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He broadly explains autism thus: “Autism is a communication disorder and is a broad term. Only around 1/3rd of the population on the spectrum has normal intelligence. This is what people interpret as high functioning. Of them, only 10 per cent would be exceptional in one skill, that is called savant syndrome,” he says.
“If we can identify a person’s forte and provide ample training, they will be able to function without much intervention.”
He cites one example. “Years ago, parents brought a Class X boy for consultation, saying they weren’t able to find a rehabilitation centre for him. They were from a rural area and were finding it difficult to look after him. The boy never looked at my face. But he was scribbling something on a piece of paper. After consultation, I saw that he drew quite a decent portrait of me. I told his parents to channel resources to help him excel in this skill,” he says.
However, the doctor explains that not many children with autism will stick to a routine. So trainers have to schedule according to the student’s convenience.
“After proper treatment and guidance, the boy has grown up to be a designer. He is working in an advertising firm in Bengaluru,” says Arun.
Affordability & accessibility
Dr Jayasree, whose son is now 22 years old, was adamant about not taking her son to a special school. She wanted him to interact with peers who weren’t from the same background. She believes such social interactions are beneficial, especially with students outside of Autism spectrum disorder (ASD), as they can improve their analytical capability.
“I took him to several schools. However, they all said the school management won’t be liable if my son faces mistreatment by the so-called normal students. After much searching, a top school in Ernakulam agreed to enrol him on the condition of hiring a shadow teacher at an additional cost on top of the already high fees. There were quite a few staff and students who supported him,” Jayasree says. The social environment has been beneficial for him.
However, Jayasree says, affordability is one major concern when it comes to the development of children on the spectrum, and one of the major factors that caters to their well-being is therapy. Occupational therapy, speech, behavioural modification, and sensory integration… all help one to function smoothly.
“Private-run institutes are proven to be effective, but it is not feasible for most parents. For 45 minutes of training, the cost ranges from `100 to `1,000, sometimes higher,” she explains.
“Autism affects people from all walks of life. But what about those who are financially struggling?” she asks.
“I’ve seen instances of mothers tying up their children at homes when they go to work. No parent wants to do this. Aren’t they also part of society? The service has to penetrate the grassroots level.”
Need for inclusive education
Dr Arun confirms that the state isn’t fully equipped with the necessary facilities.
“According to recent studies, in every 50 births, one child might be on the spectrum. In that sense, we require facilities even at taluk level, including psychiatric departments. This will help them get treatment near their houses and avoid travelling long distances,” he says.
Preetha has now found her son in a residential facility in Thrissur for training and therapy. Since Sidharth doesn’t have access to education, she makes sure to include social activities in his routine.
“A few years ago, during a summer vacation, I took Sidharth to a swimming camp. Swimming can improve motor skills, speech, cognitive ability and confidence. However, he was denied access to the facility, as they don’t have staff to train children with autism.”
She also adds that when Sidharth was sent to school he also faced physical torture. The staff mistreat children when it becomes difficult to discipline them, she alleges. “However, many on the spectrum cannot express what they feel and experience. It was a few students with Down syndrome who spoke to me and showed marks on their body,” Preetha explains.
