- A conservative estimate based on pooling the results from different studies suggests that well over one crore Indians are on the autism spectrum.
- While biochemical pathways involved in core autism symptoms are unlikely to be different between cultures, there are notable cultural differences in who gets a clinical diagnosis of autism.
- The majority of children with an autism spectrum diagnosis within the United States and the United Kingdom are likely to be verbal, with average or higher than average IQ, and attending mainstream schools. In contrast, a significant majority of children in India who get a clinical diagnosis of autism often also have intellectual disability, and limited verbal ability.
- This difference is likely to be driven by a range of sociological factors, such as access to appropriate clinical expertise, the allowance of provisions for inclusion in mainstream schools, as well as availability of medical insurance coverage for autism interventions.
- Autism is assessed behaviourally, and behavioural assessment tools (i.e. questionnaires or interviews with professionals) are the starting point for all research and clinical work on autism.
- Yet, most of the widely used autism assessment tools have limited availability in Indian languages.
- While some of the more widely used tools have been translated and validated locally, recent years have seen a rise in the development of indigenous autism assessment tools.
- Crucially, assessment must not remain limited to measures of behaviour alone; autism is increasingly viewed as a systemic condition.
- Most available autism assessment tools need to be administered by a specialist mental health professional.
- According to the latest estimates, India has less than 10,000 psychiatrists, a majority of whom are concentrated in big cities.
- While the number of mental health professionals continues to grow, the current gap between demand and supply cannot be met directly by the specialists alone.
- Delays in interventions can be costly for neuro-developmental conditions such as autism, given the importance of critical periods in brain development.
- Early interventions are associated with the best outcomes.
- Sustainable public health pathways need to be developed such that they do not depend critically on a confirmed diagnosis from a specialist.
- Need for an all India programme
- The overarching need of the hour is to develop a national programme on autism, to link researchers, clinicians, service providers to the endusers in the autism community in India.
- A programme of this scale needs three essential components that are joined up: assessment, intervention, and awareness.
- Research needs to focus on developing and refining appropriate assessments, as well as designing efficient implementation pathways.
- Simultaneously, the clinical and support service workforce needs to be expanded by training non specialists such that a stepped care model can be rolled out effectively across the nation.
- Finally, large scale initiatives to build public awareness can serve to reduce stigma associated with autism and related conditions.
- Crucially, a national programme needs to be informed by consultation with different stakeholders, with a primary focus within the Indian autism community.
