Autism Awareness Month: We are not doing enough  

IN TODAY’S world where the concept of inclusivity and diversity is played on the speakerphones of businesses, governments and global entities, it is disheartening to see that despite best efforts, many voices of those with different abilities fall in the chasm and fail to be heard. 

Autism, also known as autism spectrum disorder (ASD), is a neurodevelopmental disorder that affects social interaction, communication skills, and behaviour. It is important to note that the symptoms and characteristics of autism can manifest differently in all autistic individuals.The spectrum ranges from high functioning autism where individuals are able to carry out daily tasks with a level of ease to low functioning autism where individuals need massive amounts of support in carrying out daily activities. 

In Malaysia, IDEAS Autism Centre reported that over 47,000 individuals are on the spectrum. Additionally, over 9000 new individuals are diagnosed with autism annually yet NGOs can only cater 1,500 individuals at most. This then raises the question: what happens to the remaining individuals on the spectrum? What is being done for them?

Behind these statistics lie personal stories of struggle and resilience. Consider the journey of a parent navigating the labyrinth of accessing support for their child on the spectrum. One too many times the struggles of parents are not seen. Navigating society with children on the spectrum takes strength and understanding from society. Some children are unable to go to malls due to sound and light sensory overload. Some children are unable to show and channel their emotions in a neurotypical way and may express their emotions in a tantrum-like way. These situations can only be understood by parents and individuals who are aware of ASD and the challenges. With the lack of support, parents are left to fend for themselves, falling back to the community of parents with similar circumstances. However, this is not enough. 

There is no one cure for autism but research has shown that with the right early intervention programmes, low functioning autistic individuals have grown to need less support and assistance over time, thus finding it easier to navigate a society that is built on neurotypical norms. Furthermore, at least one research has found that via a 2-year early intervention programme, 14% of children on the spectrum improved exponentially to a point where they were not considered to be on the spectrum anymore. The vitality of NGOs like NASOM, Early Autism Project Malaysia and Autism Behavioural Centre are indispensable in providing life skills, therapy and holistic development of children on the spectrum as part of their curated  programmes.  

Despite their importance, insufficient funds are an  enormous challenge to these NGOs. The lack of resources restricts NGOs from accepting those in need and they have to put the children on an extensive waitlist or reject them completely. Time is precious for autism and the longer children are unable to access development programmes, the more challenging it would be for them to progress. When there is a scarcity of capacity and even a scarcity of programme availability, not much progress can be achieved, especially for low functioning children. 

To achieve better development programmes that are available for all individuals with autism, parties advocating for them must not work in silos away from the government. Malaysia can mirror efforts that are present in Australia or Sweden for example. The National Disability Insurance Scheme (NDIS) in Australia provides support and funding for people with disabilities. The scheme also provides free access to necessary therapies, services, and equipment. Children under 7 years old under the spectrum are also eligible to an average of $16,700 per year where their caretakers can reapply every few years. 

Sweden is also heavily active in autism support. One of the main forms of support is called “care allowance”, which provides additional financial assistance for families with disabled children. Additionally, Sweden also has personalised education plans, therapies, and counselling services for children on the spectrum.

In Malaysia, the 12th Malaysia Plan aims to empower persons with disability  where education, housing and ICT development are areas to be focused on (however, not specific to autism). In the 2024 budget, RM1.2 billion was allocated for persons with disabilities. However, what has been done for autism early intervention programmes or care subsidies?

It is important for the government to nurture the actual needs of the autism community. Many are unable to access early childhood interventions due to the lack of space and lack of resources. Inclusivity in the budget should also be seen in order to provide resources for long-term and holistic efforts for all members of the community. Parents of children with autism feel left behind and extremely alone when comparing the initiatives by other countries. As we observe  Autism Awareness Month, it is vital to spark discourse on the needs and the situation that is present for the community. Awareness of the spectrum has increased over the years but the comprehension and understanding of their needs is still rather scarce. 

Autism does not have  a one size fits all solution and what we know is just the tip of the iceberg. To address the diverse needs of the autism community, the government must significantly ramp up its efforts in resource allocation. Early intervention is key and various programmes must be established for children, teenagers and adults who are on the spectrum.– April 14, 2024.

* Sharanyah Nair currently serves as a Research Executive under the Institute for Democracy and Economic Affairs (IDEAS). 

* This is the opinion of the writer or publication and does not necessarily represent the views of The Malaysian Insight. Article may be edited for brevity and clarity.