Recently, I came across a YouTube video showcasing a Singaporean mother taking care of her three kids. Little did I know, that seemingly unassuming video would move me to the verge of tears as the seconds went by. Two of those three kids were diagnosed with X-linked Agammaglobulinemia — a rare genetic disorder that compromises the body’s ability to combat infections; while the other — whilst clear of the disorder — is on the autism spectrum. As many parents would attest, it is a daily struggle to care for a child with a disability — let alone three kids — her helplessness and guilt as a mother are further shown as she detailed her turbulent journey as a largely single parent.
Throughout the course of the video, I started having flashbacks and drew parallels of what I saw during the video to my personal situation. For I, too, have a family member classified in the special needs category. His name is Edward — a handsome, well-groomed young man who turned 24 earlier this year. At the age of three however, he was diagnosed with Asperger’s Syndrome — a neurodevelopmental disability that affects one’s ability to effectively interact and communicate with people. Today, I aim to document a personal story spanning more than two decades that took me many years to tell in the hopes that my personal experience will shed some light to anyone else travelling this journey.
Growing up, my siblings and I all did regular sibling things together; taking turns initiating petty arguments to our frequent visits to the nearest playground, everything seemed normal back then. As I gradually obtained a sense of awareness in my early years however, I began noticing some behavioural irregularities displayed by my older brother. His speech was occasionally slurred, whilst conversations initiated by him always seemed to revolve around himself or repetitive topics at most. At his worst, he would often unleash irregular behavioural outbursts, accompanied with an unwanted symphony of him crying loudly and throwing massive tantrums.
Occasionally when the tension generated by his outbursts reached a crescendo, I recalled my toddler self asking my parents, “What’s wrong with him?” and “Why is he crying so loudly at this age?” More often than not, my parents would simply respond with the same thing, “He’s different, Chris”. As this particular response began circling around my head like an endless loop- compounded with all the attention my brother was getting from my parents instead of me, I was commonly left in a befuddled state early on. I knew he was different, but in what way? Other than the same routine response, my parents would often keep me in the dark about what was going on with Edward. Many a time, I found myself isolated indefinitely in an invisible waiting room, waiting outside with increasing impatience for my parents to unlock the door to the answers I so desperately seek. I was not condemned to hang; I was condemned to be left hanging.
My initial years as a primary school student was anything but peaceful. Sent to a government school from the age of 7, I was following in the footsteps of my sister who is a few years my senior. Naturally, as with most Asian families, parents tend to draw comparisons between their children especially in the all-important realm of academics. I was far from the high achiever I currently am back then; in fact, it was a seemingly commonly-held belief among my parents that I was the “black sheep” in the household due to my inferior academic results in comparison to my sister’s, the latter of which drew lavish praise from my parents. In most cases whenever I were to bring home my mediocre results to be thoroughly inspected by my parents, it usually resulted in me being on the receiving end of a tongue-lashing as if I was cocooned in a pressure cooker with nowhere to run or hide. Being the rebellious kid I was back then, I would often engage in tirades and topics surrounding my older brother would creep in and become the centre of our conversation.
“Why do you always compare my results with my sister and not Edward’s?”
“My results are so much better than Edward’s, yet I’m always the one being compared to my sister.”
“This is so unfair!”
“I hate all of you!”
This eventually became a vicious cycle until my latter days as a primary school student, where every underwhelming result usually spiralled into an endless back-and-forth argument between my parents and I.
With every disappointment, my resentment for my brother’s “privilege” grew and grew.
With every complaint ignored, my tendency to bottle up my feelings became more and more common.
With every second of attention diverted away from me in favor of my older brother, my bitterness festered and my vexations ballooned.
Back then, I always thought my older brother had it easy. He did not have to worry about homework, grades, college, university or work; stuff that gets “normal” people on tenterhooks. He did not have to worry about being imperfect in the eyes of our parents, because he was always almost perfect in their eyes.
What about me?
Why wasn’t I afforded the same privilege or treatment?
Did I even exist in the eyes of my parents?
