My son Arif, who’s now three, has always been a fighter. A premature baby, born weighing 1.36 kg with an Intraventricular Hemorrhage, he grew into an active and healthy toddler. But when he was about two, I started noticing ‘red flags’. He wasn’t able to speak, call mummy and daddy, or answer to his name.
Family outings started becoming a nightmare as he would have epic meltdowns in public for no apparent reason, covering his ears, thrashing about and crying his lungs out. He wouldn’t hold our hands, sit in strollers or let us carry him. He would run away recklessly into crowds and towards stairs, escalators and oncoming traffic. We often had to drag him kicking and screaming out of malls and restaurants and make a mad dash to the car. To those looking at us, it must have looked like we were kidnapping him!
My eldest son Amir had never behaved this way when he was a toddler, so though Arif behaved very differently, my husband and I initially brushed it aside, thinking that it was Arif just being a more challenging child. But there was a nagging feeling that would not go away and I started to suspect that Arif might be autistic. We then took Arif to a private clinic for evaluation as the waiting lists at the government hospitals were very long, and booked an appointment to see a developmental paediatrician as soon as I could.
On the day of the highly-anticipated evaluation, the doctor asked questions about our family and spent some time with Arif, while I filled in an M-CHAT-R questionnaire. It took just an hour for her to confirm my suspicions and diagnose Arif with Autism Spectrum Disorder. She recommended that he start occupational therapy and gave us an application form for an OKU (Person with Disability) card.
That visit made it official… Arif is autistic. Were we surprised? No, but that didn’t make hearing it officially any easier. I remember sitting in the car, holding Arif’s diagnosis in my hands and crying. The next few days were very emotionally draining and I couldn’t think straight. It wasn’t that I couldn’t accept my son’s autism but it was tiring as I was experiencing a mixture of relief, fear and sadness very strongly. I was relieved that we finally knew what was wrong, fearful that I wasn’t strong enough to help him through this, and sad that he would have to face countless obstacles in life, even to do and learn the simplest things.
I then went into overdrive, determined to learn as much as I could about autism and how to best help him, but it soon became very overwhelming as there was so much information about autism. To me, it suddenly felt like I was flying a plane for the first time in the dark without a manual, and surrounding me were passengers who were only telling me what I was doing wrong.
It didn’t help that autism therapy at private facilities is costly. I took on as many projects to earn money for the treatments. While I was doing all this, Arif started developing even more challenging behaviours and as he was unable to understand instructions and was unaware of the danger he would put himself in, he needed constant supervision.
Studies have shown that mums who have children with autism have the same stress levels as combat soldiers and constantly struggle with frequent fatigue and work interruptions, and I soon reached that point. Things started taking a toll on me and I was totally burnt out and exhausted. I knew I needed to make some changes.
The first step was to adopt a more relaxed mindset and embrace a simpler way of life. I became selective of the information that I digest about autism and learnt to minimise the guilt and blame I inflicted upon myself. I also reduced my work commitments so that I could dedicate more time and energy to Arif, and have some time for myself. Though I still took Arif to occupational and speech therapy sessions several times a week, I also learnt how to do therapy at home with him. I also began embracing minimalism and sold off many of my personal belongings to raise funds for Arif’s therapy sessions.
When autism became a part of our family life, we had to figure things out as we went along. Each autistic person is unique and there’s no magic pill to take that will make things easier. What works for one family, may not work for another, and while I’m learning to set the bar high for Arif, I also have had to manage my expectations.
Right now I’m working with him to help him overcome his language problems in the hopes that one day I’ll get to hear him call me mummy. But I am bringing myself to come to terms with the fact that it might never happen. The love we have with one another transcends words and that is what’s most important, what keeps us going. Dealing with autism has given me a new perspective on life, and Arif has become my greatest teacher.
Adline is a freelance editor and writer based in Kuala Lumpur, and her world completely changed when she found out that her younger son had autism. Find out more about Adline here.