PETALING JAYA: Although many are familiar with the term “autism spectrum disorder”, also known as ASD or simply autism, behavioural consultant Sitra Panirsheeluam says the complexity of the disorder makes it difficult to understand.
Sitra, who runs an early intervention centre for autistic children, said autism was often misunderstood due to its wide range of symptoms.
“People think it’s easy to train just anyone to treat it. It’s actually very complicated,” she told FMT.
For starters, no two cases of autism are the same which makes it inaccurate to categorise all autistic individuals in one group.
In some cases, low-functioning autistic children may also suffer from mental retardation. On the other hand, she said, many high-functioning autistic individuals could live normal lives without being affected too greatly by their condition.
Here, she said, the role of parents is the key.
“Parents need to broaden their views and try to harness their child’s individual potential,” she said, adding that the condition was not necessarily always a disadvantage.
In fact, she said, given early intervention, many autistic children could develop the skills needed to be completely independent. Such children require dedicated and tailored learning and development programmes which would address their individual needs.
However, Sitra added that even though there can be major improvements in many cases, parents needed to accept that autism was an incurable condition.
According to Sitra, one of the main problems in dealing with autism is the lack of a regulatory body. Although there are many NGOs, clinics and therapy centres, there is no overarching authority.
She said the lack of regulation coupled with the general ignorance of parents who did not know what to do or expect led to many sending their children to centres run by unqualified individuals.
She even warned that some people would take advantage of the demand by charging parents RM10,000-RM15,000 for their services.
Other parents would fall for the marketing campaigns of “supplementary centres” which offered services like general indoor and outdoor activities. She said these centres may only alleviate the child’s symptoms but do not address the root causes of autism.
She also said schools which advertise themselves as “inclusive and integrated” and claimed to have trained special education needs teachers sometimes employ under-qualified individuals for the role as there is no standardised documentation, registered data for background checks or testing requirements.
The assessment and treatment plan
Sitra, who offers consulting for children and their parents, said most people would rely on a paediatrician’s diagnosis of autism.
She warned however that this was usually not as comprehensive as tests run by clinical psychologists, who would assess different aspects of the child such as their cognitive and neuropsychological abilities, adaptive behaviours and emotions.
After that, the clinical psychologist would come up with a validated approach, or an early intervention plan, such as Applied Behaviour Analysis (ABA), which aims to prepare the child for a normal schooling environment.
Based on the psychologist’s diagnosis and recommendations, the intervention plan would be conducted by a trained paraprofessional such as speech, occupational and behaviour therapists.
Before transitioning into school, a paraprofessional would conduct more assessments, such as the VB-MAPP test, or the Verbal Behaviour Milestone Assessment and Placement Programme.
The VB-MAPP test measures the child’s performance, mainly in social interaction and language skills.
Other tests include speech and occupational therapy tests which measure the child’s hand-eye coordination and sensory receptiveness, among others.
Based on these tests, the paraprofessional comes up with what is known as an Individualised Education Programme (IEP), tailored to the child’s capacities and shortcomings. It is a treatment plan or guide, whereby everyone involved in the child’s development – the parents, teachers, paraprofessionals and others – are involved.
The IEP details the short- and long-term goals of the child’s treatment.
Ideally, it includes recommendations for different actions or strategies which change according to the child’s progress.
The IEP should be reviewed every three months to a year, depending on the child and the severity of his or her condition.
The eventual goal is for the child to overcome his or her developmental shortcomings enough to be completely or mostly independent.
However, Sitra said the lack of regulation meant that parents are sometimes unaware of what to look for in a comprehensive IEP.
She called on the government to regulate all centres and to set up child development centres under hospitals to make them accessible.
She adds that this is important to safeguard the interests of not only the autistic individuals themselves, but every other person involved in their development.
Without such intervention, she warned, Malaysia would have a long way to go in terms of autism awareness and treatment.