Alrite programme director S. Mishatini teaching a non-verbal child with autism alternative ways of communicating.
Children with autism come to S. Mishatini’s newly-opened centre to play. The facility has an open space, with cheery walls and clusters of activity areas. Every day, Mishatini and another teacher work with the children to encourage them to engage in play because it is crucial to their development.
“Play does not come naturally to children with autism. They can be obsessive, rigid and stereotypical in their play, so they’d like games like puzzles. They usually lack pretend play, so we encourage them to do that because it helps to develop their communication and socialisation skills,” says Mishatini, who quit her job in the shipping line to pursue her passion for helping children with autism.
Autism is a complex developmental disorder which leads to communication, sensory, social and learning disabilities.
Mishatini started out volunteering part-time at an NGO for children with autism. Fuelled by a deep curiosity about the disorder, she decided to learn more about how to help, and enrolled in the University of Manipal, India, where she graduated with a diploma in special education. Upon her return to Malaysia, Mishatini set up Alrite, a centre “to challenge the challenges of autism”.
“This is a play and achievement centre, and my focus is to help children work on their communication, socialisation and play skills – areas in which those with autism need the most help. Literacy comes after that,” says Mishatini, 34, who has students aged between four and 12.
Most children with autism take time to develop their verbal and language skills, and Mishatini teaches them different ways of communicating their needs by employing augmentative and alternative strategies. She also uses the STAR programme, which helps children develop their expressive and receptive language, social interaction, communication and play abilities.
In education for special needs children, the emphasis firstly is for them to learn how to learn. Children developing normally learn intuitively; they have the prerequisite skills for learning, such as focus, compliance, eye contact and listening. Most children with learning disabilities need to first be taught these skills.
“We look at the children’s strengths, too. They are good at rote learning, and can learn in chunks. They are also visual learners and have good memory.
“In my experience, children whose parents are accepting of their autism progress faster. Autism is not curable, but it is treatable. There is a significant difference between children who have undergone therapies and those who have not,” says Mishatini, who believes that parents’ attitude greatly influences their children’s progress.
National Autism Society of Malaysia (Nasom) chairman Bistaman Siru Abdul Rahman is also convinced that parents’ participation is crucial in helping children with autism learn. He stresses the importance of partnership with parents, and engaging them in playing a more active role in their children’s development.
“We can only do so much for the children at our centres. The work has to be continued at home for there to be progress. Otherwise, it’d be frustrating. It is difficult and challenging, but fulfilling nonetheless,” says Bistaman, 63, who first got involved with Nasom 25 years ago to seek ways to help his late son.
Since then, there has been growing awareness and parents have been able to access more services and information. Therefore, it is all the more important for Nasom to work closely with parents.
“We are moving towards one-to-one sessions with the children, accompanied by their parents. It is to cater to the child’s individual needs because every one is different, and to involve the parents directly in the process,” says Bistaman.
Nasom runs 20 centres for children with autism throughout the country, and it is also part of the Asean autism network. The NGO provides a wide range of services, from diagnosing, assessment and evaluation to early intervention programmes that include therapies to counselling for parents and families. They also run a transition programme to prepare the children for formal schooling.
Bistaman says Nasom’s support services have improved over the years as they have invested in training and upgrading their teachers’ skills.
“Early intervention is important, and we see the difference it makes. Speech and language development is important, and we try to help our non-verbal children develop that. These days, our techniques have improved tremendously and we can generally get most children to verbalise within six months of therapy,” he says.
Nasom also provides life-long support for those with autism, so they also have programmes to cater to teenagers and adults.
“About 25-30% of our pupils are pre-teens, and their needs are different as they grow. They need help dealing with issues, such as their sexuality,” adds Bistaman. This includes pre-vocational programmes to teach teenagers with autism independent living skills, as well as social and trade skills.
For those above 14, Nasom offers vocational programmes to equip them with income-generating skills such as baking, food preparation, sewing, handicraft and data entry. They have also set up sheltered workshops.
“The long-term question for all parents with autism is still who would look after our children when we are gone?” notes Bistaman.
Nasom has embarked on a programme to help young adults with autism live independently, away from home. They have set up group homes in Klang, Selangor, where these young adults live together with a supervisor, Mondays to Thursdays.
“They go home on the weekends, but during the week they learn to manage on their own, under the supervision of a warden. It is an ongoing project, and we are still sorting out the issues as we go along. One of the biggest challenges is retaining supervisors as it is strenuous on the caretakers. But it is an important programme because it helps the adults with autism learn to live independently. It also gives parents some respite, which is important,” adds Bistaman, who stresses the need for a system that looks after those with autism after the demise of their parents or caretakers.
The challenge for this NGO run by volunteers is in addressing and meeting the needs of a growing number of autistic individuals.
In recent years, Nasom has seen a 30% increase in the number of those seeking its services.
“Our challenge is in raising funds as we need to keep the centres open and running. We cannot raise our fees as they have to remain affordable. The other challenge is in continuing the advocacy to create awareness,” says Bistaman.
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