news

The right to belong

A day spent at the National Autism Society of Malaysia leaves Aneeta Sundararaj with a sense of just how special autistic children are

I ARRIVE somewhat early for an interview at the centre for the National Autism Society of Malaysia (Nasom), located in Titiwangsa, Kuala Lumpur. While I wait, a little boy pops in and out of a room nearby. We do not speak to each other nor do we make eye contact, but I am aware he is observing my every move.

When the other children arrive at the centre, he joins them around a table which has been set up for them with drawing paper and crayons. The teacher tells them to draw images that reflect the celebrations for Merdeka Day. They are also preparing for the Sunshine September campaign by the Suria KLCC Group to raise funds for Nasom.

Surrounded by his friends, the little boy, whom I now know is 11-year-old Muhd Alif Taufik, comes out of his shell. His first words to me are: “MH17 crashed in Ukraine on July 17. There were 298 passengers. They all died.” Then he tells me that he has 17 friends in his class and four of them are absent. He recites their names. Taufik has one brother who is 1 year and 8 months old. He was born on Dec 20, 2012, which was a Thursday.

When I ask him how he feels about his school (SK Setapak), he becomes flustered. Instead, this “walking calendar” (as his teachers describe him) shares with me information about when his parents were born, right down to the day. I know what his father does for a living (he is an engineer) and when he first went to school. He then takes my pen and writes down another fact that is important to him: “Muzafar dikejar Izzaham pada 16.02.2014, Rabu” (Muzafar was chased by Izzaham on 16.02.2014, Wednesday).

The ability to rattle off facts, but not process the information in a meaningful manner, is one of the many characteristics of the autistic children at Nasom.

My attention is then drawn to the boy I’ve come to meet, 14-year-old Hafiz Izzuddin Zainudin. I have already been informed that he was diagnosed with Asperger syndrome. He is drawing the country’s flag. Together we count the red stripes and we realise that he’s drawn six red stripes and one is missing. He buries his head in his hands and mutters, “Sekarang gagal (Failed now).”

Among those who placate Hafiz and tell him not to give up but to try again are his schoolmates from SMK Bandar Baru Sentul, Nurul Ain Nadirah Rasman and Nur Fazlin Shamsuddin. Both girls are also 14. While Hafiz reworks his drawing, the two girls give me a glimpse of what life in a mainstream school can be like for Hafiz.

CHALLENGES OF SCHOOL LIFE

Fazlin begins by recollecting an incident ­— when Hafiz was at the receiving end of some school bullies. She shares: “There is one group of boys who tease and bully Hafiz. They laugh at him when he speaks or his answers are wrong.

“One day, I was told that in the toilet, the boys kept banging on his door. We ask them to try and put themselves in Hafiz’s place. What would they feel like?” Her voice has that element of sadness when she says: “I feel so kesian (sorry). Rasa simpati (sympathetic).” Both girls have told the bullies to stop and they have reported it to the teachers.

Instead of heeding the girls’ pleas to stop taunting Hafiz, these bullies don’t appear to care. In fact, Nadirah says that she and Fazlin are often told to keep quiet. Furthermore, both girls are themselves teased for being friends with Hafiz. They have learnt to ignore such taunts and Fazlin adds: “My parents have taught me not to hurt others.”

One of the teacher’s aides at Nasom Titiwangsa, Parimalar Devi V. Raman, 53, interjects with a story of the time an autistic child under her care did very well in school. Instead of supporting him and being happy, his friends were jealous of his success. She shares: “One boy even said to me, ‘Let him die’.”

Both the photographer and I gasp at such cruelty. Right on cue, Taufik gives another “update” on the MH17 tragedy and how many lives were lost. I turn my attention back to Hafiz. Ready now to speak to me, he gives me a big smile and says something in Korean. Once he explains that what he said was “good evening”, he tells me that he’s just returned from Korea. His uncanny knack of picking up languages fast is one of the things that endear him to Nadirah and Fazlin. “We learn English from him,” says Nadirah.

Hafiz admits that he was initially scared in this new school. “They don’t understand me and think I am gila (mad). They mimic what I say. Sometimes I want to report to the teachers. But I remember what my mother said and that is not to layan (encourage) them. If I ignore them, they will become letih (fed up). I also ask them ‘Tak rasa salah kah nak ejek orang? (don’t you feel guilty about teasing others?)’ but they don’t care.”

He brightens up when he looks at Nadirah and Fazlin. Without prompt, he says: “My friends are awesome.” He also adds that he likes his new school more because it has a feature that is very important to him: “My new school has a water dispenser.”

Eager to tell me more about his recent trip overseas, Hafiz says that he was part of a choir that performed at the Pyeongchang Special Music and Art Festival. Not one bit shy, he agrees to my request and sings for us. The words are enunciated properly, his voice is melodious and he is pitch-perfect. When he sings the chorus I recognise the tune as the late Datuk Sudirman Arshad’s award-winning song, One Thousand Million Smiles. Hafiz is pleased as punch.

While the girls are unsure of what they would like to do when they grow up, Hafiz has set his sights on a career in broadcasting. The girls will forever remember Hafiz for his strong spirit and determination in the face of adversity. And Hafiz knows he’ll always keep in touch with his friends. He says that although writing letters and using the telephone would be better ways to keep in touch, he thinks it will be more practical if they all use Facebook.

Once again, Taufik reminds us about MH17. This time, he adds information from the MH370 tragedy. While he is merely reciting facts, I can see that all the others are saddened remembering these tragedies. Still, that sadness is tempered somewhat listening to Hafiz sing for us and his sense of patriotism as he completes his drawing of the Malaysian flag.

What: Sunshine September campaign to raise funds for the National Autism Society of Malaysia

Where: Suria KLCC, Alamanda and Mesra Mall

When: Until Sept 16

Most Popular
Related Article
Says Stories