As April 2nd marks World Autism Awareness Day, there is a prime opportunity to talk about autism in India – a health issue that is too often overlooked.
An estimated three million people live with autistic spectrum disorder (ASD) on the Indian subcontinent according to a 2018 paper. That report notes that “there has been an increase in the prevalence of autism in India over the years. Once considered rare, the current understanding is that autism is in fact one of the more common developmental disabilities.”
Autism in India and the data gap
When it comes to autism, and neurodevelopmental disorders (NDDs) as a whole, there is a data gap. As previously reported by Health Issues India, neurodevelopmental disorders such as autism are believed to affect approximately one in eight Indian children according to one study. Yet even this may not capture the full extent of NDDs in India.
As we noted at the time, “the findings stand in marked contrast to those of the 2011 census, which posited the prevalence of NDDs at just 1.1 percent among those aged 0-4 and 1.5 percent among those aged 5-9. Concerningly, the new research’s significantly higher estimates still may not be capturing the full scope of NDDs cases in India.”
The study itself noted that its findings ought to be considered “a conservative estimate. [The] actual burden might be higher due to limitations of the study.” As we noted, “such limitations included that the study sample was unrepresentative of children with a history of stunting and/or low birth weight (LBW). There was also a 15.6 percent refusal rate. As such, one can expect the actual prevalence of NDDs to be much higher than what the study estimates.” One study has suggested the prevalence of NDDs among children aged between two and nine could be as high as almost twelve percent.
Aligned with this trend of reporting concerning NDDs, data about the prevalence of autism tends to vary. For example, a 2018 study suggested that around one in ten Indian children below the age of ten are affected by autism. This figure was almost forty times that suggested by a study conducted the previous year which analysed 11,000 schoolchildren in Kolkata, pinpointing the prevalence of autism as being 0.23 percent. Given the sheer variability of these figures, an accurate estimate is all but impossible.
In 2019, a systematic review of four studies concerning ASD in India – “one [which] had studied both urban and rural populations, and…three [which] had studied the urban populations only” – found “a pooled percentage prevalence of 0.11” in the rural environment among children aged between one in eighteen. In the urban environments, it found a pooled percentage prevalence of 0.09 among children up to fifteen years.
However, that study noted that “the scarcity of high-quality population-based epidemiological studies on ASD in India highlights an urgent need to study the burden of ASD in India. The proper acquisition of data related to the prevailing burden of ASD in India would lead to a better development of rehabilitative services in our country.”
The need for services and understanding
The provision of high-quality services to those affected by neurodevelopmental disorders such as autism and their families is vital for their wellbeing. However, writing in 2016 in The DailyO, Archana Nayar – whose son lives with autism – wrote that “interventions in the country are rudimentary, unprofessional and ineffective.” Stigma, she said, fuels the problem: “the problem with mental disability in India is that it is still considered a taboo. We are living in a society that doesn’t understand mental disorders, and we have professionals who do not know what to do.”
This is not to say that there are not a multitude of organisations working on the subject of autism in India. Nayar herself is the founder of the Autism Centre for Excellence (ACE) – one she described as “an initiative of The Special Child Trust to transform autism education landscape in the country, ACE creates a data-driven programme based on the principles of Applied Behaviour Analysis (ABA) for children between three to 15 years on the autism spectrum.” ACE is not alone, with a plethora of organisations on raising awareness of autism in India and promoting understanding while working to improve the lives of children and adults alike who live on the spectrum.
World Autism Awareness Day ought to be a call to action: to push back against stigma, to provide support to those living with autism in India, and to dispel myths and promote greater knowledge and understanding about what autism is, what it isn’t, and to ensure that those living with the condition are not stigmatised and ostracised, but included and allowed to maximise their potential. When the awareness observance is over, a continued push is needed by all stakeholders at all levels to sustain the push to ensure that autism in India – and those it affects – are overlooked no more.