There are many studies in limited survey population that give varying estimates of autism incidence. Lack of statistics hobbles policymaking
Exactly 20 years ago, Dustin Hoffman played an autistic man with a way with numbers in the cult hit Rainman, bringing a then little known condition called autism to the forefront of public discourse.
Two decades on, India still does not know how many people in the country suffer from the disease or whether they get the educational and other facilities needed for these special people to realise their full potential. This is a hard fact to wake up to this World Autism Day.
Autism is one of five developmental disorders included under the umbrella of the
Pervasive Developmental Disorders. A disorder of the nervous system, Autism is characterized by deficits in social interaction and communication, and unusual and repetitive behaviour. Cognitive abilities in people with autism vary between those with average to above average intelligence, to borderline and mild mental retardation, and others who function within the moderate to profoundly mentally retarded range.
“There have been no epidemiological studies of autism conducted in India, nor in any comparable region of the world in order to provide a definitive estimate of either prevalence or incidence.”
The Rehabilitation Council of India puts the prevalence of autism between 1 in 500 (2/1,000) to 1 in 166 children. This means 2,160,000 people in India suffer from Autism Spectrum Disorder (ASD). The incidence rate – that is rate of occurrence of new cases – is 1 in 90,666 or 11,914 people in India. Incidence extrapolations for India for Autism: 11,914 per year, 250 per month, 57 per week, 8 per day, 1.4 per hour.
RCI which is a body under the ministry of social justice and welfare, also admits: “There have been no epidemiological studies of autism conducted in India, nor in any comparable region of the world in order to provide a definitive estimate of either prevalence or incidence. Most estimates are based on population, given that significant differences in prevalence have not generally been observed in different regional areas. Although, there are no studies from India, the numbers are likely to be similar. ”
Last year a study published in the Journal of Neurosciences in Rural Practice that conducted a survey in 28,070 children in rural, urban, and tribal areas of Himachal Pradesh put the autism incidence at 0.15%. It concluded: “The true estimation of prevalence of ASD in India will go a long way in improving policies regarding developmental disabilities.”
It is non government initiatives such as Action for Autism and the Tamanna School that have, in the absence of a consolidated national policy, truly contributed to the development of a support network for families of people living with autism.
