Raising a child with autism

Rupa shows me the broken glass of a bookshelf in the bedroom, which her son Rakin had shattered by banging his head against it, not half an hour before I entered their home in Mohammadpur last week. He had done something similar last year, which had required 10 stitches on his face. This time, luckily, Rakin had no injuries. His mother was still shaken, the accident a vivid reminder that her world can be turned upside down in a second, though she works hard all day to ensure a regular routine for her autistic son.

"Earlier in the afternoon, he had been playing nursery rhymes on the computer in that room and pushed me away. He does that sometimes because he wants to watch those alone. I had just stepped out when he started doing that …," trails off Sultana Selina Rupa while clearing off the table after lunch. She's still in disbelief about what happened. "For 10 to 15 minutes afterwards, I was just standing there speechless. My hands are still shaking."

13-year-old Rakin has autism spectrum disorder, ASD. The condition, a development disability, has a wide range of symptoms—from difficulty with social interaction to repetitive behaviours.

Rakin doesn't speak at all though he does make eye contact with me. While watching videos of children's rhymes on YouTube, particularly Abol Tabol, he periodically laughs out loud, sometimes in prolonged bursts, also flapping his hands repeatedly to express his enjoyment.

"Our lives are not the same everyday. There is no guarantee that the day will turn out how I think it might, only God knows. Some days are good, others… like today, when something like this happens. That such an incident will not happen everyday, I cannot guarantee," says Rupa.

Her life was not always like this. Rupa graduated in Public Administration from the University of Dhaka and worked as an educational counselor at Flora Systems Aptech Computer, an organisation providing computer training courses. She continued to work after her marriage and the birth of Rakin in 2004. As a first and much-expected child, she recounts the dreams she had of him first walking, talking, and going to school.

"There was not much awareness then, I didn't even know what autism was," says Rupa. She first started noticing signs at age two, when she was pregnant with her second son. Rakin only said a few words, and never together. "He first walked at eight months, which was fine, but I worried why he didn't speak more. He was also very quiet, and would remain fixated on something like the fan rotating overhead," she recounts.

Rakin's mother quit her job after her son's diagnosis as taking care of Rakin is a full-time job. His father also works from home much of the time.

Rupa read an article in the paper which outlined three main reasons why children do not speak—a birth defect, hearing problems, and autism. "That's the first time I had heard of autism. The characteristics for the last condition seemed to match that of my son perfectly, though I was completely unwilling to accept, at the time, that there was a similarity."

"Still, I felt slightly afraid that it might be true and urged my husband to take him to a doctor," says Rupa. Her second son was born at around this time and Rupa had to frequently leave her infant at home with her relatives while she went to doctor after doctor seeking a diagnosis. A child specialist recommended that Rakin first undergo a hearing test to rule out that possibility. "His hearing turned out to be normal. The doctor only said to speak to him more to elicit a response. My husband said that I was needlessly worrying. My mother-in-law reassured me that her son [my husband] himself spoke very late—at four years. But I still worried why he didn't talk."

A few months later, Rupa took Rakin to another doctor and specifically mentioned her worry that it might be autism."He seemed unfamiliar with the condition and advised me to wait and see." It took an appointment with the late Professor M R Khan, a noted child specialist, who on seeing her son's development and behaviour immediately referred her to a child neurologist, Dr Mizanur Rahman, who was the first to tell Rupa definitively that her son was autistic. Rakin was four years old by then. The earlier ASD is diagnosed, the better for the child. Therapy during the critical period of development before their third year can be crucial.

"I had read up about autism in the meantime. Still, that night, I had no sleep. The first three months after his diagnosis, I only cried," remembers Rupa. After that, she accepted that her life would be like this from now and did what had to be done. She quit her job. Rakin was a special needs child and she needed to take care of him throughout his life.

Rakin goes to a special needs school of the Autism Welfare Foundation in the afternoons for four hours a day. Rupa had first admitted him to a mainstream pre-school but a lack of cooperation from the staff made her pull him out of the school after only a few months. "He is hyperactive and would wander off to the other schoolrooms instead of playing in the big classroom like the other children. The teachers, instead of closing off the other doors, would call me to run around after him and bring him back every time."

