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

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.

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

“…Full transcripts from the in-depth interviews were analysed using framework analysis. This approach was taken due to it being widely used in healthcare research [ 11 , 24 ]. Our coding framework was theoretically driven and based on Leeuw et al’s [ 9 ] conceptual framework.…”

“…This is important because differences in sociocultural norms between contexts can significantly impact the process of identifying symptoms and help-seeking, diagnosis and health services for autism and developmental disorders across the globe [ 8 , 9 , 10 ]. Moreover, low awareness about autism in the local community has been associated with increased levels of stigma and parental stress, as well as reduced support for families, which in turn may increase the likelihood of a delay in diagnosis and help-seeking [ 2 , 11 ]. A greater understanding of the experience of families of autistic children from LMICs is therefore fundamental to the development of improved access to healthcare in underserved populations.…”

Diagnosing autism in low‐income countries: Clinical record‐based analysis in Sri Lanka

“…As an example, the interpretation for speech delay would be due to "inauspicious timing of the first hair cut." Further, beliefs such as "boys usually start speaking late" might be due to lack of awareness on children reaching their growth milestones (Bhavnani et al, 2021).…”

“…The cultural beliefs such as autism being “the western disease” and supernatural explanations given in de Leeuw et al (2020) are common in SL too. As an example, the interpretation for speech delay would be due to “inauspicious timing of the first hair cut.” Further, beliefs such as “boys usually start speaking late” might be due to lack of awareness on children reaching their growth milestones (Bhavnani et al, 2021).…”

Perspectives of key stakeholders on educational experiences of children with autism spectrum disorders at the Kenyan Coast

“…An additional complexity to diagnosing ASD in SSA is a medical model limiting diagnosis to few medical experts, such as psychiatrists and psychologists (Abubakar et al 2016a ). In countries like India, teachers with master’s level education are trained to use screening and diagnostic tools to make reliable diagnoses (Bhavnani et al 2021 ). In order to optimise the school experience and outcomes of children with ASD, there is a need for evidence-based identification and programmes.…”