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

Supriya Bhavnani, Georgia Lockwood Estrin, Rashi Arora, Divya Kumar, Minal Kakra, Vivek Vajaratkar, Monica Juneja, Sheffali Gulati, Vikram Patel, Jonathan Green, Gauri Divan

Research output: Contribution to journalArticlepeer-review

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.
Original languageEnglish
JournalJournal of Autism and Developmental Disorders
Early online date20 May 2021
DOIs
Publication statusPublished - 20 May 2021

Keywords

  • Autism Spectrum Disorders
  • Delay
  • Diagnosis
  • Help-seeking pathway

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