The family specifically moved to this area from their own home in Gopibagh as many special needs schools are located in Mohammadpur, Lalmatia, and Shyamoli. Rakin's younger brother Nafis is a sixth-grader at the nearby St Joseph's school. Rakin's school, however, costs more than the average fees at mainstream schools, about BDT 5,000 a month. The financial burden on the family is harder with the loss of Rupa's income. Rakin receives speech and occupational therapy at school but the family soon stopped extra sessions, which could prove useful to his continued development, as they couldn't afford these any longer. A 45-minute session costs BDT 700.

Rakin's father, Mohammad Yunus Khan, an advocate at the Supreme Court, handles many of his cases from home because he also needs to give time to his son. "I can't do it all the time," says Rupa. Clients come to their home and Khan goes to court only when required. Still, most days it is mother and son alone at home.

Rupa and Rakin's life is largely confined to the small flat they live in in Mohammadpur. Earlier, Rupa used to take Rakin to go see his grandmother and aunts in old Dhaka but these visits are becoming less and less. "As he's grown older, he's become more hyperactive," says Rupa, gesturing to Rakin jumping up and down in front of us. Especially so, after moving to this house. "I wasn't able to counsel him beforehand, normally I would explain the move to him through a story, otherwise he would wonder where he's been taken and why."

Moving to a new home can be confusing and downright terrifying for children with autism—who thrive on routine, structure and familiarity in their surroundings. The move was rushed and Rupa was busy getting her younger son admitted to school at the time. "Rakin couldn't accept this [their new home] at all. He didn't want to sleep in his bed and would run from room to room, searching for his familiar spaces. He is still not comfortable in his new surroundings."

Other aspects of Rakin's daily life are strictly routine and over time, he has learned to do many tasks himself. He makes gestures with his hands to make his mother understand what he wants. In front of us, he brings his plate over to the table to announce that he wants a snack. Other tasks he can do himself, such as pour himself a drink and go to the bathroom. He likes dinner at the same time every day and always eats at the table.

Outside the house, Rakin faces stares and more often than not, unkind words, on seeing him "stimming" [self-stimulatory behaviour]—he makes loud vocal noises and flaps his hands. "I have heard Nafis's classmates and their parents call him pagol [crazy], sometimes even to my face, and that they are afraid when they see him," says Rupa tearfully. Rakin comes over from the other room to where we are sitting, concerned that something is wrong. He then tenderly wipes away his mother's tears.

"Still, I don't take him out much anymore. It hurts me that they say such things about him," continues Rupa. The family's social circle is limited for similar reasons. Rupa can't take her son to acquaintances' homes because Rakin has, in the past, started shredding papers lying around or thrown clothes from the balcony. Rakin has no playmates—not even his cousins want to spend time with him. Family functions, such as parties and weddings, are tricky and require Rupa to elaborately prepare him for these, by showing him pictures of what the event would look like and how long they would stay there.

But another problem is emerging within the family. His brother Nafis can't speak loudly in the house, for example, because Rakin gets irritated. "He doesn't have much independence in the house because of his brother's condition. As he's getting older, he's interacting with Rakin less and less. I say nothing to him because I worry that one day he may accuse me of not giving him any time because his brother needed, and still needs, so much of my time and attention." As her children grow older, Rupa is finding it harder and harder to handle their fights and attend to both her children.

For Rakin and his mother, there is never a day off from his condition. "I've forgotten to hope, I've forgotten what it's like to have hopes. I do not even think of the future," says Rupa while cradling her son on her lap while he watches TV. She insists that there must be awareness so that when she's walking down the street with her autistic son, he won't be teased by passersby. "These children should be accepted and appreciated despite their differences and their mothers appreciated. In our country, they are neglected and secluded, though they should be encouraged to widely interact with others to help their social skills."

Later in the evening, Rakin made a move to the room where the incident had occurred in the afternoon. The glass had been cleaned up but Rupa left the door locked, fearing he would go in and hurt himself again. She explained to him that he had broken the glass and that there was nothing to be done, coaxing him away. "I think he's feeling guilty now. He keeps looking at the cabinet. But I'm afraid he might just do it again."