The heavy burden of 'Wondering Why' was finally lifted when I was diagnosed with Asperger's Syndrome at 18.
Now in his 20s, Wesley explains how a diagnosis of Asperger’s Syndrome brought about great relief. Wesley’s full name has been withheld to protect the identity of his family.
My name is Wesley. I am currently in my 20s. I was diagnosed with Asperger’s Syndrome (AS) when I was 18 years old. (Ed’s note: From 2013, Asperger’s Syndrome has been absorbed into the umbrella diagnosis of Autism Spectrum Disorder, also known as ASD.)
In her book Appreciating Asperger’s Syndrome, author Brenda Boyd used the term ‘The Wilderness Years’ to refer to the years before her diagnosis. Like Brenda Boyd, I also received a late diagnosis of Asperger’s Syndrome.
During my time in ‘The Wilderness Years’, I struggled hard to survive the jungle that is society and to keep afloat in its deep waters. I often wondered why I was the way I was.
Why was I socially awkward? Why was I so clumsy? Why was it so difficult for me to make friends? Why was I constantly bullied by others? Above all, why could I not correct any of these things no matter how hard I tried?
MY YOUNGER DAYS
As a child, I ate meals at fixed times daily and refused to eat at any other times even when situations changed, such as during family gatherings or when overseas on family vacations. For breakfast, I would eat bread with cheese on one day, bread with butter the next day, bread with peanut butter the day after, and the cycle repeats.
Whenever I ate out with my parents, I ordered char siew rice and nothing else. My dad used to joke that it would be very easy for enemies to get hold of me as I always ate the same food at the same time every day.
When we ordered fast food, I would eat only McDonald’s Filet-O-Fish. It was much later that I came to like Burger King. But even then, I would eat only the Turkey Bacon Beef Burger. At places that served Western food, I would order only Fish & Chips.
Over the years, my food options have expanded. I remember that it was in Primary 5 that my mom finally managed to persuade me to eat beef from Yoshinoya, a Japanese fast food restaurant. Boy, it was delicious!
From then on, whenever we dined at Japanese restaurants, I would eat only beef. That was a start, and now as an adult, I enjoy a wider variety of food, mostly Japanese, Chinese, and Western. For Japanese food, beef, unagi, and sushi are some of my favourite dishes. I also like chawanmushi (Japanese egg custard) and baked salmon.
MEMORIES OF PRIMARY SCHOOL
Throughout Primary School, there were many people who took advantage of my inability to understand unspoken social rules. I had difficulty following our teachers’ verbal instructions and so I was very afraid of missing their instructions. It made me very anxious and every day I would ask my classmates a lot of questions about homework and what had to be done.
Once they knew that I needed them to answer my questions, they used this against me. They would withhold their answers unless I lent them my stationery or gave in to their demands. They had their own stationery and foolscap paper but they insisted on using mine.
I failed to realise that they were taking advantage of my naivety. I foolishly gave in each time so that they would answer my questions about the teachers’ instructions.
In Primary 4, there was a male classmate who would physically hit me. One time I hit back and ended up getting punished by the teacher. In Primary 5, there was another boy who would hit and disturb me. Some of my classmates regularly ganged up on me and the teachers hardly stepped in to help. When they did, I often got punished together with the bullies. My parents had to intervene by liaising with the school teachers and the principal. This went on all the way to Primary 6.
I was targeted not just in class but also on the school bus. There was a guy who would hit me and splash water on me. My dad actually taught me strategies to handle the bullies but due to my failure to apply them properly, I continued to suffer under the hands of my tormentors. I also tried learning Taekwondo for self-defence, but that did not help much as I didn’t know how to apply it properly.
Academically, I did not do well. It was difficult to study when I constantly felt threatened in school. I had a teacher in Primary 5 who punished students for forgetting their homework. The punishments included doing push-ups, standing up in class, and having one’s name recorded in her ‘black book’. These punishments made me very fearful and I would rush to finish my homework without actually learning anything. Unfortunately, I did not know of any study techniques that could have helped me then.
At that time, I found the term ‘black book’ very confusing because the colour of the book was clearly red. I now realise that it was my autistic brain that took the word ‘black’ literally and was oblivious to its figurative meaning.
BECOMING A TEENAGER
When I went to Secondary School, things became slightly better. It was not because the bullying stopped, but because I was not the only one getting bullied. Someone else in my Secondary 1 class was also bullied, so I was not the main target. In Secondary 2, however, the main victim of bullying was transferred out of my class, making me the only target for the bullies to pick on.
I was teased and called ‘gay’ due to my behaviours and mannerisms. According to the English dictionary, the word ‘gay’ describes a homosexual person. I am not homosexual but the teasing got to me so much that I started forcing myself to look at girls just to convince myself that I am not gay. I sought the advice of two guys who were older than me and one of them explained to me that ‘gay’ behaviours included being touchy of other guys and ‘girly’ mannerisms.
