Thursday, September 25, 2008
Wednesday, September 24, 2008
The National Autism Society of Malaysia is on a fund-raising campaign to finance projects that will benefit the rural poor.
HIS hands bear the marks of scratches and bites. Occasionally, spits and kicks land on him, too. But Ignatius Lee who heads the National Autism Society of Malaysia (Nasom) psychology team, is unperturbed.
In most cases, he says, it is because the persons venting their anger on him are overwhelmed by their surroundings. “Unable to make sense of what is happening and lacking the means to communicate their frustration, it is not unusual for some individuals with autism to react in such a manner,” Lee explains.
But with care and intensive interventions, hand-biting and meltdowns can be reduced significantly, he reasons. “We help them deal with anxiety by teaching them coping skills and anger management.”
A brain disorder, autism affects learning, speech, body movement and social behaviour. In Britain, one out of every 100 has autism, while in the United States, the ratio is 1:150. More males than females are diagnosed with autism, with a rate of 4:1.
According to Lee, the ratio in Malaysia is somewhere between that of Britain and the United States. In any case, Malaysia follows the global upward trend.
In the last six years, there has been a flurry of activities since Teh Beng Choon took over as president of the non-profit organisation. Established in 1987, Nasom has since grown to a membership of over 500 families.
Teh, a parent to an autistic teenager, says Nasom hopes to reach out to as many families as possible. “We hope to improve the quality of life of those with learning disabilities and their families by providing critical services,” he says.
Assessments and diagnosis are available at its one-stop centre in Jalan Pahang, Kuala Lumpur. Previously, parents had to go to general hospitals for a diagnosis and the waiting period could be up to six months.
With the one-stop centre which Lee heads together with his team of two psychologists, one speech therapist and two occupational therapists, the agony has been cut short to a few days. “We devote 15 days a month to see clients,” he says.
This is in addition to his monthly nationwide travels to monitor the progress of Nasom’s 16 centres. Two more are in the pipeline: one in Terengganu and another in Kelantan.
Training teachers and parents in behavioural management therapy to help persons with autism response appropriately, is part and parcel of Nasom’s intervention programme.
Speech therapy and other communication strategies are employed to help with verbalisation. As some on the autism spectrum disorder have poor body coordination and experience sensitivities to light, sound or touch, Nasom has made available workshops on sensory integration therapy.
Nasom is also actively engaging the Education Ministry to support its Inclusion Programme whereby autistic students are integrated into mainstream national schools. At present, the onus is on Nasom to enlist teacher aides to help students cope with the demands of school. Admission to school is at the ministry’s discretion.
“All students, irrespective of their disability, should be given the right to participate in an inclusive education,” Lee contends.
Notwithstanding the challenges that come with the already stretched resources and shortage of staff, Lee stresses that it is Nasom’s policy not to refuse anyone who turns up at their doorstep. This is certainly comforting news for families, especially those who live in rural areas and lack the financial means to support their special needs children.
Lee cites the case of Azri Azmi, 15, which was highlighted by The Star earlier this year. Azri lives in Sanglang, Kedah. He has been caged up for the past five years by his parents as they are unable to control his behaviour.
Poverty, the failure of the doctor to give Azri a proper diagnosis, and the absence of interventions, had worked against Azri. To compound the situation, he was denied a place in school because teachers found him uncontrollable.
His situation remains bleak, says Lee who visited the family following the news report. As a prawn catcher who earns maximum RM40 a day and with only a motorbike at his disposal, Azri’s father finds it impossible to send him to Nasom’s centre in Alor Star which is 40km away from their village. So Lee is looking for sponsors so that the likes of Azri can have a chance to receive the necessary interventions. Until then, Azri who has yet to develop speech, continues to be caged in his home.
“There are many other cases where families are too poor to help their learning disabled children,” observes Lee who has a masters in psychology.
Reaching out to poor, rural families is a pressing matter and Nasom is seeking generous donors as the RM13.8mil funding it secured from the government three years ago is unable to sustain its long-term programmes.
“We are operating with an annual expenditure of RM3mil. Even so, it is on a make-do basis. Ideally, we need RM15mil per annum, out of which RM9mil will be allocated for recruitment and training of teachers,” says Lee.
Like all NGOs providing services to the community, Nasom is hard-pressed for trained staff, notes Lee. Under ideal conditions, owing to the diverse and differing needs of persons with autism, the ratio of teacher to students should be 1:2. But Nasom has on the average, two teachers to eight students.
Lee who had worked for eight years in the Philippines with street children prior to his employment with Nasom three years ago, made the following observation: “While each group has its own issues, ultimately, they all need love. Persons on the autism spectrum disorder may not relate or articulate as well as others but they know when people care for them.” Therapy without the heart is ineffective, he reckons.
Lee hopes that Malaysia’s level of provision for the special needs community will be raised to one that is at par with such countries as Australia and New Zealand.
Help at hand
Nasom headquarters: No 4, Jln Chan Chin Mooi, off Jln Pahang, Kuala Lumpur ( 03-4022 3744 / website: http://www.nasom.com.my/ / e-mail: firstname.lastname@example.org)
Nasom secretariat: 35A, Jln SS21/37 Damansara Uptown, Petaling Jaya (03-7710 4098).
Nasom-Kiwanis One-Stop Centre: 340, 1st & 2nd Flr, Jln Pahang, Kuala Lumpur ( 03-4023 6698). Here, assessments, training and therapies are carried out.
To help persons with autism live independently, Nasom recently set up its Group Home at Bandar Puteri Klang, Selangor (e-mail: email@example.com)
Besides the venues in Kuala Lumpur and Selangor, the other Nasom centres are located in Penang ( 04-6587034), Ipoh ( 05-5483570), Seremban (06-7674400), Alor Star (firstname.lastname@example.org), Butterworth ( 04-3232252), Malacca ( 06-2882518), Muar (06-9533544), Kuantan ( 09-5671070), Miri ( 085-653712) and Segamat.
Nasom has three Autistic Adults Training Centres: Jln Kuchai Lama, Kuala Lumpur ( 03-79843942), Klang ( 03-51619767) and Jln Pahang, Kuala Lumpur ( 03-40237698).
MISSION STATEMENT :
To equip Autistic children with the required skills to lead meaningful and independent lives within Sandakan society and to raise awareness among the public on autism.
+To expose the school community and the general public to autism in our effort to raise awareness via the creation of a website, so that the younger generation and the public may be more sensitive to the needs of these strata society.
+To help the autistic children, parents, teachers and the centre obtain a better understanding about Autism by providing any resources at the website on the subject.
+To give funds to the centre, so the teachers can get proper training in the future.
+To get the school community to contribute in helping the autistic children, through voluntary work such as charity work (cleaning and mural painting) and activity (mini concert) to raise fund for the centre.
+To change mindsets of every person in accepting autistic people in their community, so that they too feel loved and accepted as a contributing part of the society.
+To raise funds to improve the facilities of the centre.
+To create an awareness of the team members and the school community in general, of how much we should appreciate our lives and be grateful for it.
+To bring light to the children who are developmentaly delayed by having fun with them through activities.