Autism community priorities in diverse low-resource settings: A country-wide scoping exercise in India.
Ipsita Dey, Sreerupa Chakrabarty, Rajanya Nandi and 6 others
PMID 36999343WHAT IT FOUND
Indian autism families ranked self-help skills as the top priority for training and speech and language therapy as the most needed intervention.
Mental health counselling was second, but parents sought it for themselves rather than their children.
Key findings
01Self-help skills were ranked as the highest priority for training, viewed as the foundation for all other skills.
02Speech and language therapy was the top-ranked intervention, followed by mental health counselling.
03Parents prioritised mental health counselling for themselves to better support their children, rather than for the children directly.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The survey was online, excluding families without internet access, which is estimated at 50% of India. Snowball sampling led to an over-representation of parents and under-representation of autistic self-advocates. The study relied on subjective reports of support needs without objective data. The survey design was not suitable for adults with few or no words. Qualitative analysis was limited to reviewing comments rather than a formal systematic analysis.
Declared interests
The authors declared no potential conflicts of interest. Funding was provided by the India Autism Centre Research Foundation, Medical Research Council UK, and the European Research Council.
The easy way to misread this
Do not interpret the low ranking of vocational and academic skills as a lack of importance for long-term outcomes. Parents explicitly stated these were lower priority because they focused on immediate needs for young children, and some felt existing vocational training did not match individual strengths.