In 2020, at least 20,000 children are with disabilities, including children with developmental delays such as autism spectrum disorder (ASD)[1].
The National Autism Society Of Malaysia (NASOM) estimated that 9,000 children are diagnosed with autism every year.
The number, however, could be underreported as guardians hesitate to register their children as Person With Disabilities or children are unknowingly mistaken as slow learners.
The journey from recognising the signs and symptoms of autism to getting a diagnosis and ensuring the child receives necessary therapy and an environment to thrive, is one riddled with challenges – both on the parents or guardians and the child.
One challenge that stands out more than the rest is the financial costs of caring for an autistic child. Even though there isn’t an exact breakdown of autistic children belonging to low-income households, previous findings[3,4] have shown that caretaking for an autistic child increases the burden on families. The geographical location also plays a role in the availability of help and support parents are provided.
Lack Of Information Lead To Inaction
Emily Loo sprung to action when she felt something was amiss with her child, J. She went to various clinics in 2010 to assess her three-year-old child. The family travelled to Singapore and found the answer after full diagnosis and treatments on J. It was S$600 (around RM1858) well-spent [5].
However, not all cases of autism were detected early on. Some barriers come with the place the children are born. A study conducted in Kelantan among autistic caregivers found that parents did not seek information when their children exhibited speech delay. Delay in speech is ‘normal’ amongst children, especially for boys, a belief that is attributable to their cultural and social norms[4].
Before this, we tended to ignore it, and it is common; you know how the elderly are . . . even my mom said, “That is not unusual. Even your siblings, some of them were like that too.” So we think this is normal. – A 39y/o businessman with an autistic child[4]
The term autism was unfamiliar to parents and due to this, seeking information and help from the appropriate healthcare practitioner came too late.
Four years ago, I had my neighbour looking after my son. I told her that my son would not go anywhere; he would only sit there. She said he could be autistic. I asked her, “What is that?” I did not know what autism was. – A 40y/o gym trainer with an autistic child[4]
Once the doctor had diagnosed their children with autism, the parents were left alone to formulate the next step.
Even the doctors did not know what to do. They did not know much about autism. The only thing they know is sending our child to therapists. – A 38 y/o Malay barber with an autistic child[4]
The lack of information on all parties involved only delay the intervention needed for the autistic child. The Ministry of Education’s Special Education Integrated Programme (SEIP) is part of the early childhood intervention strategy. Despite the efforts, many living in smaller districts are left out and general awareness of these interventions are low[6].
Emily, on the other hand, had her head in the game. J was placed on biomedical treatment upon receiving the diagnosis. Additionally, J visited a doctor for medical consultation and supplement prescription costing RM1,800 a year. J attended a private special needs school costing RM4,000 a month for a half-day programme and every six months, an additional RM1,500 on miscellaneous charges[5].
Mountainous Cost When Caring For Autistic Children
More centres and special education schools catered to autistic children are flourishing in Klang Valley as awareness increases in urbanites families. Parents are dedicated to providing only the best for their child’s improvement. However, the same cannot be said in rural areas.
Children with autism are also encouraged to attend therapies and classes to help them cope with the disorder and learn to be more independent. One of the most common therapies is Applied Behavioural Analysis (ABA) therapy. J attended home-based ABA therapy that cost RM650, with two therapists, two hours per session, four times a week. Seeing improvement in J, therapy hours increased to three therapists, six hours a day, five times a week[5]. Add up the costs and it becomes an exorbitant fee that not many can afford to pay.
Families in low-income households rely on services provided by non-governmental organisations such as IDEAS Autism Centre with a minimum fee of RM300 monthly[3] or therapy at NASOM with an hourly fee of RM120[7].
On top of that, there is occupational therapy to improve fine motor skills and daily living skills adding to the mounting costs. These sessions add another RM480 for four sessions to the monthly bill. Sometimes, a child may also require speech therapy to express themselves better; J attended weekly speech therapy with a monthly cost of RM540 plus a one-time assessment fee of RM350[5].
Additional therapy such as speech or occupational therapy could set back the finances of B40 families. Research shows that the monthly cost of occupational therapy for an autistic child takes up at least 13% of a B40 family’s household income[3].
Emily’s final amount of tending to her autistic child was RM96,700 yearly in 2016 and the amount may have increased due to inflation. Emily can provide the best for J, however, many parents in the rural areas and low-income households experience financial hardships due to the high price tags attached to education and services for their autistic children.
