THE number of diagnosed autistic children in Malaysia has been increasing steadily, at 5% in 2021 – from 562 children in 2020 to 589 in 2021. However, due to a lack of awareness and understanding, many individuals with autism in Malaysia often face challenges in accessing the support and services they need.
Diagnosing autism in Malaysia can be challenging due to a lack of trained professionals and resources. Parents have complained of having to wait for months to get appointments with developmental pediatricians even at private hospitals to get their child diagnosed.
Moreover, many families may not be aware of the signs and symptoms of autism, leading to a delay in diagnosis. In addition, cultural attitudes towards disability and lack of understanding of autism can further add to the challenges faced by autistic individuals and their families.
Unfortunately, some parents may be in denial about their child’s autism diagnosis, leading to a postponement in seeking support and treatment. This can have serious consequences for the child’s development and well-being. To address this issue, it is important to increase awareness about autism and to educate parents about the signs and symptoms of the condition.
In addition, individuals with autism in Malaysia also face other challenges, such as bullying, discrimination and limited job opportunities. It is, thus, crucial to raise awareness about autism and promote inclusion and acceptance of autistic individuals into society.
Despite the challenges, there have been efforts to provide support and services to individuals with autism in Malaysia. For example, there are schools that specialise in educating children with autism and organisations that provide therapy and support for individuals with autism and their families. However, access to these services is limited, and many families struggle to afford the cost of therapy and support.
The cost of caring for a child with autism can be significant, particularly when it comes to access to specialised education and therapy services. This can be a major burden on families.
Another challenge faced by parents of an autistic child is the lack of specialised childcare services. Many daycare centres and schools in Malaysia may not be equipped to provide the necessary support and accommodation for autistic children, leaving parents with limited options for care.
Lack of affordable childcare services
Raising any child is expensive, but the cost of raising a special-needs child can be more daunting. For example, the average monthly fees at a full-time private centre for autistic childcare can cost between RM1,000 and RM4,500 or more per child, which can be difficult for parents who are financially tight. This can be more expensive at therapy centres located in main cities with high cost of living, such as Selangor, which has the highest rate of special-needs students registered as persons with disabilities.
Placement in national schools that are subsidised by the government is limited and mostly unavailable in rural or suburban areas. The need for affordable childcare services for autistic children in Malaysia cannot be overstated. Without access to specialised care and support, children with autism may face developmental delays and difficulties in social interaction. This can have a profound impact on their future and well-being.
According to Ipoh Hospital Paediatric Department consultant community paediatrician and head Datuk Dr Amar-Singh HSS, many disabled children struggled because of the inevitable impact of Covid-19, and urges the government to allocate budgetary provisions in an effort to assist the middle- and low-income families. This is because of the high development costs for disabled children, including for domestic helpers, nurseries, special education, special diet, daily necessities and insurance.
The lack of affordable childcare options can place a major strain on families, who may need to take time off work or arrange for alternative care arrangements.
The government has taken some steps towards addressing the needs of individuals with autism, such as launching programmes and initiatives aimed at improving access to services and support. However, there is still a long way to go in terms of providing adequate and accessible support for individuals with autism and their families in the country.
To address this, there is a need for government support and investment in specialised childcare services for children with autism. This can include funding for the development of specialised daycare centres and schools, as well as providing subsidies and support for families who require these services at private centres.
Based on the Special Education Data 2020, there were approximately 200,004 autistic children registered as persons with disabilities with the Social Welfare Department. Of these, only around 93,951 students were enrolled for the Special Education Programme at national schools.
There may be thousands of special children who remain undiagnosed, especially in rural areas. For now, allowances are only provided for those who have been registered as persons with disabilities and enrolled at national schools.
Due to the limited quota for enrolment at these places, it is imperative to ensure that these services are accessible and affordable for all families, to lessen their financial burden.
Childcare subsidies for persons with disabilities should be given for private centres, while more government-run preschool should be constructed, charging minimal fees. The financial aid should be extended to parents with special children regardless of their financial situation.
Another important step towards addressing the need for affordable childcare services for autistic children is to provide training and support for childcare providers.
According to a research in 2019 by Universiti Teknologi Mara, Faculty of Business and Management senior lecturer Norliza Saiful Bahry, due to the high school fees, both parents of autistic children need to work to earn extra cash.
In Malaysia, therapy for autistic children is usually expensive as some of the programmes require trained and qualified teachers specialising in early intervention, such as physiotherapy, speech and behavioural therapy, among others. By equipping daycare centres and schools with the necessary skills and financial resources, we can ensure that these children receive the care and support they need to reach their full potential.
In conclusion, the autism spectrum disorder is a complex condition that affects individuals and families in different ways. We need increased awareness, understanding and support for autistic individuals.
By working together, we can create a more inclusive society that provides equal opportunities and support for individuals with autism and their families.
Raising awareness about autism among parents in denial is a critical step towards improving support and outcomes for these individuals in Malaysia.
By investing in specialised childcare services, providing subsidies and support, and training for childcare providers, we can help ensure that children with autism will receive the care and support they need to thrive as well as ensure that families have access to the resources they need.
Assoc Prof Dr Azyyati Mohd Suhaimi, Faculty of Pharmacy, Universiti Sultan Zainal Abidin, Besut Campus, Terengganu. Comments: letters@thesundaily.com
