Part 2 of 3
KUCHING: In the eyes of society, people with Autism Spectrum Disorder (ASD) are often misunderstood for their perceived lack of empathy and social skills, ignoring the broader spectrum.
In some cultures, ASD is still heavily stigmatised, which has led to a lack of diagnosis and support from the public.
Being viewed as a problem, and in some cases, a menace to society, and facing discrimination not only affects them but also their families, especially their parents, who have poured their hearts, sweat, money, and tears into caring for their children.
Duane Reggie shared his experience when he and his wife found out that their child, Daniel, was diagnosed with autism.

Finding out that his son had ASD has turned his family’s life around.
“When I first found out that Daniel has autism, I admit that there was some scepticism at first. My instinct told me to wait and see.
“However, my wife found out that Daniel displayed some tendency to have autism.
“Being a parent with a bit of denial, I decided to wait and see. But after a few years, I realised he needed help,” he said.
They went to see different doctors and experts for varying opinions, and Daniel was officially diagnosed with ASD at the age of six.
Duane said that since then, he and his wife had to seek new knowledge and research on autism and how to raise an autistic child.
“We had to do a lot of research, from autism-related websites to personal sharing by other parents.
imultaneously, my family provided unwavering support while actively conducting their research.
“I believe the first and most important step is to gain a deep understanding of autism. Only with that knowledge will you be truly prepared to face the challenges ahead.”
Another parent, Julia Pichie, said knowing that her son, Julyan, had autism, shook both her and her husband.
“At first, we were shocked. We were trying to figure out what we should do next for him.
“I was stressed for two weeks because I did not know what to do for him,” she said.
She noticed that Julyan showed signs of autism at 13 months old. They consulted doctors but the doctors were unable to provide a diagnosis.
She said that if her son could only be diagnosed at the age of four and older, then it would have been too late to minimise the effect.
They visited a private medical centre, consulted with the doctors, and did a series of tests to assess Julyan’s developmental progress.
This situation took a significant emotional toll on Julia and her husband, both government employees, as they constantly worried about their child’s well-being.
“Shouldn’t we, like any other parents, have the freedom to request assistance caring for our children comfortably?
“For us, it is very different because nobody wants to take care of kids with autism. They know children can be very hyperactive and sensitive.
“We sent Julyan to a kindergarten before, but he was put in a one-on-one session with the teacher, but it was expensive and difficult for us,” she said.
Duane said that in the earlier years, his son’s behaviour was unpredictable and problematic.
“He was having a little bit of speech delay. So, it was very hard for us to recognise what his needs were at first.
“Because of that, Daniel used to throw tantrums whenever he couldn’t get what he wanted. We gained a better understanding of his condition, which gradually revealed his requirements to us.”
“The techniques we acquired resulted from numerous training sessions organised by the Kuching Autistic Association (KAA), various non-governmental organisations (NGOs) and passionate individuals dedicated to advocating for autistic individuals.
“Now, he’s more manageable, and his speaking ability improves slowly. We’ve made some strict modifications to his diet and reorganised his daily routine. These do help a little bit in managing his behaviour.”
“We get him to do more singing. He attends church like any other churchgoer and usually sings along to the worship songs led by our church’s worship team.
“He likes to sing a lot of songs these days. So, that’s where he acquires much of his speech,” said Duane, who attends and heads the Bahasa Malaysia Speaking Congregation at St. Thomas’ Cathedral.
Daniel is also highly skilled in art. One of his paintings was featured in the Autism Art Exhibition earlier this year.
Several of his pieces were purchased by donors and contributors, both from within Sarawak and beyond.
Duane said Daniel displayed his talent in art at the early age of three. Daniel was also exposed to books when he was a toddler.
“We got him to hold a pencil as early as three years old. At the same time, we were worried that he would draw on the wall so we provided him with a lot of paper.”
“Every time he draws something on paper, I know there’s a way for him to showcase his talents.
“By four, he could draw a dolphin and other sea creatures. He drew a lot of inspiration from cartoons and programmes from YouTube because he likes to watch YouTube.”
Duane added that Daniel would sometimes use his art as a means of communicating with him.
He can paint a mental image of his experiences and feelings and translate them into his artwork.
Julia said her son was more inclined towards a skill-based routine rather than academics.
She also hoped that Julyan could improve his practical life skills and academics.
“We do send him to a special education school but we are worried about him not improving academically. We sometimes do not know what he has learned from school.
“Still, he knows how to sweep the floor, how to clear and wash. So, we think he is more skill-oriented,” she said.
Moreover, Julyan’s mother wants the best for him to go to a skills college and university and get a better life and occupation in the future despite having ASD.
Both Duane and Julia and also their spouses have gone through various challenges and hardships for their children to get an education even though they are diagnosed with ASD.
Through thick and thin, it is their responsibility as the breadwinners, providers and protectors of their children.
“To first-time parents, it is up to them to discover their method of dealing with their autistic children because not all of them are the same.
“There is no such thing as one size fits all when it comes to training your children with autism.
“As parents, you need to lower your expectations and set a goal for your children.
“For example, you want your children to manage their hygiene or to go to the toilet on their own.
“Whenever you set goals, it must be specific, measurable, achievable, relevant and time-bound,” Duane advised.
Julia also reminds parents to “never give up and continue to help your children to adapt in real-life situations.
“Our autistic children are special in their ways. Yes, it is challenging for parents, but you should never give up on your children because they are special.”


