Features >> Beacon of hope

Beacon of hope

By PANG HIN YUE

UKM’s newly set up Learning Lab for Autism gives hope to hard-pressed families seeking services for their children.


WITH four children to care for, doctoral student Norlaila Mat Tahir is not having an easy time, especially when her second child has a learning disorder. Norlaila, 38, had barely started her thesis on food science and nutrition four years ago at Universiti Kebangsaan Malaysia (UKM) when Muhammad Tajol Iman, then three, was diagnosed with Attention Deficit Hyperactive Disorder and autism. Up until recently, she had been on an emotional roller-coaster in search of services for her son.

Norlaila, who lives in Bangi, was in despair when the district’s education department rejected her application to have Muhammad, six, admitted to a national school that has a preschool programme. The department cited two reasons for turning away her son: he could not manage himself and he was not ready to learn.

While Norlaila concedes that Muhammad still wears diapers and has behavioural issues, she feels it was unfair for the department to discriminate against him.

“It is very stressful and frustrating when authorities are neither supportive nor understanding of the problems faced by families with special needs,” laments Norlaila. 

Coping better: Norlaila Mat Tahir could not be happier when her son Muhammad Tajol Iman, who has a learning dfficulty, was enrolled in UKM’s Learning Lab on Autism. – Photo by Pang Hin Yue
The PhD student had also considered placing her son in Pusat Pemulihan Dalam Komuniti (under the Welfare Department), but the nearest one is in Putrajaya. Given the distance, her workload and the need to attend to her other three children, sending Muhammad to the centre did not seem a viable option. “I was at a loss trying to find help for my son,” says Norlaila.

A couple of months ago, when she tuned in to a radio station, her hopes were renewed. Dr Hasnah Toran of UKM went on air to talk about a seminar on autism that was held at the campus.

Norlaila got in touch with Dr Hasnah and found out that UKM had launched its Learning Lab on Autism (Makmal Pembelajaran Autisme) in January this year. 

The cafĂ© at the cul de sac of the Education Faculty had been converted into a learning lab for parents seeking intervention for their autistic children. 

With UKM’s funding of RM319,000 for a three-year period, the centre is modelled after Hasnah’s alma mater, Oregon University, in the United States.

The university has lab classrooms where special needs students get to benefit from various interventions developed and fine-tuned by researchers at the university.

“It is a cradle-to-grave concept in that the students’ progress is tracked from the time they are diagnosed to the time they receive therapy and schooling,” explains Hasnah who obtained a doctorate in early intervention from Oregon University.

Tried and tested interventions involving the use of behavioural modification therapy and visual supports are replicated at the UKM lab. It is open from 9am to 5pm, Monday to Friday. 

Besides group learning and one-on-one therapy, students have swimming, cooking and gardening activities. No one could be happier than Norlaila who is grateful that UKM has such a facility. Her son is among the 15 who have been accepted. With five teachers and a handful of volunteers attending to them, Norlaila could not have asked for more.

“We took in mostly those who were unable to secure a place in schools due to a variety of reasons and those whom others consider as serious cases,” says Hasnah, who is one of the 10 lecturers in special education at UKM.

Norlaila is not alone in her predicament, notes Hasnah. Despite the Persons With Disabilities Act (PWDA) 2008, the rights of the disabled to gain access to the national education system is not guaranteed. Regulations under the Education Act state that only those who are “educable” are admitted.

As critics have repeatedly argued, the right to education is guaranteed under the Federal Constitution and the PWDA. Until and unless the regulations are amended, parents who cannot afford private schooling and therapy for their learning disabled children remain at the mercy of those vested with power to admit or turn away students.

For Sabarina Mohd Shah, who is doing her doctoral thesis on corporate governance in the Islamic banking system at UKM, she is glad that her autistic son, Luqman Syafiq Kamaruzaman, 12, has another place to go to after school. An advocate of inclusive education, she hires a teacher aide for her son to accompany him in a mainstream school.

“Teachers do not understand our kids. It is a challenge. But I believe that by including special needs students in the mainstream, they learn to socialise with other students and the latter learn to be more caring. It cuts both ways,” says the mother of six.

While the parents are clearly enthusiastic about the new set-up, Hasnah is only too aware that the responsibility to ensure the place is manageable rests heavily on her shoulder.

Being the mother to an autistic child herself, Hasnah, a former English teacher, knows the heartaches of parents who are hard-pressed for help and support.

Last month she had to turn away a few parents as the lab had reached its full capacity. Hasnah hopes more lecturers and undergraduates will come forward so that they can pool their resources to make the learning lab a place where students can get the best possible treatment.

“We welcome funding and volunteers,” says the lecturer who is in the midst of adapting American assessment tools for local use. While Hasnah is thankful to the university for the initial seed money, she hopes the flow of funds will continue as the bulk of it goes towards paying the teachers’ salary. Salamiah Bujang, a graduate in fishery science, is one of the five teachers at the centre and her pay is equivalent to that of a clerk.

“The teachers deserve to get more for their intensive work with the children. We hope to secure more funding and resources as we have to look at long-term plans like providing vocational training for the older students,” explains Hasnah. She hopes to inspire teachers who are currently pursuing their tertiary education in UKM to adopt new ways of teaching students with special needs.

Nazmin Abdullah, a school teacher whose son, Ariff Farhyie, five, is one of the 15 students at the lab, concurs. Having a child with autism, she says, changes her perspective of her job.

With her training and enthusiasm to gain knowledge in interventions, she reckons she can contribute to her school in Bangi. “These days if I detect students with learning issues, I’d quickly alert their parents. The sooner they get help, the better,” she adds.

Another PhD student in UKM who has a son with autism, Wan Zawiah Wan Zin, is all praise for the centre as it is convenient for parents like her. Wan Zawiah is busy researching for her course in applied statistics.

Being at the same place helps reduce travelling time as she commutes daily from Seremban. With activities and therapy to keep her son, Mukkammil Aqeel, four, occupied daily, she is at peace.

There is no doubt these parents are banking on the learning lab to be successful and sustainable. This is why they are rallying behind Hasnah.

Dr Hasnah Toran welcomes support for UKM’s Learning Lab on Autism. She can be contacted at 016-681 1560 or e-mail: hasna1@yahoo.com. One Voice is a monthly column which serves as a platform for professionals, parents and careproviders of children with learning difficulties. Feedback on the column can be sent to onevoice4ld@gmail.com. For enquiries of services and support groups, call Malaysian Care (03 9058 2102) or Dignity & Services ( 03-7725 5569).