Caregiver Perceptions of Autism and Neurodevelopmental Disabilities in New Delhi, India

Georgia Lockwood Estrin (), Supriya Bhavnani, Rashi Arora, Sheffali Gulati and Gauri Divan
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Georgia Lockwood Estrin: School of Psychology, University of East London, Arthur Edwards Building, Water Lane, London E15 4LZ, UK
Supriya Bhavnani: Child Development Group, Sangath, Bardez 403501, India
Rashi Arora: Child Development Group, Sangath, Bardez 403501, India
Sheffali Gulati: Center of Excellence and Advanced Research on Childhood Neurodevelopmental Disorders, Child Neurology Division, Department of Pediatrics, All India Institute of Medical Sciences, New Delhi 110029, India
Gauri Divan: Child Development Group, Sangath, Bardez 403501, India

IJERPH, 2023, vol. 20, issue 7, 1-13

Abstract: Evidence suggests that parenting an autistic child or a child with neurodevelopmental disabilities can be more challenging than parenting a child meeting their developmental milestones, especially when there is a dearth of support services, such as in low- and middle-income countries (LMICs). Despite the majority of the world’s children residing in LMICs, there are limited studies examining the understanding of developmental disorders and autism in these regions. We therefore aim to investigate perceptions of autism and developmental disabilities in caregivers of children in an urban setting in New Delhi, India. Thirteen semi-structured interviews with parents/caregivers of children were conducted in three groups: (1) caregivers with a child with a diagnosis of autism spectrum disorder (ASD); (2) caregivers with a child with a diagnosis of intellectual disability (ID); (3) and caregivers with children meeting their developmental milestones. Transcripts were analysed using framework analysis. Three themes on the impact of cultural and contextual factors on the recognition, interpretation, and reporting of autistic symptoms are discussed, and additional themes focus on the impact of diagnosis and family support. Our findings highlighted a vital need for greater community awareness and recognition of autism in India, for example through community and healthcare training, which may help to reduce stigma and facilitate wider family support.

Keywords: autism; neurodevelopment disability; caregiver perspectives; low- and middle-income countries (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2023
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