The room is quiet, save for the sound of a table fan humming in a corner. A young boy stares at a photograph placed above the mantelpiece. He points at it and waves fervently at his mother to catch her attention. He thrusts his finger vigorously at the photograph, attempting to convey a message she does not seem to understand. He stares intensely into her eyes, and he frowns as he brandishes his index finger aggressively at the picture. Puzzled, she tries to soothe him. He cannot verbally express his plight, so he looks to her, then back to the photograph, then to her again. In frustration, he balls his palms up and bites hard on his fingers, drawing blood; teeth-marks scar his fingers. His mother struggles to stop him from harming himself, as she pulls his bloodied fists from his mouth. Tears streak across his face in silent grief. She does not understand.
Such is the reality of autism. They say, “If you’ve met one person with autism, then you’ve met ONE person with autism.” The truth in that holds as autism varies from one person to the next. In fact, it’s difficult to claim that there are autistic people that share identical symptoms. The symptoms vary, and while they may be similar, they are rarely identical. Autistic people may be verbal or non-verbal. Some are quiet and reserved; others, loud and engaging. One universal trait all autistic people have in common, however, is the attempt to fit into society. Social communication is a challenge for some and a disability for others, but almost always a hurdle all autistic people strain to get over.
It’s early in the morning, and she screams in protest about going to school. Her father coaxes her into going, but she refuses. She complains of pain but finds it impossible to accurately pinpoint the problem – a stomach-ache. “You’re stupid”, “I want to die”, “Meanie”. She finally goes to school, but throws a tantrum in the cafeteria. The food is not to her liking. The cook yells at her, and she yells back. She says it’s a “disgusting meal and the stupid cook should learn how to cook proper food without tomatoes.” She pushes the food away, and as she returns to the next class, her burst of anger fades almost immediately. They think she is crazy. They think her parents did not bring her up well. They do not realize that she cannot read facial expressions. Forget that she cannot understand body language. Never mind that personal space is something she does not comprehend. Because she can speak, she must be held accountable to all she says. They do not understand.
In March 2012, the Centre for Disease Control and Prevention (CDC) released statistics on autism based on a study in America. 1 in 88 children will have the disorder, with varying degrees of severity. These numbers, while alarming, also begs the questions: Are more children affected, or are there more being detected? Does the increase imply a growing problem, or is it a reflection of the progress in diagnosing the affected? Given the statistics, why is Malaysia reluctant to discuss the topic? According to the most recent statistics provided by the Ministry of Health in 2010, 1 out of 600 Malaysian children are autistic. Could we be a step ahead of America in the emergence of autism in children, or are the lack of numbers a manifestation of the Asiatic community’s collaborative effort to disregard a topic many would be uncomfortable with?
At present, autism is an invisible disorder to the Malaysian public; not much is known. Unlike the disabled or underprivileged, it would appear that the Malaysian narrative has little to no interest in those diagnosed with autism. Despite the current situation, there are trained individuals undertaking the task of helping those with autism. Among them is Caleb Nedu Tamilselvam, a 23-year-old qualified ABA (Applied Behaviour Analysis) therapist.
It is a sunny afternoon as I make my way to the office for the Early Autism Project (EAP), and I’m not quite sure what to expect. Being a fresh graduate, I had little idea when it came to professional work. Hence, when eventually offered training and a position as a therapist, I took it more in faith than certainty. I didn’t completely understand the implications of exactly what I was associating myself with. I laughed it off – the idea of being a therapist felt fleetingly appealing. Part of me wanted to start right away; part of me froze in apprehension at the thought of it – a contradictory affliction. I left the office wondering if I had made the right choice.
It has been almost a year since Caleb became a freelance ABA therapist. As they are bound to the organisation, the ABA therapist has two outlets to administer their treatment: the clinic provided by the EAP for ‘Centre-Based ABA’ or to house visits for ‘Home-Based ABA’. Both have their own sets of differences; for example, the patient will be taken out of their comfort zone when taken to the centre for treatment, but an advantage would be a higher chance of socialising for the patient. Despite existing differences, the therapist in charge would have to refer to the ABA guideline in dealing with the patient. Caleb recalls his first time working with a 4-year-old autistic child — this came to be a significant moment in his career as a therapist.
He isn’t listening. He might be, but I’m not quite sure he is. I can’t actually tell. It’s only been an hour since we started. It feels like it’s been much longer. I figured with my training and additional two-weeks of observation with another therapist as he worked would have been helpful. But this boy just refuses to listen. Nothing I do seem to capture his attention. Nothing works. He keeps on stimming — drawing out this long, high-pitched cry; much like a kettle at boiling point. I’m not quite sure what to do. At all. He doesn’t speak either. I only hope that each time I redirect him away from his stim, he’d allow me to speak. But each time he returns to his comfort zone, and we’re back at square one. At the end of the three-hour session, I feel physically and mentally drained. While there’s a sense of accomplishment, I can’t say that I’ve done my best. At that point, I just want to go home to recharge.
