of ASD recognition among parents, treatment-seeking pathways adopted their experiences and challenges in the overall process. SETTING AND DESIGN: A facility-based cross-sectional study was undertaken at Bhubaneswar, Odisha. METHODOLOGY: Parents of children with ASD were recruited for this study. Seventy-six interviews were conducted, and the data were analyzed. RESULTS: The major symptom identified by the majority of the parents was social difficulty among their children. Maximum parents had not heard about ASD before their child was diagnosed with the disorder. Parents consulted multiple professionals or traveled long distances to confirm the diagnosis. Child psychiatrists often confirmed the diagnosis and referred patients to rehabilitation centers. CONCLUSION: Lack of awareness, unavailability of services, and stress contributed to the delay in ASD diagnosis. There is a need for designing proper awareness and genuine center for the treatment. Similarly, referral and counter-referral mechanism is also required to be established to save delay in diagnosis and initiate prompt treatment in the field of ASD.