What motivated Malai Hj Abdullah Malai Hj Othman to set up Brunei's first centre for Autistic Spectrum Disorder was his son. But much later, it has become a jihad for Malai, he tells HADI MAHMUD
THE word 'dedication' brings to mind Malai Hj Abdullah Malai Hj Othman, a figure instrumental in bringing awareness on autism to the masses in Brunei and the founder of Smarter, the first organisation in the country committed to tackling Autism Spectrum Disorder.
But more importantly, beneath his outspoken and assertive (and sometimes just plain blunt) demeanor is a caring and committed father who wants nothing more than proper good care for his autistic 12-year-old son. Malai remembered it was like "a punch in the face" when doctors broke news to him and his wife of his then three-year-old son's disorder in 2001.
"When I came back from work that day and my wife told me the news, I was taken aback. I admit it was a 'whammer' for me. But I could not allow myself to be emotional. Because I saw how my wife and other children were affected by the news of my son's disorder I had to be the strong man," said Malai.
"I assured my family that it's going to be OK, that we can do something about it. So I allocated each of my daughters to be responsible for certain things. I put my eldest daughter in charge of my son's academic well-being, my second daughter to look into the training aspect toileting, and so on."
Malai has four daughters, the son being the youngest. The eldest daughter, now a lecturer at Universiti Brunei Darussalam, was instrumental in helping his family adapt to the discovery of his son's disorder, scouring the library at UBD for information and seeking out people who knew how to deal with autism.
His third daughter just went back to the UK to do her PhD after getting a Masters in Psychology. "So now at least I know my works will be continued by my own family. I never pushed my children to do anything. These were all their choices because they are the ones studying, not me. I think that's why God gave us Farid. There was a purpose for it."
Having worked with the Ministry of Health for most of his career, he was asked by the Child Development Centre at RIPAS to form a support group for autistic patients. But he declined the request, thinking that he was not good enough to carry out such a thing despite his extensive academic background and training in psychology, psychiatry and behavioral therapy.
"I told them no, because I knew you need a lot of commitment, and you need a lot of sacrifices. I told them I had to focus on my son, and I didn't want to worry about other people's children. So they left it at that."
A month later, the centre asked him again. But this time, it invited the parents of autistic children for a meeting. "They were clever. So when I sat down in the meeting and looked around, all the parents literally looked lost." At the time there was no organisation dedicated to taking care of autistic children.
"When my son was diagnosed, we weren't given much information on what we were supposed to do, where to go, or what programmes to implement. It was almost all up to the parents to figure out by themselves."
"A lot of people don't understand, no matter how committed you are or how interested you are in it, if you don't have the knowledge, you would still be like a headless chicken running around aimlessly," said Malai, who decided to join the support group and made himself the secretary knowing that the position is one of the most important in any organisation.
"I had a meeting with them and found out that they didn't even have a constitution, didn't have a programme. All they had was an idea to open up a school. Everybody had to pay a $1000 deposit, non-returnable. And the committee already had a good salary. Then I said to myself, 'this is not to help, this is to help themselves make money'."
Malai quickly drafted a constitution, laying down the organisation's mission, vision and objectives for the next support group meeting. "They laughed it off. They laughed at me for creating something like this. A few parents left the group." So he went on to start with just six families involved.
On September 9, 2001, the Society for the Management of Autism Related issues in Training, Education and Resources (Smarter) was officially established. In the first year Malai said he had to spend his own money to get the organisation up and running. In 2002 he organised a fundraiser, and acquired enough money to send six committee members to Australia to attend the first World Autism Congress. The first centre was launched in 2003 with 11 students at Jigsaw Primary School. It moved to the current branch in Sengkurong in 2004 after the Ministry of Health loaned them a building, and now has two other centres in Jerudong and Kuala Belait.
"I believe in this: parents are not the problem. They are the solution," said Malai. "For example when you send your kids to school, we as parents are made the enemies. Sometimes they make us the problem."
That's the reason why he makes sure that there are no professionals in the organisation, saying that "if you want to join this organisation, you have to become an associate member. That means you have no voting rights."
"Because, professionals come and go, and so do doctors. Teachers as well. But you don't change parents or siblings. They will be there forever. So my point was, and still is, to work with this consistency. The committee of the organisation, the people who captain the ship, the people who move the organisation, are the parents. If not the parents, who else?"
Pointing out that some non-governmental organisations in Brunei do not involve parents in its committees, Malai said, "how much do they know about the suffering that we as parents have to go through every day? They've got people who are not affected directly whether it is themselves or through their family members speaking on behalf of the affected."
"So I decided that we, the parents, have to take charge. As the saying goes: the bad news is, time flies. But the good news is, you're the pilot.
"That's what I tell the parents here. If you're not thinking of getting involved, forget it. Nobody else knows your son or daughter more than you."
The attitude of some of the authorities is such that parents are a burden, he said. "You speak on my behalf, you're a nice guy. If I fight for my right, or my child's, I'm the bad guy. I become a nuisance," he laments. "I represent all the parents. Because I have an autistic son. Not because I am a nice guy. That's why we use the term 'Family Support Group', because they are run by families, and supported by the very same people."
Smarter has been a member of the World Autism Organisation since 2002. It has met international standards (according to the Autism Program Quality Indicator), a leading regional body and provides world class quality service according to Associate Professor Dr Verity Bottroff, head of Disability Studies at Flinders University in South Australia, who came here in 2008 for a two-week assessment. The organisation is recognised by the UK's National Autistic Society as being on par with UK's best.
It has met all 19 criteria stipulated in the Charter For Persons with Autism in the United Nation's declaration on the rights of the mentally handicapped, and was invited to share best practices in the region during the Regional Conference on Disability in Commonwealth Asia in Bangalore, India.
Earlier in the month, the Smarter president announced the non-governmental organisation was currently down to their last $6,950 of funding with an overhead of $24,000, which includes the payment for 15 of their members. He estimated that he will need $21,000 a month, but with the current 85 members paying $120 per month, the $10,000 collected from the members is insufficient.
To ensure the organisation's sustanability, he drew up a business plan planning on providing car-related services (wash and maintenance), an air-conditioning service, furniture repairs, a cleaning service for offices as well as an office and printing service. "If I open all five businesses, I will be able to generate at least $20,000 a month. That will be enough for the organisation to sustain itself in the long term, and will enable it to generate regular income," Malai said.
However, he won't be able to start any of the businesses, until he gets a permanent building. An attempt to loan $2 million from a bank failed because he couldn't find a guarantor.
While he admitted that the main motivating factor in beginning was his son, it has become a lifelong cause for him. "That organisation is not for my son. It's for all the families. I have no support from anybody. Corporate social responsibility (CSR) is a lip service at the moment. Some are doing it on a one-off basis. What CSR should really be about, is adoption. Autism is a life-long thing."
Malai has no plans to stop what he first started once his son, who will be turning 13 next month, becomes an employed adult in the near future. "I have to help all the rest. All 85 of them are now my children."
"It is my contribution to the society. I think it's more my calling, my jihad. God has given me a special child. He has selected me to fight for this cause. I have been given the responsibility and I am accountable for it. During the afterlife I will be asked about this.
"It is something that I have to continue for as long as I live. And I want to live for 100 years, and I have been praying every day for longevity in life."
Source: The Brunei Times
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