At that time, I didn’t realise that the word ‘gay’ was used loosely to tease a male person about his feminine behaviour. So whenever I related this part of my history to others, I always had to explain that I was not gay, that I was not sexually attracted to guys. It was only some years after that someone told me that the appropriate word to describe my mannerisms ought to be ‘feminine’. Now, instead of emphasising that I’m not gay, my explanation can be summed up in one word – feminine.
In Secondary 3, I became good friends with three guys who were the same age as me. Unfortunately, the friendship was eventually lost as I didn’t have good social skills and could not behave in a way that my then-friends found acceptable.
This was made worse when I became possessive over one of them and wanted to stick with him all the time. I even tried to take care of him like a younger brother because he was shorter than average, making him look younger than me.
My diagnosis of Asperger’s Syndrome and greater self-awareness enabled me to look back on my past with better understanding. In hindsight, I now have an explanation for why I behaved that way.
I had craved for friendship so much that when I finally had a friend, I made sure I held on to him as closely as possible. I didn’t like him playing soccer or hanging around his soccer friends because it made me feel lonely. Moreover, it was a sport that I did not like. I also didn’t like it when he was playing mobile games or reading the newspapers while I was trying to talk to him.
Today, all these seem rather senseless.
I wanted to boost my self-esteem so much that I wanted to be in a position superior to him. I acted like an older brother and treated him as if he were younger than me, thus making me feel like a useful person. I didn’t like it when he became the President of Library Club. Besides having less time to spend with him, I also felt inferior to him as I held no such position in my Co-Curricular Activity (CCA). Looking back, his position as President in his CCA should not have affected our friendship, but my insecurities and low self-esteem hindered me from handling the situation properly.
As I recount these experiences, literally ten years after they have occurred, I’m beginning to have a heightened awareness of my underlying motivations and reasons for my behaviour then.
Besides facing problems in class, I was also miserable in my CCA. In Secondary 1, I had taken my mom’s advice and joined the Scouts. Unfortunately, the regimen was far too stressful for me.
Why did we have to fall in on time, account for every absence, go for camps, polish our shoes, and wear our uniforms in a fixed way?
Why did they like to change the schedule or call for meetings at the last minute? Why did we have to address our seniors formally?
Why were the Secondary School alumni, who had returned to help out, so strict with us? Why did they punish us and force us to call them ‘Sir’? Being in the Scouts was like being in prison!
After expressing my misery countless times, and wrestling with my mom to let me quit the Scouts, she finally gave in and wrote a letter to the school. That letter was like a ‘Get Out of Jail’ ticket. I then joined the Air Weapons Club, where we shot air rifles and pistols.
My academics suffered because of the depressive feelings from Scouts, being bullied, being lonely, losing my friendship with the three guys, and being at a loss as to what to do. I tried to change my behaviours to become more likable to my classmates and teachers, but I never succeeded. The problem was compounded by poor time management and a huge amount of homework to complete every week. It was all very disheartening.
In Appreciating Asperger’s Syndrome, the author Brenda Boyd wrote about crazy decisions that she made during ‘The Wilderness Years’ – decisions she would not have made if she had known she had Asperger’s Syndrome.
When I read that, I felt the same way. With the benefit of hindsight and better understanding of Asperger’s Syndrome, I came to see that I have also made my fair share of ‘crazy decisions’.
One was my decision to join the Scouts. If I had the knowledge and awareness of AS, that I would not be able to take the regimen, mental stress, and confusing instructions, I would not have decided to join this CCA in the first place.
Another was my decision to try to fit in. I craved friendships because I didn’t have any and I didn’t know what was wrong with me. I tried really hard to find groups to fit in, and forced myself to fit in even when it was obvious that I did not.
When my three friends were no longer my friends, and had even become my foes, I tried to appear popular in front of them. I pretended to have more friends than them by being around people who were not even my friends.
If I had the knowledge and awareness that I am different and have difficulty with social skills, I would not have tortured myself by trying so hard to conform and to be ‘normal’.
When I moved on to Junior College (JC), things didn’t get better. I was still an outcast in my class. I was already 17 years old then. After years of struggling socially, coupled with greater societal expectations as one gets older, life took a heavier emotional and mental toll on me.
I wondered why I was the way I was – bullied, socially awkward, friendless, clumsy, etc. I had no answers at that point in time.
These were the issues that worsened my depressive state.
1. I was trying so hard to be ‘normal’ and to lead a ‘normal’ life, but I kept failing.
2. I was getting teased by someone who came from the same Secondary School as me. Going to a JC supposedly meant having a fresh start in a new environment, but I didn’t get to enjoy that because this person spread rumours about me among my new classmates.