All these questions and thoughts fuelled an inferiority complex within my juvenile self; my older sister was getting all the laudations, my older brother was getting all the attention, and what was I getting in return? I was getting increasingly insensitive towards my brother’s situation, and sometimes was even ashamed of acknowledging him as related to me in front of my primary school friends. When my parents would tell me countless stories about my older brother being bullied in high school, and instead of showing an ounce of compassion, I would merely shrug and barely bat an eyelid. A cold heart was my coping mechanism back then; I would constantly put on a facade of radiance in public, but deep down, my face was more of a wet weekend on most days and finding a modicum of happiness was a daily struggle.
Things took a turn when I was 13. En route back home after vacationing overseas, my brother threw one of his hissy fits at the airport. It was an unsavoury scene which attracted a considerable amount of unwanted public attention. Back home after the dust had settled down, my parents came into my room and sat beside me, and proceeded to gradually explain the bits and pieces of my brother’s condition, the circumstances and difficulty surrounding his birth among other things.
It was this very conversation that night which provoked a gradual change in how I perceived him. Similarly, it was a harsh reality check; as flashbacks regarding how I treated my older brother swept across my mind with a familiar sense of guilt. Truth to be told, it was a mentally challenging period for me; I was forced to confront all of the unsavoury things I’ve said in the past relating to my brother and I was ashamed of myself. Overall however, it was a much needed conversation that was absolutely necessary for me to develop the innate understanding of my brother. He may not be able to understand us in our world, but I was willing to try and understand him in his. With guidance from my family and the aid of various sources through the Internet, I began to gradually understand my brother’s condition and more importantly — how to help him as a brother.
And yeah, now here we are. Our journey as siblings has come a long way since we were little, both as individuals and as a collective. Edward sometimes still displays some of his earlier tendencies; talking about repetitive stuff centering around his insatiable passion for headphones, occasionally throwing the odd tantrum among other things. With that being said, his personal progress over the previous few years have been nothing short of outstanding. His temperament has improved by leaps and bounds with the assistance of some counselling, resulting in his tantrums only occurring few and far between. Whilst certain aspects of his social behaviour and personality traits remain consistent and are difficult to change due to his condition, over time, I have come to accept his limitations and chose to focus more on his strengths of which- his dexterity in audio engineering and incredible memory instantly comes to mind. To help autistic children thrive, more than an acknowledgement of difference is needed, they need to be acknowledged and celebrated to feel valued.
Likewise, growing up with my brother has taught me a lot about compassion, resilience and empathy. Although my idea of home is different and can sometimes be painful, I would not have changed it for anything else in the world. My brother has been a key factor in shaping the person that I am today and our relationship is closer than it has ever been before. The journey that we embarked on together over the past two decades have been anything but easy, but we’ve both made it this far together and that makes me so, so, proud.
He’s Edward, he’s my brother, and he will always have a special place in my heart.
A message to you, the reader
There is a high probability that you may share similar sentiments in regards to my personal experiences with a sibling with special needs- perhaps through someone in your own personal circle whether it be your sibling, relative or even a friend. Although the global community has made laudable progress in working towards acceptance, rather than merely raising awareness as a population embracing difference, we still have far to go. Your personal experiences and encounters with people possessing special needs should be viewed from a positive light; you will never realise how unique your experiences are until you have another canvas to compare yours to.
Whilst it can be truly difficult at times especially in a world that isn’t necessarily the friendliest towards the special needs community, the importance of initiating conversations revolving around this topic and trying to understand them cannot be understated. People with disabilities bring incredible diversity and value to our communities, and everyone should make an active effort to listen to their stories. They are no less than you, me or any other neurotypical person and we must do our best in making our world a more accessible and inclusive one. Always remember that autism itself is not a choice, acceptance is. They are simply waiting for you to enter their world.
“Do not fear people with autism, embrace them. Do not spite people with autism, unite them. Do not deny people with autism, accept them, for then their abilities will shine.” – Paul Issacs
By: Chris Phang