It is a struggle because we’re trying to pay off children’s fees that are so expensive, on top of our monthly expenses. It’s a struggle. – A 38y/o housewife[4]
Opting For Second Best Has Its Own Setbacks
A family living in Kelantan would have to travel further, sometimes to Kuala Lumpur to attend therapies, racking up more expenses. Government hospitals do provide the necessary services free of charge, however, to secure an appointment is an ordeal that may take months.
One thing we can see in Kelantan is that there is no specific place for parents with autistic kids. In Kuala Lumpur, there are many specific schools such as Permata Kurnia. – A 51 y/o physiotherapist[4]
With no option for private special needs in rural areas, families send their autistic children to government pre-schools. The teachers, however, are not equipped to handle the needs of autistic students.
We sent him to a government kindergarten. The teacher could not handle him. The teacher said he could not sit still. The teacher said that he was not disturbing, but he wandered around. Then the teacher said that he did not fit in at that school. – A 36y/o assistant auditor[4]
Unfavourable circumstances and poor learning environments have detrimental effects on the child and the ability for them to learn and grow.
The teacher doesn’t know how to evaluate, and she doesn’t know whether my child can read or not. She seems to have taught my child the same thing as kids with Down Syndrome. – A 51 y/o physiotherapist[4]
The Intolerance Of The Larger Society
Parents of autistic children in rural areas are disheartened by the lack of understanding by their extended families. The mistreatment and harsh words stemmed from the lack of knowledge and the imposed stigma on the autistic child.
When I was packing up, I heard everyone (the relatives) scolding my son (with nasty words) like ‘I will whip you.’ Some even shook him.” – A Malay housewife, 37 [4]
Not just that, the surrounding society has a long way to go from being tolerant to autistic children. In 2018, a family with an autistic child in Kuala Terengganu was forced to leave their rented house [8].
Their son, Rayyan, often exhibits temper tantrums and cries, commonly experienced by children in the spectrum. However the nearby residents have had enough, the father, Kamal, worked as a mechanic earning only RM1500.
The main problem now is money. I once told my wife ‘if I have money, I would also call a lorry to bring the goods and move’. But I would also have to pay a deposit if we were to move. My salary is small, but fortunately, my wife helped me sell kuih to ease my burden. – Kamal, father to an autistic child in Kuala Terengganu [8]
With the mistrust in educators, lack of understanding from the larger society and the full support autistic children often need, families have opted to have a sole breadwinner in the household. This was the tough choice that Teoanna, a mother to two autistic children, had to make. She was a graphic designer before the diagnosis of her daughter, Abrianna and her son, Aaryn, propelled her to stay at home [9].
Living on a single income with children who need constant supervision and help can be draining. They needed help and I desperately needed to find help. – Teoanna James, a mother to two autistic children[9]
After her son was diagnosed with autism, Teoanna suffered from depression and her marriage was strained, coupled with the tight finances.
That’s when the depression sunk in. For a while, my marriage was strained. Samuel (her husband) threw himself into his work while I went deeper into depression. I had three toddlers by then. Two were diagnosed with autism and my third child, Alyssa was also showing the same symptoms despite being normal. – Teoanna James, a mother to two autistic children[9]
Parents, usually mothers who have the heavier responsibility of caring for their autistic child, often express fatigue and disappointment with the lack of support of their partner in parental responsibilities. Sometimes the only solution is a divorce and the mother usually takes over the parenting responsibility.
I asked for a divorce because he never comes home, and even if he does, he only comes home at night for two hours. That is why I said I am better off on my own. So, I take it. Let us just go our separate ways because when my son is sick, it has always been me alone. – A Malay housewife, 29[4]
The pandemic, however, may have regressed the progress of children. With the closure of centres, caregivers would have to devote more time to practising ABA techniques with their children. But, could they spare more time when survival and making ends meet is at a higher stake?
The Need For More Government Aid
Families with autistic children, registered as Orang Kurang Upaya (OKU) are given a RM150 monthly allowance, but that is inadequate. Some families did not benefit from the scheme due to their lack of knowledge of available aids and some decided against labelling their child as disabled.
Adding to this, families categorised in the middle-income threshold, or the M40 have expressed their dissatisfaction when it comes to the minimal support.
Siti Aishah, 50, quit her job as an accounts clerk when she gave birth to the first of her three autistic children. The family currently relies on her husband’s monthly income. Since her husband’s monthly income sees an increase up to RM 5,000, the household was deemed ineligible for targeted government aid[10].