3. When I told people that I was unhappy in school, they were shocked and wondered why. They also told my family that I was complaining. Did they do this because they were annoyed with me? Or were they concerned? Why didn’t anyone realise that my situation is tantamount to a mental health crisis? Scolding me for being a complainer merely adds fuel to the fire!
4. I was experiencing academic stress, especially in Project Work, a compulsory subject for all A-Level students. General Paper (GP) was the most difficult subject for me, as I had no interest in keeping up with news and current affairs. I did okay in Physics in Secondary School but my results in this subject deteriorated in JC. I think this could have been due to the huge increase in content, its difficulty level, and the higher levels of thinking required.
5. I was very worried about doing National Service (NS). With my poor physical fitness and social problems, what was going to happen to me in NS? Who was going to save me?
THE SEARCH FOR ANSWERS
At some point during my JC life, it finally occurred to me to wonder if I had an underlying medical condition. I asked my school counsellor about it and that was the first time I heard the term “Asperger’s Syndrome”. She didn’t know much about it and was not able to tell me more so I went to Google it.
All the traits associated with Asperger’s Syndrome described me!
One article I read was from wrongplanet.net, which related an incident when someone dropped a plate and everyone started staring. Clumsiness – I could relate to that.
I was finally diagnosed with Asperger’s Syndrome in my second year at Junior College, the same year I took my A-Level Examinations. The diagnosis explained why I had social problems, experienced bullying, and had motor clumsiness.
I finally had an answer.
In addition, with much studying, practices, and consultations with the teachers, I conquered the GCE A-Level Examinations (against all odds!) I scored A’s and B’s, enough to get me into a local university and the degree course of my choice.
I am now able to look back on my past with better understanding. Looking back on the past is like a double-edged sword… it helps me to understand myself better but also brings back painful memories. Nevertheless, I feel a sense of relief that the heavy burden of ‘Wondering Why’ has finally been lifted.
When I read the book Pretending to be Normal, a biography by Liane Holliday Willey, I could identify so much with her description of how she felt after getting her diagnosis. This is what she wrote:
“The storm lifted and the answers that explained who my daughter and I were swirled around us like precious gemstones safely washed in with the tide. At last I had reasons and explanations so rich and real I could almost touch them.”
“For the first time I had the confidence to discuss openly how difficult it was to figure out what other people were communicating… All the insecurities and frustrations I had carried for so many years were beginning to slip away. I had not imagined a thing. I was different.”
“I had finally reached the end of my race to be normal. And that was exactly what I needed. A finish – an end to the pretending that had kept me running in circles for most of my life.”
When I read this part of her book, I felt so in tune and connected with these feelings, I felt like I was in the story, or like this was describing my own story.
I was diagnosed late. Many of the difficulties I described earlier are heartaches I would not have had to suffer if I was diagnosed earlier, had early intervention, or had gone to a special school. Sometimes I wonder how I survived all that misery and torture.
These experiences have left scars in my heart and some of the wounds are still not healed.
Recently, I bumped into a former Secondary School classmate on the way home. Because he was not one of those who had picked on me in school, I responded positively by saying hi and calling his name. Not surprisingly, he remembered my name too.
After we briefly caught up on life, I commented that it has been 10 years since our time in Secondary 4. I immediately added, "Don't haunt me with those memories."
He then said in a matter-of-fact way, “They were not nice to you."
We added each other on Instagram and Facebook to keep in touch, and parted ways.
Although this person did not specifically pick on me, bumping into a Secondary School classmate inevitably brought up some bad memories for me.
BECOMING AN ADVOCATE
Because of what I went through, I understand and empathise with others who went through similar pains. My heart really goes out to the younger ones and I cannot help but want to reach out to them and their parents.
Many autistic children in mainstream schools are probably going through similar experiences and this is why I chose to share my story. Vulnerability, when done appropriately in the right setting with the right people, can benefit others. It helps others going through similar pains to know that they are not alone and that someone understands.
Being vulnerable can, in some instances, encourage others to open up too. It is possible for us to appreciate each other for our authenticity and honesty, as we identify as fellow travellers on this journey, with a genuine heart to help ourselves and others.
I am not a superhero. I am a fellow autistic person battling the odds and dealing with ASD challenges day in and day out in my work, personal life, social life, and with my family.
The pain I have experienced enables me to reach out to others. As we continue to open up and be forthcoming with our life stories, I hope that we can become more connected in the ASD community and journey together. I also hope that, as author Liane Holliday Willey puts it, we can continue to “explore the depths of the Autism Spectrum Disorder and the many lives touched by it” and find much “goodness and richness in our common bond”.
I want to leave you with this quote from Coretta Scott King:
“The greatness of a community is most accurately measured by the compassionate actions of its members, a heart of grace, and a soul generated by love.”
All photographs belong to Wesley and may not be reproduced, copied, or manipulated without the written permission of the owner.