"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 and 8 others
PMID 34014464WHAT IT FOUND
Parents and teachers first noticed concerns when children were about 2 years old, but diagnosis often did not come until age 4.
Health professionals and family frequently advised waiting for the child to catch up, delaying referral.
Key findings
01On average, parents or teachers first noticed developmental or behavioural concerns when children were about 2 years old, but autism diagnosis was typically received at 4 years.
02Both family members and health professionals, including paediatricians, frequently advised parents to wait and watch, believing the child would catch up.
03Children with comorbid seizures received an autism diagnosis significantly later than those without seizures.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for SLPs
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What it does not show
Participants were recruited from premier tertiary hospitals in one city, so findings may not apply to rural areas or other regions. Data on age at concern and diagnosis was collected retrospectively, which is subject to recall bias. The study did not collect information on socioeconomic status, which is a known determinant of healthcare access.
Declared interests
Funding was provided by the Medical Research Council, the Department of Science and Technology (Government of India), and the Wellcome Trust. No conflicts of interest were declared by the authors.
The easy way to misread this
Do not assume that a child's delayed diagnosis reflects a lack of parental concern or awareness. The study found that parents often raised concerns early but were actively discouraged from seeking immediate specialist help by both family members and health professionals who advised them to wait for the child to catch up.