EVERY Dec 3rd, the United Nations celebrates International Day of Persons with Disabilities — a day to raise global awareness of disability issues and encourage support for their rights, dignity and welfare.
This year's theme is "Not All Disabilities are Visible". One invisible disability is autism. The new government needs to do more for Malaysians on the autistic spectrum by spreading awareness, understanding and acceptance.
Autistic people perceive, hear and feel the world in unique ways. There is no "cure" for autism and being autistic is a fundamental aspect of one's identity.
According to the National Autism Society of Malaysia (Nasom), one in 68 infants is born with autism and exhibits behaviours associated with autism spectrum disorders (ASD).
Autistic children aged 2 to 6 are typically not afraid of danger, overly sensitive or insensitive to pain, avoid eye contact, have trouble expressing wants or needs, have consistent routines and difficulty interacting with others.
Health Ministry data shows that in the past 10 years, the number of ASD diagnoses has increased exponentially. According to the ministry's 2021 report, 589 children under 18 were diagnosed with ASD, a staggering 500 per cent jump from just 99 in 2009.
Autistic adults continue to be underrepresented despite rising numbers globally. People diagnosed with autism may have been misdiagnosed with other conditions, such as intellectual disability, previously.
Just 500,000 or only 10 per cent of Malaysia's estimated 4.86 million people living with disabilities are registered as orang kurang upaya (OKU) and receive welfare assistance.
That's why Nasom advocates that autism should not be regarded as a rare disease, but a common developmental disability.
Gaps in knowledge also contribute to disparities in the availability and quality of assistance.
One example is the Education Ministry encouraging the participation of autistic children in mainstream education, but failing to provide teachers with resources and training to teach such pupils.
Things are no better in private schools. The number of ASD pupils is often capped and parents have to pay for a shadow teacher.
As for job prospects — a major worry for ageing parents — there have been no attempts to incorporate technical and vocational education and training for autistic children.
If not given the chance to attend school and gain an education or livelihood, what kind of future are they expected to have?
Nasom launched an e-commerce programme to educate autistic youth in digital marketing and e-commerce.
Gamuda's Enabling Academy provides autistic youth with skills needed for employment.
At the grassroots, the Ideas Autism Centre offers affordable care to children aged 3 to 9, with parents paying only RM300 out of a total cost of RM3,000. The Autism Cafe Project is a parent's determination to provide food and beverage training for his autistic son and others.
Program Bantuan Anak Istimewa Selangor provides free services at early intervention centres for special needs children and training for parents.
But these local efforts can achieve only so much, hence the rationale for the government to go beyond a monetary approach.
Under the 2023 Budget, children with special needs will be able to access early intervention programmes, despite a meagre RM5 million to increase the number of OKU taska from 13 to 63.
RM20 million was allocated to upgrade buildings, teaching materials and equipment at special needs schools, plus RM1.2 billion in allowances for OKU and disabled workers.
This will ease the financial burden on B40 and M40 families, but at RM200 (under age 6) and RM150 (age 7 to 18) a month per child, it is wholly inadequate.
More worryingly, many parents prefer not to register their child over fears of social stigma. We need to change this mindset.
Former health minister Khairy Jamaluddin provided a solution in the form of a cabinet paper to set up a national autism council.
Its role would include streamlining education, treatment and post-diagnosis care. It can also seek industry-wide insurance coverage for those with autism.
Khairy also proposed an integrated intervention strategy centred on evidence-based parent training, and the council would act as a platform for the dissemination of autism-related materials to the public.
What is most important is that the council would provide the national support that ASD families desperately need and hold the government accountable.
The writer is the public sector engagement manager at the Institute of Strategic and International Studies Malaysia