The hidden struggles of living on the spectrum

 

Ong Kay Ai (right) and her younger brother Reuben, who hopes to become a special needs teacher.

PETALING JAYA: Bullying and name-calling at school for being different drove Ong Kay Ai into solitude in her teenage years.

“I just couldn’t understand why people treated me that way and I didn’t know how to behave in response. I was really confused and lonely,” she told FMT in an interview to mark World Autism Awareness Day.

Ong suffered from a twitch; she would get upset by loud noises, and was sensitive to touch.

The name-calling triggered a loss of speech for a few years and she often sought solitary comfort in a tiny nook at the school library.

“I would read, a lot. It didn’t matter what I read, as long as I could read for fun. Fantasy books for the times I was lonely, and textbooks and science for when I was feeling overwhelmed,” she said.

She was eventually diagnosed to have Asperger’s syndrome, a form of autism, three years ago. Now, more than a decade later, she can look back on those difficult years with relative indifference.

Ong said living with a “hidden” condition like autism spectrum disorder (ASD) can be a very isolating experience.

Autism is a group of developmental disabilities that can cause social, communication, and behavioral challenges. As it is a spectrum, people with autism may have varying abilities and require different levels of support.

Last week, health minister Khairy Jamaluddin told the Dewan Rakyat that the number of children diagnosed with ASD in 2010 was 99 but shot up to 589 in 2021. Despite the numbers, adults on the spectrum remain under-represented.

Hoping to change that is model, actor, and diploma student Thasraveen Chandra Segaran, or Aveen, who has attention deficit hyperactivity disorder (ADHD) as well as Asperger’s.

Thasraveen Chandra Segaran, or Aveen, is a model, actor and diploma student. Here he’s in local designer wear by Maswira Majid.

“The media often shows children with autism, but very rarely adults who are on the spectrum,” said Aveen, 21, who has appeared in several commercials and many teledramas including Biar Mereka Cemburu, Miss Shopaholic, and Shah Alam 40000.

While he appears confident on screen, Aveen still struggles to fit in with his peers at university, especially when group work was involved.

“Sometimes I ask questions repeatedly to understand better and that tends to annoy some people. I cannot help it.”

Nadia, 20, who is studying cinematic arts, also knows what it’s like to have unseen hurdles when faced with simple tasks. She was diagnosed with autism in her teens but falls within the “high functioning” category.

“When you appear ‘normal’, it’s harder to explain to others why it’s hard to do tasks that they can do easily. People tend to write off my autism,” she said.

Nadia said she found it “exhausting” having to explain to lecturers about her condition and why she found some assignments harder to complete.

She said the lack of autism awareness in Malaysian society makes her feel anxious in her day-to-day encounters with others. - FMT