In India, about 1 in 85 children ages 6-9 and about 1 in 125 children 3-6 years old are diagnosed with ASD (Juneja & Sairam, 2018). Despite the common occurrence, ASD and other disorders are largely taboo. Many parents deny the diagnosis and instead rely on cultural and religious beliefs, such as gender-based delays to explain “unusual” behaviors or believe that the condition is a curse that only religious rituals can cure. Many of those with ASD tend to live in more rural areas. This is often associated with very rudimentary and uninformed interventions. In the 1980s, the diagnosis was very rare and for the most part, unheard of. Most children with ASD were incorrectly diagnosed with “mental retardation” or “minimal brain dysfunction” or were regarded as having learning and behavior problems. Many of these children did not attend school because their parents were embarrassed and if they did attend, they were sent to a school for children with mental retardation and were provided with uniform intervention techniques, which were usually ineffective. Many teachers were frustrated with the childrens’ behavior and would use corporal punishment or prevent them from continuing in school. At that time, India had no law declaring that children with special needs should be provided with special services.
A New India
In 1991, Action for Autism (AFA) was founded as a parent support group and focused on raising awareness about ASD around India. In 1994, a school called Open Door started specifically for children with ASD and provided counseling for parents. A periodical called Autism Network was also published that same year and was distributed to many parents and professionals. In 1994, AFA created a Teacher Training Programme to help train professionals to teach children with ASD. AFA also created awareness films and campaigns, lobbied to government institutions and lawmakers, conducted numerous research studies, and was a founding member of the World Autism Organization.
In 2018, India passed a bill (National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Bill) that allowed individuals with ASD to live independently and facilitated equal opportunities for them in society. Numerous schools specifically for children with ASD have sprouted all over India, including the Centre for Autism and other Disabilities Rehabilitation Research and Education (CADRRE) in my native state of Kerala, which focuses on family-centered holistic intervention and cares for children with ASD from the time of diagnosis through adulthood, acting as a place of education, research, and assisted living. Significant progress has been made in the past two decades. However, educating and providing adequate services for those in rural areas continues to be a challenge and will require tackling the stigma about ASD and other disorders that exists worldwide.
Juneja, M., & Sairam, S. (2018, March 15). Retrieved May 17, 2020, from http://www.smgebooks.com/autism/chapters/AUT-18-12.pdf
To read more about AFA and explore a more detailed history of ASD in India, check out http://www.autism-india.org/.