Trapped by Love - How a Cambodian mother ignored her own safety to care for her autistic adult son despite the growing risks

Sokly Oum, 49, smiles wryly as she wearily falls into a fit of coughs.

Her son, 21-year-old Kevin, is chasing around the house, flapping his arms about as he proceeds to disassemble the doorknob to his bedroom.

He scurries to hide beneath the stairs when Sokly calls for him.

"It was either the door-knobs or the kitchenware"

Upon immediate inspection, most of the doorknobs and locks have been carefully deconstructed and arranged precisely on the table, amongst the carefully-organised groups of house-hold objects that Kevin plays with.

Struggling with her broken English, Sokly motions towards the objects on the table, then to the kitchen drawers which are padlocked, as if to say, ‘it was either the door-knobs or the kitchenware’.

Sokly migrated to Australia from Cambodia in 2000, to join her husband, searching for a better life in this country, like so many migrants.

But when Kevin was diagnosed with autistic spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD) at the age of three, it appeared to Sokly that having the child was a bad decision and that she had reaped “maybe bad karma”.

For those arriving in Australia with poor English skills, navigating the customs of the locals can be frustrating enough.

If you also happen to have a child that doesn’t speak or behave in the way you’d expect, and you’re being told they’re on the autism spectrum, what do you do?

Over the past decade, international research has highlighted a lack of autism prevalence studies outside of the U.S., Canada, and the U.K., citing stigma, limited mental health awareness, and inadequate medical infrastructure as key barriers.

Today, new studies show autism rates are increasing among children from culturally diverse backgrounds, fueled by greater public awareness and improved public health responses to autism.

Additionally, it showed that the prevalence of special health care needs is lowest among Asian Americans with developmental disabilities and are a "double minority" population within the social service delivery system.

Kevin currently attends Holroyd School, a special needs education provider, and sees his paediatrician every three months.

Cambodia's cultural stigmas

He rejected speech therapy, however. When asked why she doesn’t request further assistance for Kevin’s care at home, Sokly replies: “What can they do?”, adding “My responsibility” as she taps at her chest.

Sokly’s attitude demonstrates not only trouble understanding the benefit of services available for Kevin, but also a significant cultural issue that many immigrant families with children on the autistic spectrum face.

When asked about possibilities for Kevin’s care and future, tears well in Sokly’s eyes as she chokes on her words and says, “I will look [after] him forever”.

There is a definite sense that Sokly feels trapped by her circumstance.

Dr. Narith Van, Kevin’s family doctor, says that Kevin’s situation is “near-far extreme”, which means that he will require regular reviews and monitoring into adulthood.

Dr. Van practices in Cabramatta where there is a large Cambodian and Vietnamese community and comments that it is “quite common for children to be diagnosed with autism in [this] community setting” and “because Kevin is very sensitive to noise and does not play with other children, [Sokly] cannot take him to his cousins’ birthday parties…. She does not have a social circle and cannot express her difficulty to friends due to culture issues”.

Feeling shameful about her situation, Sokly says she does not meet with other carers or adequately use government networks for families who have children with disabilities.

Whilst Dr. Van understood the “cultural issues” at play, he expressed his concern that “Kevin is growing into a big man and it is getting dangerous to leave Sokly alone with him” and strongly recommended that Sokly place Kevin in a care home for those with special needs, suggesting that she was risking his long-term future as well as her own safety.

However, Sokly adamantly refused.

A close call at the beach

Just weeks ago Sokly was admitted to the intensive care unit at Fairfield Hospital due to an accident at Windang Beach.

The mother-and-son duo were playing alone in the water when Kevin, who is 6-foot-tall and towers over his mother, climbed onto Sokly and nearly drowned her.

Speech pathologist, Marlene Ly, from Northcott Disability Services in Parramatta, treats children diagnosed with ASD, ADHD and other forms of intellectual delay, with more than 50% of them coming from culturally diverse backgrounds.

She says immigrant parents have trouble understanding the importance and benefits of services due to the cultural stigma associated with disability: “more often than not, families bring in their children for a couple of months expecting their children to be ‘fixed’, and then stop the therapy altogether after seeing no immediate improvements.

We need to change the perception of therapy and attitude toward disability’.

A spokesperson for the multicultural disability advocacy association for NSW (MDAA) said that “there is an abundancy of services available for Cambodian communities but she needs to come to us.”

The need for better access to services

Autism rates are rising among children from culturally diverse backgrounds, driven by improved public awareness and diagnosis.

Despite this progress, families like Sokly’s often face isolation. They struggle between cultural expectations and the need for external support.

The main challenge is not just accessing services, but overcoming the stigma that prevents them from seeking help.