You look at Abhimanyu and you see a tall, gangly young man who looks and behaves different from most men of his age. But spend some time with him and you realize he’s a fine chap.
His father calls him a Sufi — somebody who’s good to be around, has an easy personality and loves to eat, drink, listen to music and sing (a lot).
Living with him 24/7 is, of course, a different ball game: Abhimanyu, 29, is fully autistic and has a seizure disorder. Even basic activities of daily living such as brushing his teeth, using the toilet, bathing, and wearing and changing clothes are difficult for him.
In January 2022, his journalist parents, Madhusudan Srinivas and Shubhra Gupta, both 60 and residing in New Delhi’s Saket area, made a significant decision. They admitted Abhimanyu to the Independent Living, Residential Skill Development Facility of the Shaurya Foundation Trust in Palwal, Haryana. The parents say they had to send their son away because the question “what after us?” haunted both of them.
“Since our son was diagnosed as autistic at two and a half years of age at Nimhans, Bengaluru, our life has changed in so many ways one can’t imagine,” says Srinivas. “Our first warning signs were when he didn’t have much eye contact or interact socially with kids his age. We were worried, but a lot of doctors told us that boys are slower than girls in development and that he would pick up soon. That never happened, of course, and we were glad that we got an early diagnosis and then started all his treatments that were not focused on curing him, because this is not a curable condition, but would definitely ease the process, for him and for us.”
Until a child with a mental illness is diagnosed, most parents hit a wall trying to figure out what exactly is wrong. Mental-health conditions in children can vary from ADHD, anxiety disorders and autism to conduct disorder, intellectual disability, schizophrenia and more. On finding out that their child has such a condition, the reaction of most parents shows a similar pattern — first anger, then denial, sometimes depression and finally acceptance.
“Abhi’s seizures started at 11 years of age, which was much later as most children who have autism and are prone to seizure get them earlier,” says Srinivas. “That is not to say that every autistic child has seizures. They may not. We were also told that along with autism it was probably childhood schizophrenia, which scared us a lot. But the doctor/neurologist, after running a series of tests, then started him on a course of such medications. Sometimes these drugs suit the child, sometimes they don’t and most of the times, we personally feel, doctors use the trial-and-error method, and our children have to take whatever is given them. We are helpless in that sense.”
As it is, it was difficult to teach their son basic things. But if Abhimanyu had a seizure again, despite medication, he would regress and lose all the skills that he had been taught — since seizures, of any kind, affect normal brain function.
So, Srinivas and Gupta tried to keep Abhimanyu’s life simple.
Teaching children with mental health issues varies from case to case. Since Abhimanyu was fond of music, his grandmother, a teacher of Carnatic music, tried to teach him when he was very young. But he could not manage to learn. “Learning disabilities are part and parcel of the broad spectrum of autism, and if it is mild, some children do go on to study and learn; not so with every child,” says Srinivas.
Abhimanyu understands the urge to pass stool and is toilet-trained in that sense, but at the residential home in Palwal he is still grappling with spasmodic bladder issues that require him to wear adult diapers for fear of urine leakage happening at any time. His stomach ailments also don’t seem to leave him, so he needs a constant caregiver, who is available on the premises. The facility also has skilled teachers who help him perform various tasks and learn new ones.
Abhimanyu is slowly coming to terms with the arrangement where he lives away from his parents. “At first there was resistance but now he’s slowly getting to be okay, as we see in the video calls we do with him,” the parents say. “He also comes visiting once in a while, like he recently did when we celebrated his birthday.”
Over the years Abhimanyu’s seizures tapered off, but his daily medications continued, and so did many therapies such as speech, occupational and ADL (activities of daily living).
Srinivas and Gupta prefer to call theirs a satisfying journey because they take pleasure in their son’s little wins — like how he learnt to roller skate and is a pro at swimming.
“The effort you take to teach a normal child, I would say it’s 50 times more difficult with these kids, and yet we and our child persisted, so it has its beautiful bits too,” they say. “The satisfaction in his little achievements, the joys, the pleasures are far more compared to what we had visualised or even imagined. Our glass is half full and not half empty as most people would think.”