Understanding autism: Causes, challenges, and building a supportive society

KUALA LUMPUR - Mohamad Fakhrullah Shahran has an autistic sister, Siti Nur Hidayah Shahran, who he often brings to the café he owns and operates in Bayan Lepas, Penang.

The 21-year-old girl would at times throw tantrums and bang her fist on the table loudly or scream and laugh suddenly.

"Whenever this happens, my staff and I would apologise to our customers and tell them she has autism,” said Mohamad Fakhrullah, 31, adding his sibling is unable to take care of herself as she has "floppy” muscular tone, a condition involving reduced muscle strength which can make movements less controlled and more difficult.

"The purpose of bringing my sister to the cafe is to expose her to the outside world. For our regular customers, there is no problem as they are used to her. However, for our new customers, we need to explain the situation to them, otherwise they may get the wrong idea.”

Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterised by challenges with social skills, repetitive behaviours, speech and nonverbal communication.

The National Autism Society of Malaysia (NASOM), on its official website, says autism "affects the normal development of the brain in the areas of social interaction and communication skills. Children and adults with autism have difficulties in verbal and non-verbal communication, social interactions and leisure or play activities.

"This disorder makes it hard for them to relate to the outside world. It is hard for them to communicate with others. They may exhibit repeated body movement, such as hand flapping or rocking, unusual responses to people or attachments to objects and resistance to changes in routines.”

Societal stigma and misconceptions about autism have led to people with autism being unfairly judged or underestimated, resulting in discrimination and exclusion, both socially and professionally.

Raising awareness of autism and promoting the acceptance of autistic people are crucial in addressing their challenges and creating a more inclusive society for them.

HURTFUL

Mohamad Fakhrullah told Bernama he was disappointed with some of the comments made by netizens when he shared his sister’s story on social media platforms like Facebook and TikTok.

"Some people can be so harsh and hurtful,” he said, adding, "They make comments like, ‘If you know your sibling is like that, then why bring her to your cafe? Not everyone can accept her condition.'

"Honestly, it hurts to read such comments. I have my reasons for bringing Siti Nur Hidayah to the café... I want her to get to know the outside world so that she can one day manage on her own. It's important for her to learn a bit about interacting with society.”

He urged society not to be quick to judge but instead offer support so that people with special needs are not discriminated against.

Meanwhile, in certain cases of autistic persons, the various challenges they contend with from childhood to adulthood make them more resilient and determined, ultimately contributing to their growth.

One such person is Khairul Hazim Zainudin, who lives in Cyberjaya, Selangor, and was diagnosed with Asperger’s syndrome when he was six years old. (Persons with Asperger’s syndrome, a form of ASD, have repetitive behaviour patterns and a narrow range of interests. They also have a hard time relating to others socially.)

Now aged 30, Khairul Hazim is pursuing a bachelor’s degree in English Studies at Open University Malaysia. Earlier, after completing his Sijil Pelajaran Malaysia examination, he pursued a three-year diploma course in Creative New Media at Multimedia University (MMU) in Cyberjaya.

Speaking haltingly, Khairul Hazim told Bernama he liked his stint in MMU and that the university counsellor helped him to interact with his fellow students.

However, now that he is pursuing his undergraduate studies, he is finding it challenging to deal with group assignments.

"Some of my friends here accept me but others avoid doing group assignments with me. Sometimes, I have to complete the assignments on my own,” he said.

He also admitted he faces severe anxiety issues due to his limited ability to communicate with others.

During his early schooling years, Khairul Hazim found himself being transferred from one school to another due to the lack of facilities for autistic pupils.

His parents then enrolled him at a centre in Titiwangsa here where NASOM conducts an early intervention programme for children with autism.

"I was there from 2007 to 2017. While there, I learned concentration skills. I also learned to interact with others,” he said.

He also said his parents faced a lot of difficulties, including financial problems, while raising him and his late brother Hafiz Izzuddin who also had autism. Hafiz Izzuddin passed away in November 2022 due to COVID-19.

RISK FACTORS

Meanwhile, Dr Siti Sarah Aishah Suhaidi, a paediatrician at Hospital Islam Az-Zahrah, said boys are three times more likely to be diagnosed with autism than girls, adding girls are usually diagnosed later than boys.

She said the exact cause of autism has not been identified but its risk factors include babies born with insufficient oxygen, premature birth and family genetic history.

"The age of the parents also contributes to the risk of having a child with autism. Women aged 35 and above, and men aged 40 and above, are at a higher risk of having a child with autism.

"For women aged 35 and above, the likelihood of having a child with autism is 1.3 times higher compared to women under 30. For men aged 40 and above, the risk is 1.4 times higher. For men aged 50 and above, the risk increases to 2.2 times, and for men above 55, the potential for having a child with autism is four times higher,” she explained.

On the importance of raising awareness of autism among the public, Dr Siti Sarah Aishah said society needs to be aware that children or adults with autism find it more challenging to navigate life.

"When explaining something to them, we need to tell them step by step, not in lengthy explanations because it is very difficult for autistic persons to understand,” said the paediatrician, who has two children with autism aged 10 and 13.

She said since individuals with autism tend to live in their own world, society must try to integrate the world of autism with the normal world.

"Many people don’t understand autistic persons because of a lack of knowledge. They (autistic persons) possess traits that are different from that of normal people,” she added.

Dr Siti Sarah Aishah also urged employers to provide a conducive working atmosphere to their autistic employees.

"Autistic adults are highly sensitive to sensory stimuli. For example, they don’t like places with many lights, so we need to use appropriate types of lighting that are dim and so forth.

"They don’t like loud noises so they should be allowed to use headphones in the class or workplace to reduce hyperstimulation,” she said, adding most autistic people prefer to learn visually.

As part of efforts to provide continuous intervention for children with autism, Dr Siti Sarah Aishah recommended that Genius Kurnia centres be established nationwide.

Genius Kurnia is a government-run centre that provides early intervention and quality education for children with autism aged two to six to help them become independent, ready for mainstream schooling and eventually contribute to society.

"These centres need to be set up nationwide, including in Sabah and Sarawak,” she said. - BERNAMA