Society, Stigma and Scams
When family and friends found out that Samuel had Asperger’s Syndrome, people gossiped a lot about Boaz and her family. Boaz said she initially had an “immature reaction”, getting angry, mentally cutting them off and choosing to withdraw into her world with her children.
“First is you're disappointed,” Boaz said about those initial days after Samuel was diagnosed with Asperger’s. “You're sad. Then it's like, 'Why me?’ and all that stuff, which is natural. I will not believe it if a parent tells me that they were filled with joy. Because I have heard people say it and I don't believe them. And then you think of the effort that you have to put in.”
The Stigma
Society in India tends to marginalize people with mental disabilities. In fact, there is so much stigma surrounding differently abled children that parents don’t even want to hear that their child has Autism or Down’s syndrome, according to Anbumani.
“Like, even they don't like the diagnosis actually,” she explained. “Once the child is diagnosed, people think that the society will keep them separate or something like that so most parents, even [if] they’re diagnosed, they don't disclose to any other person.”
Anbumani said that parents often come to her saying their child has a delay in development and need her help, but she can clearly tell if a child has Autism.
When I visited Anbumani’s clinic, I witnessed a child learning to write the alphabet with the mother sitting in same room, keeping a close eye on her son. After the child’s session was done and they left, Anbumani told me that she knows that the child has Autism, but whenever she tries to tell the mother, she refuses to hear it.
“At least before accepting they will visit at least 10 doctors,” Anbumani said. “Because all 10 will give different different different opinion.”
Shibila Anbumani
This is exactly what Boaz did too, taking Samuel to multiple places with inconclusive diagnoses before they realized and accepted that it was Asperger’s.
In fact, even if the parents know that their child is differently abled, they sometimes won’t even let their school know, for fear of the school separating their kid from their other classmates, according to Anbumani.
Mihir Alexander Samuel with his brother Zubin
“You don't want to disclose your child's condition to others because you don't want your child to be labeled,” Boaz said. “Right? Because a lot of people readily label your child. And they talk - even within the family, they talk crap about your child.”
Sadly, it appears that Samueal was aware that his father spoke ill of him, and there were family members that looked down on him just because he has Asperger’s. Boaz raised Mihir like a single parent from a very young age.
“People think if differently-abled child is there means something is grossly wrong with the family or something like that,” Anbumani said.
Anbumani started her clinic in Chennai in July 2017. But before that, she worked in Mumbai for 10 years.
During Anbumani’s time in Mumbai, she even came across educated parents who said they have a differently abled child because of a sin they committed in a past life, or the child is like this because of a curse that runs in the family.
One client Anbumani narrated a story of was the superstitious mother of a child with Down’s Syndrome in Mumbai. The woman lived in a flat. According to Anbumani, she and her neighbors were all well-educated. But whenever the lady came out into the corridor with her child, everyone would immediately go into their houses and lock their doors.
“They don't even want to see that lady’s face, she used to tell me,” Anbumani said. “So I used to ask them why is it like that.”
The explanation she got was that the lady and her neighbors belonged to a particular community that considered it a sin to have a child with Down’s Syndrome and other such disabilities.
“They never know this is a gene problem,” Anbumani said. “So these kind of things are still there.”
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Apart from the social segregation and superstitions about the differently abled, there are also the labels.
“Any normal child even with learning disability is also considered as a mental child, mentally challenged child,” Kannan said. “That is very depressing.”
She expressed her dismay about children who are called “mentally challenged” just because they aren’t as adept in academics as their neurotypical peers.
Children who aren’t good at academics are often talented in other things, like singing, dancing, athletics, or even unusual things.
“But still, there is a stigma,” Kannan said. “That these are useless people. But actually they can perform a lot. We do a lot of activities for these children.”
Doctor Shopping: The Search for a “Cure”
With all that stigma, parents like Boaz are afraid of their children being marginalized in society. So they often set off to try to find a “cure”.
People think that Autism and Down’s Syndrome are diseases that can be cured, according to Sriram, and they don’t attribute it to a neurological problem.
“It is trainable, but not curable,” Sriram explained.
People go from doctor to doctor, trying to find a cure, and this leaves room for a lot of scams to con people into giving their money to people who claim to be able to “fix” their child.
So why isn’t there any media attention given to these scams?
One of the reasons Sriram mentioned was money and power playing a role. The other reason is that a lot of these “cures” are alternative therapy.
“Like there is a therapy in some part of remote village in Kerala for autism,” Sriram said. “They'll bury the child inside the mud and only the head is outside for hours together.”
This is the sort of thing you normally see in cartoons.
“Like, it is happening,” she continued. “And believe me, parents go and stay there for 20 days, 30 days. And it's so crude - they'll come and tell me they have a hammer like this, and they insert the child in the mud, and keep the head, and some oil or something they apply, and they just tak-tak-tak-tak-tak-tak.”
Sriram mimicked the sound of knocking on a person’s head.
Sujatha Sriram
When parents have children on the extreme side of the Autism spectrum, like if they’re nonverbal and have lots of sensory issues, Sriram explained, parents are just looking for a solution. So it’s like shopping for them, trying to find what will work, and they blow lakhs of rupees (the equivalent of thousands of US dollars) on different kinds of treatments like homeopathy and ayurveda.
Another reason these scams don’t garner media attention is that parents feel like fools after realizing that they have wasted chunks of money on treatments that made no improvement on their child. So Sriram said that they don’t put that out in the world because it would be like they are ridiculing themselves.
Parents also don’t want people to know that their child is differently abled, in order to protect their child.
“So lot of parents want to protect the interest of their children,” Sriram said. “Want to protect the interest of their family. Because of which they don't propaganda about it.”
However, these scams are more prevalent in villages than urban areas, according to Sriram, because the doctors in the cities usually prescribe therapy for the children.
Still, it can take a while for parents to accept that their children are differently abled.