“There’s a reason why God created special children, whether its autistic, Down Syndrome or dyslexia. Its to teach us to understand the world from their eyes and look at the world differently.

“My son was two years old when the doctors diagnosed him as autistic. I had a feeling that something was not right when Dzarif was a bit slow to start walking and speaking compared to his sisters. Dzarif is now five years old and he teaches me something new every day.

There’s no dictionary or guideline on how to raise autistic kids. There’s no one size fits all. 

Autistic kids are very sensitive to sensory stimulation such as sound, touch, smell or sights that seem normal to other people. When they experience a sensory overload, they will have a meltdown. 

During Dzarif’s early stages, he refused to go to shopping malls because there are too many people. He wouldn’t even want to leave the car park and start flapping his arms like a bird because he’s overwhelmed. 

I know of a 17 years old autistic boy who repeats his sentences twice. ‘I want to buy ice cream, I want to buy ice cream. Vanilla flavour, vanilla flavour.’ 

The ice cream seller would probably think he’s an ‘orang gila’, but that’s just how the boy releases his sensory overload. 

Each autistic person has different ways of sensory release – some rock their body back and forth while speaking and some bite their fingers. It might be awkward for people who don’t understand autism, but that’s just how they are. 

It is not about changing them and molding them to be ‘normal’, it’s about accepting them for who they are. 

What’s normal anyway? You think normal is standard one, UPSR, PT3, SPM, get a job and get married. But there’s also people who never live through that track but still live as good human beings. 

“What is one thing you wished the public knew about autism?”

People have often asked me, how they can support autism. Number one, they must understand and number two they must accept. 

How? As simple as when you go to shopping malls and you see parents dealing with autistic children that are having a meltdown. Instead of staring, or worse, recording a video, you can just go to the parents, tap their shoulder and say ‘its okay, I understand.’

Dzarif sometimes has public meltdowns, the worst being in Langkawi airport. 

Overwhelmed by the number of people, he started playing with a trolley to release his energy. He has always loved moving items. 

But once we tried to return the trolley, he refused to let us. He immediately laid down in the middle of the floor of check-in queue and started rolling around. 

Everyone was staring at us and started talking amongst themselves. 

If only, someone would just tap my shoulder and say, ‘we understand.’ 

– Humans of Kuala Lumpur

Dzulkaedah runs marathons to raise awareness on autism and fundraising for NASOM – National Autism Society of Malaysia. Last year he raised RM 38,000 after running the Berlin Marathon which was given to NASOM facilities around Malaysia, like Kedah, Kelantan, Penang and Selangor to subsidize underprivileged kids for their speech therapy programme. 

He is now fundraising for the Autism Cafe project, a cafe that employs autistic youth. To contribute to this cause, please consider donating at https://www.simplygiving.com/dzul-run-ultra-for-acp

Story by Amalina Davis
Photo provided by Dzulkaedah
Photo/story edited by Mushamir Mustafa

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(This post was first published on April 1st 2018)

‘Why me?’ was the first question I asked when I found out I had a special needs child

“At that moment, I was struck by darkness. I felt my world collapsing, but then I asked: ‘How am I going to help him?’

At a young age, Ethan never responded to me. No eye-contact, nothing. 

Only when I sing to him, he will look at me and that’s how I started communicating with him. 

The biggest challenge is when I take Ethan out in public and he starts to have meltdowns, throwing tantrums. 

Sometimes, they cannot stand too much noise, the sensory is too overwhelming. They cannot take it and they don’t know how to express it, so they start to scream and yell. 

People would stop and stare, and give me that ‘you could be a better parent’ look. It didn’t happen once, but often and always in restaurants. 

One day these kids have meltdowns and the next day they’re happy and showing their true potential. So, don’t judge. 

Some of them are really good at drawing too, but you just need to discover their talents. 

For parents with young kids on the autism spectrum, my advice is to let them experience, let them explore their strengths and true potential. Give them a chance to prove themselves.” 

Photostory by Annis Saipul
Edited by Christine Cheah

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(This post was first published on August 15th 2018)

“My name is Mikhail, I have autism and I’m very proud of it.

“When I was in school, I got bullied a lot. I feel a lot of teenagers think that many people don’t understand them, even the popular ones. That’s why most teenagers would change their personality to join a crowd. That’s what happened to me. I was bullied by students who joined their friends in doing so.

But my advice would be to love yourself. God gave me autism for a reason, and to blame me, is to blame God.

When we watch some tv shows where there is an autistic character, the character will be high functioning autistic people. They feel shy and always looking down, but people forget they are also very smart.

I can talk to people face-to-face. I can look them in the eye, but most of the time I would feel awkward when I stop talking and then I would be thinking: ‘What do I do now?’

As for my dreams in the future, I prefer to keep them under wraps but I will tell you this – I want to study drama and theatre. I want to give people that magical feeling, because, well, everybody could use some magic in their lives.”

Photostory by Annis Saipul
Edited by Christine Cheah

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(This post was first published on August 15th 2018)