As recently as last month I learned that the Autism Society of America was founded in 1965 by research psychologist Bernard Rimland, clinical psychologist Ivar Lovaas and Ruth C. Sullivan, along with a few parents of autist children. The first case of autism was Donald Triplett, who, at the age of 3, was placed in an institution. More than half a century later, the United Nations called for one day to be designated World Autism Awareness day. Since 2008, that day has been on 02 April.

Like many though, this day passed by without much significance until three years ago when I discovered that I, along with two of my three children, could perhaps be autists.

My husband Michael and I have three boys: Shiraz, 19; Tareq, 15 and Mirza, 14. With him always traveling for work and us living in Singapore away from our families, when I became pregnant with Shiraz, I earnestly took up the role of main caregiver. There were no red flags; Shiraz (and subsequently Tareq and Mirza) passed all the milestones physically, cognitively and behaviorally, and I even started a life coaching business for parents who were struggling with their children’s behavior, using Shiraz as a model.

While there were indications that he was a bit different from other children, he was a delightful, gregarious, fearless and happy child, full of life, which outweighed any ‘negatives’ he had. And because I had also manifested many of the symptoms, I dismissed them. 

Arms Flapping

Shiraz tended to flap his arms when he was happy, occasionally tip-toed and sat in a “W” position, loved being in the water, and was obsessed about trains and anything electrical. He also loved spinning things, and wherever he saw anything round, like the tudung saji or plates, he would attempt to spin them. Once he saw the cat sleeping peacefully in a tight ball and tried to spin the poor cat too. However, perhaps the first real indication was when he was 2 and we were told by the kindergarten owner that he wasn’t able to sit to task.

When he was 6, we discovered that unlike in kindergarten, he was unable to make friends at the neighborhood primary school. This was a trend that continued up to secondary school level. We then decided to send him to a small and cosy learning center in which he thrived.

At this time, I started to notice more things amiss in Shiraz, myself and Mirza. Or rather, I noticed that other people noticed that we were different.

Mirza was 10 and showed some puzzling signs during physical activities. At dance class he was half a beat slower than his peers and he had difficulty executing many kicks in taekwon-do which were effortless to Tareq. Because Shiraz had exhibited the same issues, I was annoyed, but never concerned. However, one day at bushcraft class, his teacher, Campmaster Veeraksana Veerak sent me a video of him sawing a piece of wood excruciatingly slowly. While he was sitting in the correct position, his posture was rigid and he held the saw so unnaturally close to the blade that he couldn’t control it properly. By comparison, his female classmate easily managed it.

When he was 11 he went on an overnight camping trip in a jungle in Gombak with Michael, Campmaster Vee, and his classmates. The next day, while packing up to leave, a swarm of stingless bees (lebah kelulut) came buzzing around him and he froze, oblivious to Michael calling out to him several times to hurry up, and to everything else. Michael couldn’t understand what was happening and got angry and frustrated. Because Mirza seemed literally stunned, Michael had to come over, look him in the eyes and lightly touch him on the arms before Mirza was able to break the hold that the bees had on him. Even so, because the bees were still disturbing his auditory senses, Michael had to resort to instructing him to do the tasks one at a time, starting with taking down the hammock and waiting for him to finish that task before directing him on the next one.

Mirza at the Bushcraft Overnight Camp during the Bee Incident. – Photocredit: Writer’s own collection.

Back at home, a baffled Michael iterated this experience to me, which brought back a memory I had at a bustling Chow Kit market, when I was very young. The cacophony of sellers yelling out to potential customers, the sloshing sounds of the seafood vendors pouring water over the fishes on display and splashing my dress and the pushing and shoving of bodies became one single roar until my father selected a chicken to be slaughtered. I was mesmerized by the poultry clucking frantically in their cages, and like Mirza, this had me completely overwhelmed and I froze. My dad was calling me repeatedly and when I came back to the present, I was scolded for daydreaming.

I explained to poor Michael what Mirza was likely going through at that point and how the bees buzzing was at that exact frequency which bothered his already heightened senses.

Symptoms Of Autism

It was probably this event and Michael’s severe reaction that brought forth all the ‘idiosyncrasies’ in the three of us and made me realize that this was not normal. I remember facing the same ridicule from peers and did not wish it on my own children. It prompted me to find out what was wrong with us so that I could rectify it. I searched online and took a few tests and realized that we had symptoms of autism.

Instead of feeling totally dismayed though, it was liberating, and I felt relief to know that it was actually a condition. We were not defective; rather, all of our heightened senses were turned on at the same time without any filtering, which was my experience at the market. In Mirza’s case, the bees added to the unfamiliar jungle sounds, textures and smells, causing him to, in Michael’s words, ‘deactivate’.

Unfortunately there is no ‘cure’ and because neurotypical parents just can’t fathom how debilitating the sensations can be, they may not know what helps and what doesn’t. For example, a distressed child may calm down when hugged by a parent, but to an autistic one, whose senses are already assaulted, being touched may be too much sensation to endure.

For a family with autism kids, there is ‘no cure’ for the kids, but love is what holds them together. Photocredit: Pixabay via Pexels

Ironically I am grateful to be an autist just like my children. I have the advantage of understanding what it feels like, and being articulate, am able to help others understand it as well. Thanks to Shiraz, I have learned that the techniques imparted in my life coaching program also work for autistic persons. It is my hope that this article helps. While the spectrum is wide and each person is different, I hope that this article serves to, at the very least, provide a lightbulb moment to parents and individuals in similar situations.

In part 2 tomorrow, we discuss the various symptoms that one may look out for in children with autism.- New Malaysia Herald

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