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"I don't know what that is" India's ignorance on autism

“I don’t know what that is.”

This is the response I received, repeatedly, when asking Jaipur locals if they knew what autism is.

From a school principal to well educated university students, very few people were aware of the condition at all. Despite this, when describing what the autism spectrum is and how it affects those with the condition, the response was instant recognition.

Oh they knew someone like that.

There were kids like that in school.

Right, those people like that.

So if a proportion of the people in India, do not know of a lifelong developmental condition that affects an estimated 21.7 million worldwide, what is happening for those with autism in India?

Research into the non-government organisations of India revealed that a variety of special schools offered support to autistic children. Autism support groups were also able to be found quite easily, but did not respond for comment on the issue of awareness.

So that bares the question, if support groups and NGOs providing education to low functioning autistic children exist - how is it that disorders such as autism, ADHD, ADD and similar are not common knowledge within standard public education?

This raises concern about what is happening to the children that fall under the radar.

A child offered shelter, support and education at Aashray Children's Home in Jaipur, India.

"People prefer to just not talk about it," says Disha Gupta, an Amity University student.

She's referring to conditions considered 'mental'. There is still a significant stigma surrounding conditions that make you different socially.

"If you're different socially, people just think you're deserved [spoilt] and they ignore you," Disha says.

This may explain why the country’s first rigorous estimate of autism rates was only conducted just this year.

Revealing that roughly 23 of every 10,000 children in India have autism.

But how reliable can this data be, if a vast number of well educated adults had never even heard of the condition and parents would rather avoid the stigma surrounding having a child considered different?

This would undoubtedly limit the amount of diagnoses.

"They need somewhere where they get constant 24-hour care," says Gurinder Virk, founder of RAYS Children's Home, of children with autism.

But what about the high functioning autistic children, lost amongst a system that shuns their difference and provides no support within the basic education system.

Whilst visiting Aashray Children's Home in Jaipur, India, we came across a child who had additional needs, his specific condition could only be confirmed by a medical professional. But he was non-verbal, could not respond to direction and was often scolded by the staff in the home - both verbally and physically.

Aashray Children's Home is an orphanage for HIV positive children, so this child was also facing that battle.

I asked the staff if they had methods of support for children with additional needs, whether for learning, interacting or due to a past of abuse.

"We have no children like that here," she said.

Imagine being considered 'spoilt' for a lifelong development disorder that you did not choose to have.

Imagine the people who are meant to be caring for you, ignoring your condition for reasons unknown. Because of the stigma, the extra cost or perhaps because they genuinely don't know about it.

Whichever it is, something needs to be done. Attitudes need to change, awareness needs to be made and the weight of this should not be solely on non-government organisations.

To learn more about autism support in India, head to NGO Autism India and most importantly - talk about it, raise awareness and let's fight against the stigma of difference.

By Maegan Gillespie

Created By
Maegan Gillespie
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