'Don’t just stare, give us a smile': A mother’s plea for families living with autism

For Seri Amalia Khairil, mother to a 13-year-old son with autism, family outings require careful planning and can be stressful when strangers mistake her son’s meltdowns for bad behaviour and judge her as a poor parent.

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Mohamad Darwisyh Mohamad Azmey’s family has a special swimming trolley that is always packed and ready to go. So, when it was rolled out on a Sunday morning, the then 11-year-old knew they were going to the pool.

It is one of Darwisyh’s favourite places, said his mother, 38-year-old Seri Amalia Khairil.

The entire family – Darwisyh, his parents, three younger brothers and godmother – spent several hours at Sengkang Swimming Complex. But when it was time to head home, Darwisyh lay on the floor and started crying. He did not want to leave.

Bystanders watched the tween, whom they probably thought looked too old to throw a tantrum in public.

This happened two years ago, but Seri remembers it vividly. She composed herself and explained her everyday reality to the crowd: “Sorry, he has autism.”

When some continued to look, she added: “If you don’t know what autism is, you can read about it.”

WHEN STARES FOLLOW WHEREVER YOU GO

Darwisyh was diagnosed with autism, a neurodevelopmental condition that affects how a person processes information, communicates, socialises and experiences the world, when he was three.

It was a life-changing diagnosis for the entire family.

“Our routines, priorities, parenting style, whatever plans we had, changed. We revolve around Darwisyh,” said Seri, whose other children are 11, eight and four.

Because Darwisyh is non-verbal, he struggles to express himself. When upset, he hits his face. When he feels sad, he sits on his bed and cries. The family sometimes does not know why.

At 13, he is still being toilet trained and needs to wear a diaper. There is also usually an adult at home to monitor him, guide him with routines, and ensure he does not accidentally hurt himself or become overwhelmed.

No matter where he goes, people stare. Kids sometimes point at him. Over the years, the family gradually got used to this.

“He is wearing headphones (to reduce sensory overload). He may make incomprehensible sounds, pace, and have repetitive movements, emotional outbursts and difficulty regulating himself in crowded environments.

“Of course, people will turn and see. It’s a natural reaction,” Seri reasoned.

What hurts is when Darwisyh and his family are shunned or judged harshly for it.

Seri recalled an unpleasant encounter some years back. The family was waiting for their food at a restaurant when Darwisyh began to make loud frustrated noises, got up and walked around the table repeatedly. They could not get him to stop.

“This family sitting near us stared. From their expression, maybe they thought we could not control our child. We could not hear their words, but they moved away from us with their children.

“I felt judged and very unwelcome,” she said.

This feeling of rejection stayed with Seri. “From then on, we brought Darwisyh out less.”

EVERY OUTING MUST BE CAREFULLY PLANNED

To prevent such unpleasant incidents, simple outings to the mall require complex planning.

Seri takes Darwisyh out twice a month and it is a whole family affair involving her husband, children, her godsister and Seri’s parents. They need the extra support to care for Darwisyh.

Prior to the outing, Seri shows Darwisyh a picture of the place so he knows what to expect.

Because Darwisyh is very selective about food – he only drinks a particular grape beverage or tap water, and only eats fried chicken and specific brands of snacks and instant noodles – when choosing a venue, Seri checks if the place has these items. If not, she will pack food for him.

At restaurants, she requests a corner table so that Darwisyh has space to walk around if he wants to. She always has her eye on the exit so she can take him out if he gets agitated or overwhelmed.

They try to keep outings short – usually 30 to 60 minutes. If the rest of the family is still shopping, an adult will take Darwisyh to wait in the car. If he shows signs of being distressed, the family might cut outings short.

Everyday life can also be a challenge. As a nurse working rotating shifts, Seri is stretched between caring for Darwisyh and her three younger sons.

Night shifts are particularly gruelling. They run from 9pm to 7.30am, and Seri returns home to send her youngest son to childcare at 8.30am without even changing out of her uniform.

She then prepares food for Darwisyh, showers him and preps him for his school bus. Only then is she able to shower, eat and nap from 11.30am till 1pm. She then wakes up to give her two primary school boys lunch and help them with homework before continuing her nap from 3pm to 5pm – clocking a total of three-and-a-half hours of shuteye every day.

Seri alternates these childcare duties with her husband, a security officer on permanent night shift. Her parents and godsister also live with them and they help care for the children. This family support has helped Seri cope with work and parenting duties.

AN INVISIBLE DISABILITY

Seri noted that persons with autism and their caregivers often face additional challenges because autism is “an invisible disability”.

“When Darwisyh was younger and didn’t wear headphones, people always said he looked normal – where were the signs of autism?” she told CNA Women.

Another common misconception is that it is merely a phase. “People would say: Never mind, once he gets older, he will be okay.

“Autism is a lifelong diagnosis. It cannot be ‘cured’. It’s not something that we need to fix. It is something that we need to help them with and just be with them,” she said.

Over the years, Seri has become an advocate for autism, encouraging people to “Google it”, and not just for her son.

Since 2019, she has worked at the Institute of Mental Health as a registered psychiatric nurse, supporting clients with intellectual disabilities and neurodevelopmental conditions including autism and attention-deficit hyperactivity disorder (ADHD).

People would say: Never mind, once he gets older, he will be okay.

Seri said she is heartened that there is greater awareness for autism today, thanks to public initiatives and events.

For instance, on Apr 28, 2026, Mastercard launched its Time for Acceptance initiative, in partnership with St Andrew’s Autism Centre.

Partnering with nine organisations, including Mandai Wildlife Group, Gardens by the Bay and other retail, lifestyle and dining businesses, the initiative introduces autism-friendly measures.

These include designated periods with reduced crowd levels, lower music volume, dimmer lighting or calmer environments to reduce sensory overstimulation, as well as clearer wayfinding and information, and frontline staff training.

Even with public initiatives and more inclusive spaces, Seri said it matters how people respond to those who are different.

If you encounter a person with autism making a loud noise or having a meltdown, “don’t just stare”, she said.

“You don’t have to physically intervene because during meltdowns, they may become unaware of their surroundings and unintentionally flap their hands or react suddenly.

“You can just give us space. Or, you can smile at us and give us a nod. That is a silent acknowledgement that it’s okay for us to be here. That’s all we need,” said Seri.

Beyond that, she hopes people can see the other side of autism, and be kinder, more understanding and more inclusive.

“(My clients at IMH) are very loving and happy-go-lucky individuals. Every day, they will greet you and smile at you. They start their day with positivity,” she said.

“I’m happy to go to work every day to see them and I’m also happy to go home (to Darwisyh),” she added.

“They have taught me a lot about patience, empathy, and appreciating life differently.”

Now that he is older, Seri and Darwisyh also have a deeper mutual understanding, and she can read his non-verbal cues and emotions better.

“We grew together. And now, we understand each other without even talking,” she said.

She also loves how affectionate he is – hugging her, holding her hand or face, and giving her kisses – rare for a 13-year-old teen, she laughed.

“He likes to lie on my shoulder and give me a silent hug. It really means a lot. It’s like unspoken words. He’s telling me: Thank you, I love you,” she added.

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