“I was Confused … and Still am” Barriers Impacting the Help-Seeking Pathway for an Autism Diagnosis in Urban North India: A Mixed Methods Study

Article

Bhavnani, S., Lockwood Estrin, G., Arora, R., Kumar, D., Kakra, M., Vajaratkar, V., Juneja, M., Gulati, S., Patel, V., Green, J. and Divan, G. 2022. “I was Confused … and Still am” Barriers Impacting the Help-Seeking Pathway for an Autism Diagnosis in Urban North India: A Mixed Methods Study. Journal of Autism and Developmental Disorders. 52, p. 1778–1788. https://doi.org/10.1007/s10803-021-05047-z
AuthorsBhavnani, S., Lockwood Estrin, G., Arora, R., Kumar, D., Kakra, M., Vajaratkar, V., Juneja, M., Gulati, S., Patel, V., Green, J. and Divan, G.
Abstract

Timely recognition of autism in children is integral to improve developmental outcomes. This study used mixed-methods (84 case-registers and 20 in-depth interviews with caregivers of children with a diagnosis of autism) to explore the extent to which the nature of parental concerns and prior knowledge of developmental disorders impact the time between symptom recognition and autism diagnosis, and the contextual family, societal and health-system related factors that impede the autism help-seeking pathway. Lack of awareness of age-appropriate child developmental milestones, apparent amongst the community and health professionals, contributed to a 1.5-year delay between parental concerns and autism diagnosis. Recommendations to shorten this help-seeking pathway include harnessing the potential of non-specialist workers to increase awareness and enable developmental monitoring of young children through scalable tools.

JournalJournal of Autism and Developmental Disorders
Journal citation52, p. 1778–1788
ISSN1573-3432
0162-3257
Year2022
PublisherSpringer
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Anyone
Digital Object Identifier (DOI)https://doi.org/10.1007/s10803-021-05047-z
Publication dates
Online20 May 2021
Publication process dates
Accepted25 Apr 2021
Deposited13 May 2025
Copyright holder© 2022 The Authors
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