THERE is still much we don't know about autism. It's a condition that needs more research given its complexities and the huge impact it has on children and their families.
In Malaysia, according to Health Ministry data, 589 children aged 18 and below were diagnosed with Autism Spectrum Disorder (ASD) in 2021 — an increase from 2020's 562 children, says Autism Behavioural Centre (ABC) director Charlene Marie Samuel.
However, this could be an underrepresentation of the actual number of children diagnosed yearly, she adds.
Most children here are usually diagnosed between the ages of 2 to 3.
Charlene's interest in the field of autism services began during her time as an Applied Behaviour Analysis (ABA) therapist. ABA is a science of teaching that uses the principles of reinforcement to shape behaviour and learn new skills.
Autism is a spectrum disorder, explains Charlene, so diagnosis can be challenging.
"It is quite clear when diagnosing a child with moderate to severe ASD as the signs and symptoms are prominent. For children who are mildly affected or high-functioning, however, diagnoses can be missed or only identified later in life when the skills of the child do not match the demands of their environment, such as in school."
Unfortunately, in Malaysia, lack of experts in this field in public hospitals has led to many parents enduring a long wait for an accurate diagnosis of their child.
Charlene points out that this is the case even in the private sector.
The wait list is usually one to two years and many specialists are no longer accepting new patients due to the incredibly long wait list and the need to continue supporting existing patients.
But early identification is crucial. To address this, ABC provides free autism screening for children aged 16 to 30 months all year long.
Through a simple questionnaire with parents, they can determine if there are delays in the child's development and if autism red flags are present early on.
"Through these efforts, we hope to encourage families to start intervention early," says Charlene.
While early intervention is crucial, many parents also face the added challenge of financing the therapies their child requires after diagnosis as the cost of such services can be high.
Charlene says parents in such situations can try to access non-governmental organisation and government-run programmes, but there is often a waiting list for enrolment for families looking for intensive, one-to-one services to better cater to their child's unique profile and needs.
At the moment, there is little support from the government. Hence families often self-pay, she adds.
"It's a chicken and egg situation. Policies are built around the needs of people, but at the moment, ASD reported rates among children are minimal, which leads to a lack of attention, efforts and funding towards subsidising therapy services or providing financial support for families with autistic children."
When parents first receive the diagnosis for their child, they often feel helpless and unsure of where to seek help.
Charlene says there needs to be an official resource facility available for families of children with ASD to better understand the condition and to be directed to interventionists who can provide the necessary assistance.
The sad truth is that if families are unable to access or afford therapy, the child with ASD is often left at home without access to intervention, further worsening their condition.