In all their family photographs, Little Anas looks like a handsome, healthy and happy baby boy. He cried and laughed at much the same things as his sister, three years elder, did. If there were any subtle signs of later problems, nobody was aware of them. It was only when he was a toddler that Anas’s parents started to worry.

Anas is the much-wanted and much-loved son of a well-adjusted and well-to-do family in Karachi. Unlike his sister, who had started to talk at 12 months, he did not say a word until he was much older. As he grew up, he seemed to become more and more different from other children of his age.

What upset his parents was that he did not seem to understand anything that was said to him. He did not look up when his name was called. He did not show any interest in listening to or looking at people speaking to him. When his mother came to pick him up, he never stretched out his arms, unlike his little cousin of the same age.

Managing an autistic child brings inexorable change: there are ups and downs, there are setbacks and there is progress

At first, nobody considered that Anas was anything but a very independent, self-sufficient child who was late in talking. It was the grandmother who insisted that Anas’ hearing be tested. Was Anas deaf? Perhaps deafness would explain not only why he did not speak, but why he seemed to be so much in a world of his own and took so little part in the world of others.

This line of explanation was cut short when Anas’ hearing was found to be normal. In fact, there was a variation in his audible responses. He was terribly frightened by the noise of the vacuum cleaner; he would scream hysterically and would not calm down. Eventually, the house was only cleaned when Anas was away. But on the other hand, Anas was always fascinated by the noise of the buses that passed by on the street.

Anas’ sister, from when she was 18 months, had revelled in playing ‘going to the shops’, ‘having tea’, ‘putting dollies to bed’, but Anas never did anything of the kind. He had a large collection of toy cars, but instead of playing with them in the way his little cousin did, he was interested only in placing them in long straight lines and in closely observing the spinning of the wheels. He never responded to other children coming to play with him.

Sometime in Anas’ third year, his parents knew that something must be very wrong. He still did not show any sign of language and in so many respects, he seemed to be left behind by other children of his age. However, he loved music and endlessly listened to new Indian songs and advertising jingles too.

His parents had heard of autism, but had dismissed the idea because they thought to be autistic meant avoiding people and not showing any emotional responses. Anas, they had noticed, liked to be in the company of people. In fact, he preferred to be near his mother and sister, and was happiest when his father played rough-and-tumble games with him. Anas had outbursts of hilarity, and occasionally violent tantrums, although it was very hard to understand why he had them.

When Anas was three years old, he was diagnosed as autistic after undergoing lengthy interviews, observations and tests. On psychological tests involving language, Anas performed very poorly for his age, but on a test where he had to fit geometric shapes together, he performed exceedingly well. At home, he soon became a wizard at jigsaw puzzles and could even do them picture-side down. This skill in particular gave Anas’ mother hope that eventually he would surprise them all and turn out to be an unusually gifted child.

During the time when language and social skills normally develop rapidly, between the ages of three and five, Anas learned these skills extremely slowly and he and his family had to undergo their most difficult period. He was very hard to manage — especially out of the home and out of his routine.

Strangers openly commented that the child must be hopelessly spoiled. However, Anas was allowed to do what he liked only because it seemed quite impossible to make him fit in with others’ wishes or to interrupt his routines. Severe tantrums were still common.

At last, Anas started to speak. But language did not open the door to communication as everyone had hoped would surely happen. Strangely, he often echoed what other people said. Anas was quite indifferent to make-believe games or simple group activities.

Anas was very set in his ways and it was extremely tricky to cut his hair, which had to be done when he was asleep. He was often seen flapping his hands and looking at them from the corner of his eyes. Sometimes, in a shop or on the street, he made a high-pitched noise and jumped wildly up and down for no plausible reason. It was difficult to travel with him anywhere.

The family still adapted to him and his ways. They tolerated what could not be changed, but teaching little Anas the common life skills such as dressing, eating, washing was a long and tiring struggle. Eventually, with much perseverance, progress was made.

Anas became much easier to manage after his fifth birthday. His language showed marked improvement, though he continued to echo phrases and to use them inappropriately. He made excellent progress at CFA (a mother-child programme) a special school only for children and adults with autism. He learned to master many skills, including reading, writing and arithmetic. His drawings were remarkably skilful.

At age 10, Anas was tested by a psychologist and was said to score in the normal range of intelligence on non-verbal tests. On verbal tests, he scored in the range of mild retardation.

Given his abilities and his educational achievements, the family was optimistic about Anas’ progress. Other people now commented on how ‘sociable’ Anas had become. He was not at all shy and often approached visitors to the house or the school, asking their names.

Although often he was rather too talkative, in a repetitive sort of way (today is Monday, yesterday was Sunday, tomorrow is Tuesday). Once he was quite badly injured after a fall, he never told anyone about it, and his mother was horrified when she discovered the blood on the clothes as she put them in the washing machine.

After leaving school, Anas lived at home. Although he could read very well, he did not read for pleasure. He was often restless and he endlessly pestered other with repetitive talk. He liked to watch television, and was glad to sit in front of the set with others for company. He knew the character’s names and actors of many Indian movies, Pak dramas, Newscasters, reporters, etc. He liked the ‘goodies’ to be good and the ‘baddies’ to be bad, but was confused if somebody was a bit of both.

Anas is now 20 years old and continues to live at home. He leads a simple life. He helps with the filing and tea making with his mother; he also helps with the gardening. Every day he paces round the lawn on exactly the same track. Adulthood for Anas is not a stage of maturity, but rather permanent immaturity. This seems to suit his youthful appearance. His voice remains loud and peculiar, his gait is stiff and ungainly, and his posture slouched. The independent living that his parents had hoped for seems out of reach.

Anas family is aware that there are other autistic individuals who have few practical skills, who are difficult to cope with, and who have remained mute forever. They appreciate that Anas has come a long way from the days when he looked ‘through people’ and would not speak at all. But they are worried what will happen to him when they can no longer look after him. They fear that in an indifferent environment, he could fall into neglect or become prey to exploitation.

Published in Dawn, Sunday Magazine, April 5th, 2015

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