THERE are no words to suitably describe what parents feel on realising their child is different. Society tells you that your child is “special” but special is just a word and for these parents it’s a word that means the path to parenting has become that much harder.
Tunku Mona Riza and her husband Ku Mohamad Haris have decided to tell the story of a couple who wanted to have a child for some years. When they finally have a son, he is autistic. They struggle to raise him as the husband deals with his own denial and coming to terms with autism.
It is not Tunku Mona and Haris’ story, but a story that came to them from many families who shared their heartbreaking experiences and heartwarming anecdotes.
The result is the movie Redha – Beautiful Pain, which opens in cinemas on April 14, coinciding with Autism Awareness Month.
It is written and directed by Tunku Mona. She and Haris are executive producers for the movie, which stars Namron, June Lojong, Harith Haziq, Izzy Izzuddin, Remy Ishak, and Susan Lankester.
The first time Tunku Mona met an autistic child was in the 90s.
“I was in my 20s when I met the daughter of some friends of mine. I saw her and tried to play with her. At that time, I didn’t know what autism was. My friend told me not to bother because her daughter was not going to react to me as she was autistic. She was about six then. At that time I only knew that it was some behaviour issue. I did not make an effort to find out more.
“What I realised was that, unlike Down Syndrome kids, autistic children do not have similar facial features and, because of that, it is hard for society to suss out that they are autistic,” says Tunku Mona.
Fast forward to 2012 when she was an accomplished TV commercial director and was doing super telemovies (feature length films for pay-to-view TV) with her husband. After completing her second super telemovie with Astro, someone suggested she do a film on “budak buas” (hooligan).
The suggestion did not sit well with Tunku Mona who prefers uplifting stories that have a moral. She then had the idea to do something on autism.
Studying autism and its impact on families
It took about two years for Tunku Mona and her team to research the topic. They spoke to many families with autistic children.
She met her friends, the late Mohd Shah and Bee Yang, whose daughter she had met many years ago.
“Their daughter is an adult now. They told me what they went through when they realised something was not right with their daughter. Back then, in the 90s, it was almost impossible to get information. The knowledge on autism was so limited. In some ways this girl was the same as other children her age and in some ways her behaviour was different. They couldn’t get enough information here, so they were frustrated. They just wanted to know for certain what it was and what they should do about it.
“So, they went to England and got the final answers they were looking for and they found out she is autistic. They shared with me their experiences, what it was like bringing her up and taking her out for meals, and how the public would react. They told me their frustrations, fears, internal issues and society’s issues.
“At the end of the day, all the parents I spoke to say the same thing. They all ask what’s going to happen to my child when I’m gone. That seems to be the common concern.”
From this family, she met other families. Hearing their stories and meeting them helped mould the story that would become Redha.
A father’s perspective
One family that stood out was Yong Yek Ming’s. He has 2 autistic sons – Wei Xiang and Wei Jie.
Tunku Mona met him and his boys and even shadowed them for a spell so that she could better understand what it is like to have autistic children.
“I could see that it was not easy. One day, he was driving with one child in the front seat and the other at the back. The one in front wouldn’t sit at the back and the one at the back wouldn’t sit in the front. They both had their own comfort areas. He was trying to concentrate on driving while one child was hitting himself. That first and short outing with them was enough for me to say, I need to tell this story.
“He was all out for his children. But for my character, I wanted the protagonist to be in denial.
“Denial is something very common regardless of the situation. You don’t have to have an autistic child to be in that situation. We can be in denial for so many reasons. Even though the truth is right in front of us, we just refuse to see it, because accepting it means acknowledging it. To acknowledge something we don’t like means we’re hurting ourselves. So, we might as well build a wall,” explains Tunku Mona.
Bringing the movie together
She strongly believes that there must be a reason to make a movie. She had more than enough reason to make Redha. Additionally, a little voice in her head told her this was it – the story that needed to be told and the movie that was hers to make.
“I was moved and affected. Am I much more grounded today and was I more grounded throughout the whole process of making this movie? Yes, very much grounded.”
In the process of making the movie, there were occasions when she was accompanied by the actors who played Danial to observe and mimic Wei Xiang’s behaviour when they were out for a meal. This would help them in their acting.
“There was something about Wei Xiang that I loved so much. The character Danial in my film is very much helmed on Wei Xiang and another boy named Hilman.”
Tunku Mona also sent the actors who played Danial for English lessons because autistic children usually speak good English with a slight accent, and she wanted them to sound authentic.
The actor who played young Danial also studied Wei Xiang’s movements and behaviour which had been caught on hours and hours of video.
Tunku Mona believes that the movie will appeal to parents, future parents and even those who are younger as it is basically about a child and society.
Her biggest fear is that the film will not do justice to the topic of autism and the families that live with it.
That was why she was in two minds on whether to make this movie initially.
She has been encouraged by the positive feedback to the movie trailer and the response from a few parties – representatives of Nasom (National Autism Society of Malaysia) and Autism Malaysia – who viewed the rough first edit of the movie.
“I know I can’t satisfy everybody. My main concern is the feelings of those with autism and their families, more than anything else. That is my No. 1 concern.
“Any one of us, if we have issues with finance, for example, we still have a solution. Whether it is a great solution or not, it is still a solution. It is different for parents of autistic children. The strength that these parents have is beyond words. I have become more patient and more tolerant from the experience of making this movie. I often think, if I were in that situation what would I do? It’s not easy.
“Sometimes it is difficult for parents to take their autistic child out because they don’t know what is awaiting them.
“I hope this film will make the families affected and society at large more comfortable. I hope that by having this film, parents with autistic children, or siblings of the child, will be more at ease when they are out as a family. When they go out, the family might explain that he is autistic and hopefully the people they meet will say, ‘I know’. Then, it becomes a comfortable situation to be in.
“After all, there is no big difference between those with autism and everyone else. The only difference is communication.”