- Published on Monday, 10 April 2017 08:50
It’s a normal scene. You are out at the store buying something, or perhaps you just wanted to catch the newest movie in a shopping mall.
Suddenly, you see a kid throwing tantrums in one of the shops, and the parents are struggling to control them. You immediately think to yourself,
“Ugh, what a spoiled child.”
But, what if that child is not spoiled at all? What if he is actually autistic?
Last year, a viral video had been shared on Facebook about a friendly boy conversing with someone off-camera, which became the butt of jokes and unkind comments about the boy's behaviour.
Many viewers laughed at his mannerism and action in repeatedly saying 'hi, awak' until someone informed the Facebook user that the boy is autistic. When the Facebook user Fairus Nazir found out, he immediately removed the Hi Awak' video and issued an unconditional apology to the boy and his family.
That unfortunate incident sums up how many Malaysians react to people with autism as they look like everyone else but do not always behave like society expects them.
Malaysian Digest conducted a random survey of people on the street, asking them how aware are they about autism. And out of 10 people asked, only 4 know what autism really is. The other 6? They have an inkling of what autism is, but they don’t really understand it.
The results we got are not surprising. Malaysians reactions echo much of Asian society’s perception of people suffering from mental health problems, and the stigma still attached to it.
Autism, according to National Autism Society of Malaysia (NASOM), is a complex developmental disability which typically appears during the first three years of life due to a neurological disorder that affects the functions of the brain. Which means that, autism is a behavioural issue.
Autism cannot be identified by facial features like Down’s Syndrome, nor can it be identified by physical features like Cerebral Palsy. This makes it significantly harder for people to identify an autistic child, as it can only be noticeable through social interaction.
Last Saturday, we celebrated World Autism Awareness Day on 2 April by turning the Kuala Lumpur Tower blue and the entire month of April is also Autism Awareness Month dedicated to highlighting efforts to reach out to autism sufferers. Malaysian Digest decided to shine the spotlight on those living with autism and how we can help them succeed.
"People Keep Looking At Autistic People Like It’s A Disease"
Norazimah Nordin, 47, from Johor Bahru is a mother of 6 and a proud mother of an autistic child, was willing to share with Malaysian Digest, the challenges of raising an autistic child.
“Patience is key. Autistic children have a tendency to live in their own world.
“ And if they found something they like doing, they want to do it over and over again. If you try to stop them, they will throw a huge tantrum, and it will be very hard to control,” she said.
Norazimah told Malaysian Digest that she first realised that something is not right with her son when he was two years old, due to him not talking at all, and his social skills are somewhat lacking.
“When he was two years old, me and my husband started to worry about him because he is still not talking, and its very hard for him to make friends, loves doing the same thing, and he always goes hiding even in the house,” she said.
“So we decided to bring him to a specialist. After a few tests, it is confirmed that he is autistic. It was a very tough time for the family, because there is no specialist in Johor, so we had to make trips to Kuala Lumpur three times a week just so he can meet the doctor for his checkups.
When asked regarding Malaysian’s awareness of autism, Norazimah lamented that Malaysians, as a whole is still quite unaware of autism. And to make it worse, there is a stigma of autistic people.
“I think that Malaysians, are still very unaware about autism. The only exposure they have of autism is from media, that might help but as a whole, they are still very unaware.
“And there is a stigma of autistic people, which makes even harder for us. People keep looking at autistic people like it’s a disease. Like its contagious. Autism is not contagious, it is an affliction not a disease.” said Norazimah.
And Norazimah also added that she believes the government needs to do more to help facilitate autistic children in school.
“Its not that they cannot learn, they are just a little slow. Maybe a special class for them can be created, so that they can get more attention, so that they can succeed. Some of them have their own talents, which can be nurtured.” Norazimah said.
When asked about the future of her son, Norazimah said that she fears for him actually. She says that our society is not really accommodating for people with autism.
“Of course I fear for my son. Lets say one day I’m not here anymore, who’s gonna take care of him? We don’t really have a place for him, and people might mistreat him out there,” said Norazimah.
For Every 1000 Autistic Kids Out There, There Might Be One Or Two Specialist - NASOM
Norazimah’s concern is echoed by Feilina Feisol, chairperson of National Autism Society of Malaysia (NASOM).
According to Feilina, NASOM does a lot of things for the autism community in Malaysia. NASOM holds advocacy campaigns, promotions, talks, seminars and others. NASOM also sets up intervention centres all over Malaysia, with only Perlis and Sabah not having a centre yet.
When talking about stigma towards autistic people, Feilina expressed her frustration. She believes very strongly that some of the biggest problem stems from the stigma people have.
“Stigma and misconception about autism is the biggest problem among our people. Most of our people don’t understand autism, and they are afraid of it. That’s why some parents are in denial, they don’t want to accept that their child is autistic, and it creates problems,” she said.
“The stigma robs autistic people of their chance to lead a better life, and that’s wrong.”
This is why Malaysians need to be more aware of autism, according to Feilina. She says that better awareness will lead to better quality of life for autistic people.
“Better understanding of autism will help everyone. Right now, the government is trying to help autistic people, and special needs people in general. But the problem is that the stigma of autism is stopping people from admitting that they need help,” said Feilina.
When asked about why autism awareness among Malaysians is so low, Feilina believes that there are a lot of factors that leads to our low level of awareness.
