Sheikh Aiman Najib is 16-years-old. He has sloping shoulders, curious dark eyes, and large ears. He fastidiously threads a bead through a needle and string, but stops suddenly to survey the classroom, swivelling his head around.
“Pull, Aiman,” his teacher says, trying to capture his attention.
“Bah bah,” he replies, staring down at the beaded blue flower, a simple cross stitch that teacher and pupil have been working on.
The teenager is severely autistic, and cannot read, write, or speak. When he opens his mouth, a stream of gibberish flows out. He has been coming to the Nasom Vocational Centre in Jalan Ipoh, Kuala Lumpur since last year.
“He can’t speak, but he communicates in his own way. He can follow basic instructions,” his father, Sheikh Azmir, says. The 50-year-old engineer is happy with the progress his son is making. “He has developed a lot since coming here,” Azmir says. “He is potty trained now.”
Aiman was diagnosed with autism at Hospital Universiti Kebangsaan Malaysia (now UKM Medical Centre) at four. Autism Spectrum Disorder (ASD) is a cluster of neurodevelopmental disorders that impairs verbal and non-verbal communication and social interaction. It manifests itself in repetitive behaviour, sensory issues, and sometimes cognitive delays.
A doctor referred Aiman to the National Autism Society of Malaysia (Nasom), where he attended early intervention programmes from age five.
With 20 centres in 11 states, Nasom is the oldest NGO serving autistic individuals in the country.
In 2004, the Ministry of Health reported that 1 out of 600 children in Malaysia is autistic. However, many experts contest this figure, and argue that the prevalence rate is closer to the rates in developed countries: 1 in 68 in the US and 1 in 100 in the UK.
The Department of Statistics reports 511,865 births in 2014. If one out of 600 children is autistic, then a total of 853 children were born with autism that year. Using the US and UK figures, the number of children with autism rises alarmingly: 7527 and 5118 respectively.
The Department of Social Welfare reports that based on voluntary registration of OKU (Orang Kurang Upaya or disability) cards, there are currently 12,887 individuals registered as autistic (9014 children and 3873 adults).
Since 2004, the Ministry of Health has collected data on the detection of new cases in children below 18 in their facilities. The annual figures show an upward trend.
According to Director General of Health Datuk Dr Noor Hisham Abdullah the increase can be attributed to contributory factors such as earlier detection due to the introduction of screening using M-CHAT (Modified Checklist for Autism in Toddlers), a change in the diagnostic criteria used and increasing awareness among parents and caregivers.
The increasing trend mirrors a global rise in the prevalence of autism. In the US alone, there has been a tenfold increase in autism cases in the last 40 years.
In Malaysia, anecdotal evidence from NGOs, private learning centres, and healthcare professionals suggest a surge in cases.
But with the swell in numbers, is the country equipped to treat and care for autistic individuals?
Nasom chairman Bistamam Siru Abdul Rahman understands the urgent need for more treatment and care facilities. In Nasom’s 29-years’ existence, the NGO has grown to include 20 centres. However, because of limited resources, it takes in 500 students at full capacity.
“I don’t think that [we’re doing enough]. If you take that 1 out of 68 figure, the total government, NGO, and private infrastructure does not take care of that number. So who’s looking after them?” he asks. “On a statistics level, it doesn’t seem like we’re handling the situation.”
Bistamam believes that more health professionals are needed, lamenting their shortage in Nasom.
“We wish we could have specialists and paediatricians, but we don’t. We can’t compete with the private sector. We’ve been losing our psychologists steadily. The first we lost were speech therapists. We don’t have any more speech therapists; we do have a few occupational therapists, but they come and go. Those are the hazards we face.”
At private centres, therapy sessions are charged at an hourly rate, anywhere from RM120 to RM180 per hour. On top of speech and occupational therapy, there are a range of other therapies to choose from. However, the high costs of private therapy is prohibitive, and few parents are able to afford them.
At Nasom, the fees are minimal, around RM300 per month, even though it costs the NGO RM900 to care for each child.
Treatment and diagnosis for autism are most accessible in the Klang Valley. Those from less urban areas are at a disadvantage. They either have to make the long commute to treatment facilities, or wait at hospitals for an official diagnosis. Even in the heart of Kuala Lumpur, parents struggle to get their children treatment, often faced with endless waiting lists for therapy or doctor’s visits in government hospitals.
“This is my biggest concern,” Bistamam says of autistic children in rural areas. “If there’s a high incidence here, there’s going to be a high incidence there. The centres are not there. The way we are developing our 20 centres, we can’t really afford to go on. Over the years, we’ve developed on the basis of where parents are the most organised and shout very loudly for our services. Where there’s a demand for us, so we go there and provide our services. But if they’re not shouting hard enough, we don’t hear them.”
While Assoc Prof Dr Hasnah Toran – a leading authority on autism in the country – agrees that there is a dire shortage of healthcare professionals in the field, she thinks our focus should be redirected to equipping teachers and medical officers with the requisite skills.
