Caring for poor kids with autism

JAN 23, 2022, saw the launch of a hopefully much-valued new institution: the Ideas Autism Centre (IAC) in Nilai.

Under morning rays which reflected off the new sponsored playground and a gardening patch, the Yang diPertuan Besar and Tunku Ampuan Besar arrived for the simple launch ceremony at the centre, located in a quiet neighbourhood in the western corner of Negri Sembilan that borders Selangor.

The house was loaned by a generous benefactor towards the cause of educating children with autism spectrum disorder (ASD), and its bedrooms are now classrooms (complete with alphabet posters and artwork one would see in any primary school), while other areas contain equipment for therapies.

After a tour of the premises led by our principal Sharifah Salleh, I thanked the many sponsors who made the launch of IAC Nilai possible: the landlord, Yayasan Sime Darby (YSD), Majlis Agama Islam Negri Sembilan, Hong Leong Foundation, RYTHM Foundation, Yayasan Yara, and Tune Protect Group.

Special credit must go to those who made our first centre in Rawang, Selangor, a success, where YSD played a crucial role. It was never planned for the Institute for Democracy and Economic Affairs (Ideas) – an organisation focused on policy research and advocacy – to run a centre for children with ASD. But, as highlighted by YSD chairman Tunku Imran Tuanku Ja’afar (coincidentally also the Tunku Muda Serting of Negri Sembilan), in 2013, YSD supported an Ideas research project entitled “Giving Voice to the Poor” which found that poverty- stricken parents with autistic children had almost no access to specialised care and therapy sessions due to the high costs involved.

Unusually for a think tank, Ideas attempted to directly provide such care and therapy, leading to the establishment of our first centre in Rawang in 2014, with funding from YSD under its Education pillar. Since then, we have assisted 107 children between the ages of three and nine, of which 81 have successfully enrolled into mainstream government schools – some doing remarkably well.

Furthermore, the team led by our brilliant principal is facilitating the training of teachers at six other autism centres throughout the country, including the beautiful centre I saw in Langkawi.

Our work is also augmented by partnerships with nearby universities: IAC is participating in a robotics research project at the International Islamic University Malaysia in Gombak, Selangor, while we provided training for their rehabilitation centre for autistic children, and a collaboration with Nilai University will provide programmes on first aid, diet and dental care with its School of Nursing.

There is no epidemiological data on the prevalence of autism in Malaysia but a study among child clinics by the Health Ministry found the prevalence of ASD in Malaysia to be approximately 1.6 in 1,000; the National Autism Society of Malaysia estimates approximately 9,000 children in Malaysia are diagnosed per year; statistics from the Develop-ment of Persons with Disabilities Department (under the Women, Family and Community Develop-ment Ministry) show 203,765 registered people with learning disabilities as at January 2021.

Of course, the Special Education Department of the Education Ministry is responsible for coordinating and administering all special education programmes in mainstream schools, and these include self-contained classes under the Special Education Integration Programme and the Inclusive Education Programme in which five students with special needs can be integrated into mainstream classes. However, these do not specifically cater to children with autism.

That is why it is heartening to see the trust and satisfaction from the parents of IAC children, and I’m certain that this work will continue. IAC Nilai now joins IAC Rawang in providing care, education and therapy for children with autism from low-income households up to the age of nine.

The care hours are from 8.30am to 5.30pm and the heavily subsidised monthly fees from RM200 per month include an individual education plan, holistic programme, occupational therapy, play therapy, speech therapy, hydrotherapy, hippotherapy (horse riding as a therapeutic or rehabilitative treatment), behaviour intervention plan, and outdoor activities.

There is also free regular training for parents and the public to provide support and awareness. During the Covid-19-triggered movement control order, not only where the lessons adjusted for online delivery, but mental health services were also offered for parents in groups and individual counselling. This full suite of services at IAC has actually enabled some parents to pursue full-time employment for the first time, easing their economic burden.

I know that there are many others working in this field who are also doing an amazing job, but I can’t help but feel particularly proud of the team at this charitable arm of Ideas, and I invite you to learn more at ideasautismcentre.com

Tunku Zain Al-’Abidin is founding president of Ideas. The views expressed here are the writer’s own.