What it’s like to bring up an autistic child

THE number of parents suffering from severe stress or burnout is increasing as they cope with caring for their autistic children, experts warned.

Data from 2021 showed there were 589 children aged 18 and below who were diagnosed with autism spectrum disorder (ASD), up 5%  from 562 in 2020. 

ASD is a neurological and developmental disorder that affects how people interact with others, communicate, learn, and behave. 

Autistic children behave differently from other children, requiring parents to learn new coping mechanisms. 

The Vibes spoke to parents about their experiences raising autistic children and the sacrifices they had to make.  

Siti Nadirah Hafidzin runs a small catering business after quitting her job as a crime reporter at a local newspaper a few years ago. She said it was not easy to leave a field she was passionate about, but having an autistic child changed everything.

"Having an autistic child is different from any normal family with kids. It was a difficult choice because I had a career until my second child was diagnosed with autism," she said.

"If any family with an autistic child tells you that it is all fine and wonderful, then they are clearly lying. It is stressful, and you need to be very patient all the time, which is almost impossible.

"As normal human beings, we suffer from stress, fatigue, and burnout. We are not happy and smiling all day.

"There are days when you feel exhausted and are not in a good mood, but whether you like it or not, you have to face reality. You have a special needs child who must be given special attention and support.

"At the same time, you have to take care of your other family members. So, if you're already stressed handling your autistic child, it becomes difficult to run your family," said the mother of three, who is in her 30s.

Nadirah said that due to the nature of her job, she could not give extra attention to her autistic daughter. She used to get angry easily, and there were times when things got out of control.

"My daughter has a sleeping problem. She would sleep at two or three in the morning. How can we as parents stay up that late while we have to go to work the next morning? t was difficult for both of us, and finally, I decided to quit and do my own thing from home.

"Even though it is still stressful sometimes, we are able to work it out. We (husband and wife) support each other emotionally and mentally," she said.

Nadirah's daughter, Hasya Nur Dhuha, 7, attends a government school under a special intervention programme.

The abilities and needs of autistic people vary and can evolve over time. While some people with autism can live independently, others have severe disabilities and require lifelong care and support.

Farah Wahida Abdul Aziz chose to focus on her son's development rather than her job as an operations manager. The 33-year-old Farah said she struggled to cope with her eight-year-old son's behaviour, especially during a meltdown.

"My husband and I have to be ready all the time. My son has mild autism, cannot speak, but he is not aggressive," Farah said.

"However, he is sensitive to noise. He gets scared and screams. Sometimes he is impatient and won't stay still.

"So, it is my job to make sure he is alright, doesn't hurt himself, or break things.

"It is the same routine every day. Observing him doing the same thing every day is tiring and stressful.

"He is in his own world while I have other things to worry about. I have to make sure he eats, the house is clean, and so on."

Recalling the stress she underwent during her son's early childhood, Farah said it was a tough process.

"You have to be very patient, although it is easier said than done. However patient you are, you will somehow get angry.

"The stress is still there today. We have to realise and accept this gift. Give him the treatment he needs, and slowly it will get better," she said.

Khairil Anwar Mohd Amin has a 12-year-old son who was diagnosed with autism at the age of two. Khairil, 39, said it was difficult to handle an autistic child, but with early intervention and therapy, his son's condition improved tremendously.

"Parents must accept their child for what they are. Do not live in denial. If they need help, seek help because they deserve it. Unfortunately, some parents are still in denial.

"My son, who could not concentrate and had behaviour issues, can now talk and count in school.

"He knows what to do, and for me, after seeing him improve, I do not find it difficult anymore.

"As long as you help him and get him the treatment needed, it will give you relief in the end. That's what I did, and I still send him to therapy classes," said Khairil.

Sherafina Omar's son, Wan Arezz Azeeq Wan Zaiful Arman, was diagnosed with autism at the age of three. Sherafina, 52, a former accounts manager for a security company, quit her job 17 years ago to care fpr her son.

Her sacrifice paid off. Wan Arezz, now 17, is preparing to sit for the International General Certificate of Secondary Education examination for admission to university. He is also an ardent guitarist.

"In the early days, it was very difficult. My son did not talk until he was four years old. He could not stand the sound of a motorcycle. He would run away and hide.

"If we went to eat outside, he would hide under the table as he feared people.

"But I was blessed to have a very supportive family and friends who encouraged me to find ways to help my son. That's when I started looking for a special school for him.

"The school programme really helped him a lot. It is a private school in Subang Jaya. We decided to send him there not because we have the money, but because we wanted him to be able to live a normal life.

"After 17 years of hardships, my son produces his own music and sits for exams. As parents, we can never give up. Of course, it was difficult, but we have to work for it," said the mother of three. – June 22, 2024.