by Wan Saiful Wan Jan. First published as “All children deserve a chance” in The Star 13 May 2014

Last month was Autism Awareness Month and many events were organised by various groups to inform the public about autism. I attended quite a few events, but mostly in the Klang Valley.

Some of the media, including this newspaper, took part too. Various articles were published, and interviews broadcasted, to tell the public about autism. All these are very good to see. I applaud everyone who took part in the initiative.

Without getting too technical, autism is a ‘spectrum disorder’ which means the severity of symptoms ranges from a mild learning and social disability to severe impairment, with multiple problems and unusual behavior.

The disorder may occur alone, or with accompanying problems such as mental retardation or seizures. Autism is not a rare disorder. Its cases are found throughout the world, in families of all economic, social, and racial backgrounds. Doctors, politicians, and rubbertappers alike are known to have autistic children.

Looking back to when I was in primary school in Sekolah Kebangsaan Dato Ariffin Mohd Nam in Perlis, I think at least 2-3 of my schoolmates were actually autistic. But at that time, in early to mid 1980s, knowledge about autism was relatively lower.

And if you consider the fact that my primary school was in a rural area, halfway between Kangar and Padang Besar, I guess it is not surprising that the teachers were not yet well equipped to detect the condition.

Today many things have changed. Parent and teacher awareness has increased tremendously. The government too has done a lot. The successful International Seminar on Autism that was held in Putrajaya on 22-23 April was just one example.

The Education Blueprint that guides the works of our Ministry of Education has a section dedicated to children with special needs. It states a clear aim of making our schools inclusive. The Blueprint acknowledges the 1994 Salamanca Statement and Framework for Action on Special Needs Education by saying that those with special needs must have access to mainstream schools and that mainstream schools with an inclusive orientation are the most effective means of overcoming discriminatory attitudes.

At IDEAS, we too are trying to do our part. In early 2012, two friends, Mustaqeem Mahmood Radhi and Mohd Fakhri Noor Affandi, called me up suggesting we meet for some teh tarik. Fakhri is not just another father of an autistic child. He is a man with a mission. And that mission is to set up a learning facility for his son to get quality education despite his autism. He wanted to set up the “Pusat Asuhan dan Terapi Nouri”, named after his son.

At that time, IDEAS too was looking at ways to help the disadvantaged. And eventually that conversation at Devi’s Corner mamak restaurant in Bangsar led to the establishment of the IDEAS Autism Centre (IAC) in Taman Bukit Templer, Rawang. Both Fakhri and Mustaqeem played a pivotal role in setting up the IAC, from identifying the premise to renovating it to recruiting our very talented Principal Puan Sharifah Salleh.

The main objective of IAC is to provide holistic early intervention for autistic children from the “bottom 40 percent” families, preparing them for entry into mainstream primary school. To get into the IAC, the children must be aged between three and nine, and we prioritise those from families with household income per capita of less than RM1500 per month.

Children attending the IAC receive professional care, speech therapy, occupational therapy, as well as educational support to prepare them for the inclusive mainstream schools envisioned by the Ministry of Education. All these happen under one roof. And I am happy to say that, even though the IAC is just over a year old, some of our students have been accepted for that transition.

We now have 20 students and we are now looking for 10 more students to fill up the 30 places that we have. This year we will also start our training workshops for parents. My Principal Puan Sharifah keeps reminding me that if parents do not support the children at home, then whatever support we provide at the IAC will take much longer to be effective. So we want to train our parents with some basic skills to become “therapists” of their own.

We also want to provide more inputs into the government’s policy-making process. Setting up and running the IAC gives us first-hand exposure to the challenges and obstacles faced by the parents and by those who want to help the children. That is why the operations of the IAC is integrated within our policy research and advocacy activities.

At the start, IDEAS put in almost RM400,000 as seed fund for the IAC. We then received donations from various parties to get it going. Among the IAC’s major funders so far are the ECM Libra Foundation, the A&A Charitable Trust, and the Jephcott Charitable Trust.

Cheque handover ceremony 7 May 2014

Cheque handover ceremony 7 May 2014

At the culmination of the 2014 Autism Awareness Month, we received a major boost when the Yayasan Sime Darby (YSD) pledged RM1.1 million over two years for the IAC. That means for 2014-2015, we are short by just another RM400,000 from our RM1.5 million target.

At the cheque handover ceremony on 30 April, YSD Governing Council Member Datin Paduka Zaitoon Othman explained that they are happy to collaborate with us because in addition to helping the children, we will also produce research, data and facts that can help encourage improvements in the provision of special education.

The trust is certainly humbling, and the expectation is high. But we most certainly owe it to the children to do our best to help them. In the mean time, if you know of any children from low-income families who might benefit from our help, please do get in touch with IAC Principal Puan Sharifah Saleh via email sharifah@ideas.org.my

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Wan Saiful Wan Jan is CEO of the Institute for Democracy and Economic Affairs, Malaysia’s first think-tank dedicated to promoting market-based solutions to public policy challenges. Wan Saiful writes extensively on issues that cut across the political spectrum. His ideas are much sought after at home and abroad. You can email him at wansaiful@ideas.org.my or follow him on twitter @wansaiful. The views expressed here are entirely his own.

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