“We have less than 300 psychiatrists in the country, and less than 20 are child psychiatrists. It’s around one psychiatrist to 240,000 people,” she says. “We have to empower the physicians to make a call. If they’re not trained to make a diagnosis of autism, then they should be able to make a diagnosis of developmental delay. That way, children can be referred to speech therapists. The earlier the intervention, the better.”
Early intervention programmes are designed to help children reach developmental milestones. Intervention is usually multidisciplinary, targeting a child’s physical, cognitive, social, communication, and self-help skills. “We need more speech and occupational therapists, more interventionists. But to catch up with the demand could take years. Even in more developed countries, there is a shortage,” says Dr Hasnah, the director of Permata Kurnia, a government state-of-the-art centre for autism.
It opened its doors in November last year, initiated by Datin Seri Rosmah Mansoor. Located in Sentul, Kuala Lumpur, the purpose-built centre is equipped with modern therapy facilities, including a swimming pool. The centre runs early intervention and preschool programmes, and also provides community education for parents, teachers, and therapists.
About 250 autistic children – aged two to seven – are getting the intervention they need here. Parents make financial contributions based on a sliding scale: those with a joint income under RM3000 don’t pay, while those with an income over RM15,000 pay a maximum of RM500 per month.
“At Permata Kurnia, we’re disseminating information so that teachers and parents can be empowered. I feel that we need to focus on parents and teachers in school. With teachers, we can train them so that when an autistic child comes to their classroom, they know what to do.”
Like Bistamam, she is a strong advocate for getting parents involved in their child’s treatment.
“I think the key is parents. We need to get parents to have their kids diagnosed. We need to empower them. Research has shown that empowered parents really help their kids.”
Fighting for a chance
Six-year-old Naveenraj is in perpetual motion as he crawls through a green tube, leaps into a ball pit, and powers across monkey bars. In his Permata Kurnia uniform, his small frame belies boundless energy. He attends Permata Kurnia’s pre-school programme.
He is taught by interventionists (teachers) from a curriculum that is tailor-made for each child. In addition to academics, it focuses on socio-emotional development, communication skills, physical and sensory development, and general well-being.
“He was diagnosed at HUKM’s Child Development Centre at four-years-and-nine-months old. They said he had mild autism with speech impairment. The doctor referred him to Permata Kurnia,” his father, S. Yoganathan, says. The 46-year-old works in IT, while his wife Novie Soineh, 31, stays home to take care of the kids.
In the short time their son has been enrolled at the centre, they’ve noticed significant progress in his speech and communication skills. He better verbalises what he wants, and there’s greater clarity in his speech. The transformation has impressed his father.
“Within his class, he has made friends. He can name his classmates, and he can draw their parents’ cars,” Yoganathan says. “We couldn’t even think of sending him to mainstream Standard One before Permata Kurnia, because he couldn’t talk, he couldn’t even interact with us. But now we think he can go to school.”
For Yoganathan and Novie, the aim is to have Naveenraj placed in a mainstream class next year. Permata Kurnia has assessed him as meeting the requirements of a Standard One pupil.
“Our target for the kids is mainstream education,” Dr Hasnah says. “We want them to go to mainstream classes, or if they can’t, to go to PPKI (Program Pendidikan Khas Integrasi or Special Needs classes) in mainstream schools.”
Being in a mainstream class, where he can mix freely with his peers and learn at their pace, would be a major achievement for Naveenraj. Mainstream schools, however, have been less receptive, preferring to place qualified autistic children in Special Needs classes.
Children in these classes learn at their own pace, according to their individual abilities. Yoganathan fears that his son will miss out on better learning opportunities if he is placed in a Special Needs class. With a small group of other parents, he has gone to primary schools to champion their children’s cases.
“So far, we’ve gone to 20 schools. It’s hard to get schools to accept autistic kids into mainstream classes. Headmasters want to help, but they’re bound by regulations,” Yoganathan says.
Empowered parents banding together to expedite their children’s education is encouraging, because it demonstrates the power parents have to shape their children’s lives. For autistic children, parental involvement is even more critical, since they require more one-on-one attention.
Yoganathan is committed to his child’s cause, determined to give Naveenraj the education he deserves. When Naveenraj was younger, he signed up for a speech therapy course. In between the long waits for therapy sessions, he applied the methods he learned on his son. The parents noted “tremendous” improvement, as Naveenraj slowly came out of his shell.
But for other parents, formal education is not the end goal.
At Nasom’s Vocational Centre, Aiman is hopping on the balls of his feet, impatient for lunch. He lines up obediently, first in the queue. He looks engaged and present, rare for a boy usually lost in his own world.
“We consider ourselves lucky compared to others,” Azmir says. “I hope one day, when he can no longer attend Nasom, he can go to another vocational centre. We want to get him working, to do something.”
To contact Nasom, go to nasom.org.my or call 03-7831 7928. To contact Permata Kurnia, go to programpermata.my/kurnia or call 03-4026 8200/8201