Most autistic people go into a stim to cope. Stimming can be considered an autistic symptom, though it is also part of the behavioural pattern of human beings. Stimming ranges from tapping feet, cracking knuckles, biting fingernails and the like, though it also extends to more vigorous actions such as flapping arms, spinning an object, rocking and so forth. We react to stims differently, particularly if they are being exhibited by an autistic individual. After all, we live in a world where it’s more acceptable to bite our own fingernails (even though it is less hygienic) than to be flapping our arms. Therein lies a huge problem for therapists treating autism – sometimes, when the autistic patient goes into his self-regulatory zone of stimming, he gets more engrossed within it when people react to it. He might find it amusing, therefore he continues, or maybe he finds it harder to cope when being jeered at, so he keeps at it — no one knows for sure. With autism being a disorder not many are aware of in Malaysia, empathy for it is minimal and unfortunately we are less accepting of what we cannot comprehend.
Caleb has worked with many patients, and in most instances they show signs of self-stimulatory behaviour. The key is to guide the patient into changing the stim into something more manageable, such as squeezing a stress ball. With the ABA, therapists can then attempt to help individuals eliminate or alter their stim.
As a freelancer, Caleb still spends most of his days assisting autistic children, though he is also a drum teacher. He is also a member of several bands (Caravel) and enjoys performing at gigs. He gets his patients through a network of therapists and consultants, giving him freedom of choice. He believes that his qualities as a performer helps with entertaining autistic children, while his skills as a therapist adds on to his understanding of different individuals, allowing him to conduct drum classes more efficiently. While Caleb is a fully trained ABA therapist, his patients are mostly verbal ones as he believes that is where his strength are. Despite that, one patient that would leave a mark – literally – on him would be a non-verbal eight-year-old.
“I’ll do it,” I said. “Are you absolutely sure?” she asks in disbelief. I didn’t understand. “Yeah, I’ll take it,” I said, reassuring her. I could hear her inhale sharply through the receiver, as if about to say something but she hung up. It was unsettling, having heard that most of the other therapists had rejected the offer. I figured it couldn’t be too difficult, now being more confident as I’ve taken on more jobs.
It was daunting. He’s acting up again. Every day we go over this routine, like a broken record player doomed to repeat itself, or the music punches and kicks. I ask him to join me in a room in his house specially designated for therapy sessions. I can see that he understands, but is defiant. Having given a clear instruction, I had to follow through regardless of the situation. “Come,” I said, perhaps a little too harshly. He wails at me. For the first time in days, I break. I was angry, and much as I wanted to keep my emotions in check I am also only human. And my anger spurred his, I could see that. So I calmed myself down, walked over to him, picked him up under his arms and walked towards the room. It was then he bit down on my shoulder. Hard. I wanted to scream and drop him, but I’ve endured much more with this boy. I’ve been hosed until dripping-wet from head to toe, punched, kicked, and had a door slammed in my face over the course of our sessions. This time was no different. I had to endure, so I kept my mouth shut, feigned a bold face that hid all emotion, and conducted my session with him. I left that day unhappy, and while he was not capable of speech, his expressions screamed for me to disappear.
It’s been two weeks. I’ve been sick. I finally return to his home for another session. I dreaded it a little, considering what happened the last time. However, I see him smiling as I walk in, and I smiled back. We did what we had to do that day pretty smoothly in comparison to previous times, and I actually felt progress. He was listening better now; less stimming, less playing with water or jumping into the pool when I wasn’t looking. I was given the chance to keep my sessions up with the boy, as the head consultant from the United States saw his tremendous leap forward. In spite of this, his mother called me that same day. “He’s not making any progress.” “We would like to withdraw.” I felt a part of me wither inside and die. And there was nothing I could do.
At times, expectations do not align themselves. The parents do not see as the therapists see, and often service is retracted before they can fully flourish. Caleb uses his skills as a performer to engage with the children he works with. From there, he attempts to help them develop motor skills, role-playing to help them understand conversations better, and break times are filled with activities that assist them in expanding their mind. He has seen many children improve, and recalls an enlightening moment to be one as simple as seeing a child learn to use the potty.
Regardless of the benefits of therapy, it would appear that the lack of exposure in Malaysia could simply be because the cost is too high. It could come to several thousand ringgit a month to hire an average of three to four therapists and one consultant. Even though statistics related to autism in children is increasing, help cannot be provided at a similar rate as it is in the United States. The situation takes a dive for the worse especially when considering an individual has a better chance of coping with autism if treatment is provided at an early age. It is not enough to simply raise awareness; more help has to be made available to give these individuals a fighting chance to integrate into society, and not be shunned simply because they are not understood.
“Get out of my house”.
“I don’t want you here”.
Sometimes, you are the centre of this universe. And we’re nothing more than actors in your dream. But I will try, and we will all try to understand you.
Edited for ISSUE Magazine by Mabel Ho.