“Firstly, we have to understand that autism in itself is very hard to identify. It is a behavioural disorder. There are no telling signs, except after interacting with someone. You cannot identify autism even with a blood test.
“Secondly, we are lacking of a real voice for autism. Which is why our general public is not aware of autism. We don’t have a real spokesperson for autism.”
“Lastly, autism is not a one case fits all affliction. If you have 1000 autistic person in one place, all 1000 of them will be different. Not one of them will be the same,” said the NASOM chairperson.
Feilina also believes that media is not helping, and instead feeding the misconceptions among people.
“Most Malaysians, their knowledge of autism comes from movies. This is not really helping, because some of it causes misconceptions of autism. Movies always portray autistic people as having some sort of talents. But not all of them are like that. Some of them might not be as lucky, so what happens then?”
Feilina herself has a 20-year-old son with autism, and she shared with Malaysian Digest her challenges that she faced in raising an autistic child.
“For me, the hardest part was the travelling. I was living in Malacca, and I had to make daily trips to Kuala Lumpur because it’s the only place that has all the necessary facilities.” said Feilina.
“After a few months of back and forth travelling, me and my husband decided to leave everything and move to Kuala Lumpur for good.”
This brings us to another one of the biggest problems of the autism community in Malaysia, which is lack of necessary expertise.
“You have to understand, that for a child with autism, early intervention is paramount. We need early intervention. But sometimes for parents in rural areas, it is very hard for them to bring their child to specialists, as the facilities might not be readily available for them.”
“And other than facilities, the human expertise is also not there. During the 2000’s, when my son was first diagnosed with autism, there is only one specialist for autism at the hospital. For every 1000 autistic kids out there, there might be one or two specialist,” said Feilina.
And this is further compounded with the fact that autistic children need a lot of help especially in the early stages. They need speech therapists, social skills coach, and many more. According to figures provided by NASOM in earlier media reports, treatment and diagnosis is mostly centred in the Klang Valley and even when those from less urban areas make the long commute to these facilities, there are endless waiting lists for therapy and doctors consultations in government health facilities.
But even after all this, Feilina is optimistic about the future of autistic people in Malaysia. She believes that the government is doing their part, but more time will be needed for the implementation of the programs.
“I’ve Been To 7 Different Interviews, But All Of Them Rejected Me," Autistic Graduate Shares His Journey
According to figures provided by NASOM in earlier media reports, treatment and diagnosis is mostly centred in the Klang Valley and even when those from less urban areas make the long commute to these facilities, there are endless waiting lists for therapy and doctors consultations in government health facilities.
It was also reported that data from the Department of Social Welfare based on voluntary registration of OKU (Orang Kurang Upaya or disability) cards, there are 12,887 individuals registered as autistic (9014 children and 3873 adults) in April 2016, The Star reports. At the same time, the report also cited Ministry of Health data that annual figures show an upward trend.
Besides Nasom, which runs 20 centres in 11 states offering treatment and care facilities, Permata Kurnia, a government state-of-the-art centre for autism initiated by Datin Seri Rosmah Mansoor which opened its doors in Sentul in November 2015 offering much needed early intervention and pre-school programmes to over 250 autistic children.
Given the odds stacked against individuals with autism in Malaysia and the difficulty in getting treatment to overcome this disorder, Malaysian Digest reached out to a young adult afflicted with autism, Saifullah Kamarul Azlan. Saifullah and the obstacles he overcame in striving to live a 'normal' life.
Although he is afflicted with autism, he does not think of it as a problem but instead goes through life as normally as possible.
This young man proved that his condition is not a problem, even managing to graduate with a Mechatronic diploma from Politeknik Port Dickson.
When speaking with Malaysian Digest, Saifullah shared his experience living with autism. He told us that when his mom first told him that he is autistic, he was surprised and confused.
“At first, I was confused actually. I don’t understand. I didn’t realise that I was different from everyone else actually. But after my mom explained to me what is autism, I started accepting it.” Saifullah told us.
Saifullah also told us that he didn’t realise that he was different from others, because he felt like there is not much difference at all between him and the others. But he admits that it is quite hard for him to talk with people especially strangers.
“At first, it is very hard to talk to people. I prefer to stay quiet. It’s hard to describe the feeling, but I feel like it is very hard to communicate. Especially strangers. Only if the person really puts an effort to speaking to me, it will be easier,” said Saifullah.
When asked about his school memories, and how people treated him during his diploma days, Saifullah looks back fondly. He told Malaysian Digest that his schooling days was very good, and very fun.
“It was fun actually. There were some people trying to take advantage of me but I never felt like that. If someone asked me to do things I just did it for them. But it is quite tough, because sometimes I don’t know whether something I’m doing is good or bad.” Saifullah said.
“But I prefer to be positive, and think of it as a good thing,” He added.
Finally, when asked regarding society’s perception of him, he looks sad.
“Some people don’t understand me. And they think badly of people like me. They think that I am incapable of a lot of things, but actually I can do it if they give me a chance.
Saifullah also shared with us that now he is struggling to find a job, after his graduation.
“I’ve been to 7 different interviews, but all of them rejected me. Perhaps it’s because of my condition. But it’s okay. I prefer to think positive. Maybe its not the right job for me anyway,” said Saifullah.
When asked about his hopes for the autism society in Malaysia, he believes that the most important thing is for people to give them a chance.
“We are just like everyone else actually,” said Saifullah.
“We only have our own quirks, that’s all.”