KUALA LUMPUR – For the B40 income group, raising a child with autism intensifies the financial and emotional strain already exacerbated by high living costs.
Autism Spectrum Disorder (ASD) brings profound challenges, demanding resources and support that are often inaccessible to families earning less than RM6,400 a month.
The overwhelming burden leaves parents grappling not only with the high costs of therapy and specialised care but also with the day-to-day expenses of maintaining their households.
The cost of therapy for autistic children can range from RM4,500 to RM15,000 per month, a financial burden that is out of reach for most B40 families.
The lack of regulated, affordable therapy options forces many parents to turn to unregulated services, which may not provide the necessary support and can be harmful.
Federation of Reproductive Health Association chairperson Dr Kamal Kenny noted that caring for a child with autism is a full-time commitment.
He said this often requires one parent to fully commit to taking care of the child, resulting in a single-income household.
“Some children may require only minimum support, as they are highly functional.
“However, when the child is non-verbal and highly dependent on an adult’s support to operate their daily functions, they would require more extensive programmes.”
He said the stress and anxiety stemming from inadequate support can lead to chronic mental health issues for parents.
Programmes for autistic children are available, but parents must be proactive in seeking resources. This often means investing time and finances to access the nearest therapy and support services for their child.
Unfortunately, this is a significant barrier for many B40 families, particularly those in rural areas where such services are scarce.
“We need to realise that a child with ASD is no different than a typical child,” Kamal said.
“Parents should not view their child as having a disability but as individuals with different abilities, where with proper guidance and intervention, they can be very talented and intelligent individuals.”
ASD is a complex condition that leads to challenges with social communication and interaction, and repetitive behaviour.
Autism is also often misunderstood and people with the condition usually face a stigma, which can harm their overall wellbeing.
Beatrice Leong of the Autism Inclusiveness Direct Action Group said that the support system for ASD children must be holistic and inclusive.
“Supporting an autistic individual isn’t just about therapy. It has to be inclusive to all across all economic sectors,
“It’s about fostering a community that embraces and supports parents, siblings and the entire family.
“True support goes beyond clinical settings as it involves building an inclusive environment where everyone can thrive together,” she said.
“When the stress of care work is unsupported and neglected, many parents experience mental health challenges of their own,” she said.
“They (parents) also face community backlash when they are burnt out and seen as incompetent, forcing these parents into isolation.”
According to the Health Ministry, in 2021, a total of 589 children aged 18 and below have been diagnosed with autism, up five per cent from 562 children in 2020. – June 23, 2024