At the same time, Aishah is also suffering from a recurrence of a previously diagnosed breast cancer[10].
After the first year of BR1M, my husband got a raise to RM4,100 and they told us we no longer qualify despite several appeals. My children still need diapers and special care. How can we still be considered middle income when the only dates we go on are to have roti canai (prata) breakfasts? – Siti Aishah Abdul Rahim, mother of three autistic children[10].
The Greatest Worry Held By Parents With Autistic Children
There have been a growing number of organisations attempting to reduce the financial burden to ensure that autistic children can grow regardless of their financial background.
For example, Ideas Autism Centre, established in 2012, provides affordable care to autistic children up to 9 years old. The centre provided the required slash on cost with parents paying only RM300 from the total cost of RM3000 has given families’ bank accounts a much-needed breather[3].
Teoanna and her family have also received the help they needed through an Early Autism Project scholarship[9].
But, parents with autistic children have one crux in common, what does the future hold for their children? The challenges of tending to autistic children only expand as they become older.
My concern now is his life direction. He is already 14 years old. What will happen after he finishes school? I am constantly thinking about his future. If possible, I don’t want him to stay at home, but to go out there and do something for himself. To freely choose his passion for cooking. That is what I am aiming for at this moment. – A 54 y/o Malay housewife[4]
The Ministry of Education has encouraged autistic children to be part of mainstream education, which caused more discomfort to the students and the educators due to the lack of awareness. There have been suggestions for embedding TVET education for autistic students, but no concrete plan is in place.
People with autism require the nudge and attention to push them further to excel. We have read the success stories of the Autism Cafe Project, the love of the father who provided employment and means of income to his son also to the autistic individual in the nation.
There is also hope on the horizon that may ease the worries of parents. In 2021, the National Autism Society of Malaysia (NASOM) launched a Certified E-Commerce Specialist (CES) Level 1 Programme aiming to educate youth with autism with the necessary skills in digital marketing and e-commerce[11]. At the same time, corporate sectors such as Gamuda has established Gamuda’s Enabling Academy to equip autistic youth with the necessary skills for employment[12].
The #JaminKerja initiative rolled out during Budget 2022 aimed to increase the employment of the PWD community in the workplace is a step forward from the government[13]. However, the question remains – are autistic children living in rural areas provided with the same opportunities? How can we increase early intervention for autistic children from low-income households? Can all autistic individuals live an independent and meaningful life in Malaysia?
It takes a village to raise a child. But to a low-income household with an autistic child, their journey is often in a silo, with minimal help from the government and the lack of support from the community.
Explore our sources:
- Department of Statistics Malaysia. (2020). Children Statistics Malaysia, 2020. Link
- National Autism Society Of Malaysia. (n.d). Autism. Link
- S.Chandran. (2016). Financial Burden of Living with Autism: A case study of parents at IDEAS Autism Centre. IDEAS Policy Paper. Link
- W.N.Wan Yaacob, L.H.Yaacob, R.Muhamad and M.Mohd Zulkifli. (2021). Behind the Scenes of Parents Nurturing a Child with Autism: A Qualitative Study in Malaysia. Int. J. Environ. Res. Public Health 2021, 18, 8532. Link
- I.Lee. (2016). Cost Of Autism: Raising An Autistic Child In Malaysia. Imoney.com. Link
- R.Chua. (2021).Special ed: Evaluation time. The Star. Link
- N.Muslim. (2021). COVID-19: Anak-Anak Istimewa Terkesan Dengan Sekatan Pandemik. BERNAMA. Link
- I.S.A.Shuaib. (2018).Keluarga Dihalau Kerana Anak Autisme, Ini Jawab Si Ayah! MStar. Link
- E.Koshy. (2021). Finding hope: A mother’s touching tale about her two autistic children. New Straits Times. Link
- S.Teoh. (2019). Malaysia grapples with poverty and income levels as it reaches out to struggling families. Straits Times. Link
- L.Zain. (2021). The World’s First Certified E-Commerce Programme For Youth With Autism In Malaysia. Ninja Housewife. Link
- S.Yeap. (2017). Gamuda’s Enabling Academy prepares autistic young adults for employment. Options The Edge. Link
- A.Jacob. (2021). Budget 2022 To Integrate PWDs Into The Workforce. The Sun Daily. Link
