Parents of children with Autism Spectrum Disorder share their experiences


Zurini’s eldest son, Mohd Alief, is on the autism spectrum – she says being able to share online has helped her cope. — ZURINI HASBULLAH

Zurini’s eldest son, Mohd Alief, is on the autism spectrum – she says being able to share online has helped her cope. — ZURINI HASBULLAH

Zurini Hasbullah, from Kuching, Sarawak, is a regular contributor to the Autisme Malaysia FB page. The 39-year-old who enjoys crafting, baking and tailoring is a stay-at-home mum of three children. Her eldest son, Mohd Alief Iskandar, is on the spectrum.

Zurini said: “Pages like Autisme Malaysia help a lot with information because I have begun to understand better what it means to be on the spectrum. Previously, it never occurred to me that I might be autistic myself but after I did some reading, I began to think that maybe I was just never properly diagnosed as a child, because we were not really aware of it, especially not 20 or 30 years ago.

Zurini says that while growing up she would avoid eye contact with others and was hyper active.

“I immersed myself in sports as it was what I did best. But I had problems making and keeping friends and I ended up mostly being alone. I also had problems sleeping because my brain was always functioning. In my early 20s, I went through severe depression.

“Being able to share online has helped me cope, especially with my son,” said Zurini, who says she usually browses through the Autisme Malaysia FB page or goes to the nearest Community Based Rehabilitation Programme (or Program Pemulihan Dalam Komuniti) to keep abreast of new ideas.

Azman says he still struggles with ignorant people who are not always nice to his son, Afwan Ali. — AZMAN ABDUL AZIZ
Azman says he still struggles with ignorant people who are not always nice to his son, Afwan Ali. — AZMAN ABDUL AZIZ

Azman Abdul Aziz, 54, from Shah Alam, has a 22-year-old son, Afwan Ali, who is on the autism spectrum.

“He was diagnosed with severe autism when he was three years old. Today, he is still non-verbal, unable to read or count,” said Azman, who opted for early retirement at the age of 47 to care for Afwan.

“I began to research the subject and that led us to the autism-friendly cities of Aberdeen and Glasgow in Scotland (an autism-friendly city is one in which autistic people can use public transport, shop for food and clothes, take part in sports and leisure activities, visit cultural and tourist institutions and eat in restaurants freely). This visit helped me with my understanding of autism, and opened up a new frontier in planning my son’s development.

“I still struggle with ignorant people who are not always nice towards my son,” said Azman, adding that in places like Scotland and New Zealand, people are much more informed on the subject of autism and disabilities, and are more caring.

Azman, who has over two decades worth of experience in Human Resource management, is wary about information available online.

“A lot of it may not be genuine or true, so it ends up not useful. Also, much of the information is for the purpose of publicising certain products or services. There’s a lot of information out there which I feel may do more harm than good!”

Azman is a regular contributor to the Autisme Malaysia FB page.

“I feel that on forums such as this one, emotional support is what is needed. The autism spectrum is so huge and no one person is the same as another, therefore I think we should leave methods and techniques to the experts. Buy the books and read rather than try to get the information for free on a public forum.”

Azman says that back in the day, things were much simpler. With books and journals as reference, he was able to understand and creatively find solutions when it came to raising his son.

“We were forced to refer to books back then, and would usually get the best-selling ones from recognised authors. A book gives structured information. When you go online, you tend to take shortcuts and just read information you think is important.”