28/05/2026

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THURSDAY | MAY 28, 2026

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COMMENT by Dr Yeo Yee Han and Dr M. Lokman Bahar Silent burden of autism caregiving

O NLINE campaigns and public conversations about autism are becoming more visible every year. These efforts are important as they help the public to understand the early signs of autism, the value of neurodiversity and the need for acceptance. However, one important group is often left out of the conversation: the parents and caregivers. Behind every autistic child who is exploring a world that is not structurally or socially built for them, there is often a parent silently carrying a heavy burden. These parents are not only raising their children with love but also managing emotional stress, financial pressure, public judgement and a lack of support services. It is time for autism advocacy to move beyond awareness of the child alone. We must also recognise the struggles of the parents and caregivers. The well-being of an autistic child is closely linked to the well-being of the parent or caregiver who supports them every day. Emotional burden of caregiving Raising a child on the autism spectrum can be a journey filled with unconditional love, patience and hope, yet, it can also come with constant stress and emotional exhaustion. They need to understand their child’s behaviour, manage sensory meltdowns, decoding the non-verbal cues and advocate for their child in schools, healthcare settings and public spaces. Over time, this can lead to burnout and in more serious cases, depression and/or anxiety. Some parents will feel isolated because not everyone understands what they are going through. Others silently grieve the loss of the “typical” parenting experience they once imagined. One of the deepest worries for many parents is the future. A question often remains in their minds: Who will care for my child when I am no longer around? This fear is real and it should never be ignored. Financial cost of autism care The cost of caregiving extends beyond psychological and emotional challenges. More often than not, for many families, autism care can bring a heavy financial burden. Therapies such as occupational therapy,

speech therapy, behavioural intervention and early intervention programmes can be costly. These services are often essential for the child’s development but not all families can afford them. In many Malaysian households, one parent may have to reduce working hours or leave their job completely to become a full-time caregiver. This is often the mother, although fathers also carry significant responsibilities. This results in a drastic economic consequence: reducing the household income at the precise moment when therapeutic and educational expenses are skyrocketing. For lower- and middle-income families, this can be extremely stressful. Public judgement and social stigma Another major challenge faced by parents is public judgment which remains a significant hurdle in Malaysia. A lot of people in our community still misunderstand autism. Consider the common scenario of an autistic child experiencing a severe sensory meltdown in a highly stimulating public space such as shopping mall, restaurant or public event, bystanders may assume the child is being naughty or the parents have failed to discipline them. In reality, the child may be overwhelmed by loud sounds, bright lights, crowded spaces or sudden changes in routine. A meltdown is not the same as a tantrum. It is often a response to sensory overload. For parents, the stares, whispers and negative comments from the public can be deeply painful. What they need in those moments is not judgement but an understanding and empathy. Sometimes, a simple act of kindness can make a big difference. A kind smile, or simply giving the family some space can help reduce the pressure on caregivers who are already doing their best. Gap in support services In Malaysia, support for autistic children and their families remains uneven. While some services are available in major urban areas, families outside big cities often face greater difficulties in getting early assessment, therapy and long-term support. This gap is even more visible outside major

True autism awareness must include parents and caregivers. – ADIB RAWI YAHYA/THESUN

Moving from awareness to action True autism awareness must include parents and caregivers. Malaysia needs stronger action. Policymakers, healthcare providers, educators and community leaders must work together to improve support for autistic children and their families. Caregivers do require mental health support. In Malaysia, counselling services and mental health clinics are available in many Klinik Kesihatan, where parents can seek help, share their struggles and receive professional support. However, many families may not be fully aware that these services exist or that they are meant not only for patients but also for caregivers who are emotionally overwhelmed. Greater public awareness is needed so that parents know where to turn before stress, burnout or depression becomes too heavy to bear. To parents and caregivers of autistic children: Your efforts are seen and your sacrifices matter. As a society, we must build systems that support both the child and the caregiver. Only then can awareness become meaningful action. Dr Yeo Yee Han and Dr M. Lokman Bahar are public health candidates at Universiti Malaya Sabah. Comments: letters@thesundaily.com

urban areas. Compared with many parts of Peninsular Malaysia, where government hospitals, private therapy centres and special education services are generally more accessible in larger towns and cities, many regions across the country, particularly in East Malaysia and rural districts continues to face major limitations in both public and private facilities. There remains a serious mismatch between the number of children who need support and the services currently available to them. For many families living in rural or remote areas, access to care is not only limited by cost but also by distance. Parents may have to travel far to reach government hospitals, assessment services or intervention centres. Even then, public services may involve long waiting lists due to high demand and limited trained personnel. There is also a shortage of affordable early intervention centres, inclusive schools, trained educators and specialised support services. For parents living far from city centres, these challenges are made worse by geography, transport barriers and the uneven distribution of services across the state. This gap must be addressed seriously. Parents and caregivers should not have to struggle alone simply because services are too far, too expensive or too limited.

Education retains its importance in the Malaysian landscape for parents, students and stakeholders. The changes are fast paced with new developments in new fields of study such as cybersecurity, data protection, augmented and virtual reality, machine learning in education, digital education and artificial Intelligence. Leading the way are universities, who are invited to showcase their latest programmes, curriculum and content in our Education Focus for 2026.

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