Autism is not a death sentence. With the right support, and training, autistic children can eventually lead a normal life. CHAI MEI LING talks to some people who have been working behind the scenes to help these children

Y.L. Liew, principal and executive director of the National Autism Society of Malaysia, says work satisfaction has kept many of team committed to Nasom

MANY children grow up having affectionate nicknames.

But for Steven, though, it’s budak kurang ajar, courtesy of members of the public.

This is because he grabs whatever he fancies off supermarket shelves, runs from table to table in restaurants eating off people’s plates, and throws tantrums for no reason. And at times, he causes strangers to panic when he pounces on them to take a whiff of their body scent.

But the doe-eyed boy n e ve r means any mischief.

Steven is autistic. Social rules are concepts alien to the autistic.

The general public can’t tell that Steven has this disorder, which affects 35 million worldwide, because he looks just like any other normal child.

Steven’s parents are understandingly exasperated, having been on the receiving end of annoyed people who accuse them of having little control over their child.

At their wit’s end, their last resort — enrolling him into the National Autism Society of Malaysia (Nasom) — proved to be their best option.

Today, the nine-year-old is a Year Three pupil who excels in mainstream school and tops his class in many subjects.

He can sit still, complete his homework, understand instructions and can even manage a conversation with people around him.

His parents find this “transformation ” unbelievable .

The well-behaved boy reading quietly in the corner of the Nasom headquarters bears little semblance to the screaming and kicking child who had to be carried into the centre some three years back.

Back then, teachers at the centre had to coax him into coming out from under the table, distract him with toys when he got angry, make him “forget” his tantrums, and reward him when he was willing to obey instructions.

Slowly and painstakingly, they earned his trust, and began to engage him in learning manners and self-help skills like how to eat appropriately, refrain from taking things not his own, and bathe and clean himself. They even had to teach him how to play.

This is part of the structured intervention programme offered at Nasom’s 14 centres throughout the country.

At each centre, the staff work in a team to wean a child off a socially unacceptable behaviour, like displaying nudity. Because of their lack of emotions, autistic children do not feel embarrassed.

Some, who are well into adulthood, may still take off all their clothes in front of their teachers before they go for a bath. Teachers have to drum into them the message that this is not proper.

Nasom executive director and principal Y.L. Liew says intervention should start as early as possible because a child who gets used to a certain behaviour takes a longer time to be retrained and changed.

One autistic trait they try to put a stop to is the children’s inherent need to smell people.

“Some of these boys are in their teens. If they go to a girl and sniff, what do you think will happen?” The principal, who has been with Nasom for 16 years, admits there are many difficulties the staff face on a daily basis when dealing with the children.

“I feel that the most stressful lot of children with disabilities is this g roup,” says Liew, who has had 30 years of experience with the deaf prior to joining Nasom.

Teachers have to cajole children who cry non-stop 24 hours a day in protest of changes they don’t like, teach the children how to read facial expressions, and sometimes put up with violent behaviour that some children on medication can display.But there’s always hope.

Every child can be trained as long as the training is done according to his needs, says Liew.

The first most important step for these children starts with acceptance from parents.

Liew urges parents who have an autistic child not to lose hope.

“I tell them — I think you are chosen because God feels you can look after this child. And we are here to help. We don’t do miracles, but we try our best.” Aside from intervention, Nasom also offers an inclusive programme which prepares children of schoolgoing ages for mainstream schooling.

The main objective is not so much for academic reasons, but to have these children socialise and interact with peers their age.

They are taught how to read time, use money, queue up when buying food, and ask for permission to go to the toilet.

Before school starts, during the holidays, they are brought to their respective schools to familiarise them with the environment.

They are introduced to teachers, they get to sit in the real classroom, and they learn where the canteen and toilets are.

On the first day of school, they do not attend classes, but watch how other students assemble. They are then slowly introduced into the system.

Nasom is grateful that the Ministry of Education has worked with the centre the last four years in giving these children a chance to be integrated into the society. They are also given a leeway of two years in school — a 14-year-old autistic child can still be a Year Six student.

Every day, a teacher-aide from Nasom accompanies two children in a class and keeps tab of their progress. When classes end, the teacher-aide brings the children back to Nasom centres, where they are given after-school support.

Liew attributes the success of those who are doing well in school to parental support.

One of them is Abraham Isaac Pereira, 9, from Sekolah Kebangsaan Setapak, who scored 100 marks for English and Science and took the class’ top placing.

It’s not all work and no play for children in Nasom, as they also learn art and horse riding from volunteers and visit the cinema, National Science Centre and National Zoo.

“But there’s no sound of music,” says Liew, adding that Nasom is looking for volunteer music teachers.

“We have a piano, guitar and organ, but no one to play them and sing with the children.” Despite facing many shortcomings, the staff soldier on.

Last year, the team held weekly awareness courses to caregivers, parents, teachers, professionals, doctors and nurses in different locations.

“We have a committed team.

Many have brought in friends to help through word of mouth. Work satisfaction has kept many of us here.

“Some children came in with no speech. Today, when I ask them who I am, they say, ‘Mrs Liew’.

“And one child told me once: ‘I am what I am today because of Nasom’.

How would you feel (after hearing that)?” nThere will be a charity show on The Chronicles of Narnia: Prince Caspian on May 17 in Golden Screen Cinemas, Pavilion Kuala Lumpur. Proceeds from the tickets, priced at RM40 each, go towards Nasom.

WHEN IT HELPS TO BE FIRM

SHE has worked as a teacher at the headquarters of the National Autism Society of Malaysia (Nasom) for 13 years and has taken medical leave only once.

U.R. Parimaladevi admits that falling sick can’t keep her away from the centre.

“I’ll be here till the day I can’t wa l k , ” she says, softly.

That’s a revelation from a teacher who masks her soft-heartedness with the loudest voice and fiercest demeanour.

Mala, one of 17 teachers in Nasom headquarters, is a teacher-aide to two older students in a school in the morning.

In the afternoon, she conducts early intervention classes for autistic children aged 4-6, where she teaches them how to solve jigsaw puzzles and put beads together to improve their motor skills.

She adopts a no-nonsense approach even with the young ones.

“If we want them to learn,we cannot pamper them. Many children can be toilet trained within one month here, but some still come here in diapers because their parents cannot train them at home.

“We have to be firm, but every little thing that a student manages to do is a big step forward, a major achievement . ” For Mala, her biggest motivation is seeing her students succeed in a task, even something as simple as holding a pencil.

A few students at the centre name her as cikgu paling garang.

But many know it’s a façade.

A 14-year-old student pops in halfway and intercepts the interview, saying, “Her favourite phrase is ‘banyak cantik awak!’” Mala bursts into a guffaw and looks embarrassed. She then hurries the student out of the room and begins to sing praises of the boy.

Her eyes twinkle as she talks about how well the boy is doing in class. Many times, she has been reduced to tears when her students display affection towards her, like rushing to hug her after a long absence.

On weekends when the teacher does not have to be at work, she thinks of her students and smiles.

“My two children at home would say, ‘Mummy ’s thinking bout her other children.’ “This is not a thankless job.”