by Aqilah Teo
‘But we need also remember that there is more to life than work,’ said the Doctor. ‘This does not just apply to regular people. Those with ASD need more than just job support; they need life support. Life-wide assistance for both those working outside and those staying at home.’
It would give regular people more chances at employment too, I thought with a mental shrug. Would it not?
‘We barely have anything of either,’ I remarked.
‘That is precisely it,’ said the Doctor. ‘There needs to be long-term stay options. Family accepting the individual at home, yes, but that should not be the only option available as a rule.’
The Doctor lamented the misplaced emphasis on what is important for the children.
‘Parents tend to overemphasise the full-inclusion concept in schools. Sometimes, they forget about the most important thing – full inclusion in society,’ he said. ‘The child could outperform his peers academically. But if he faces overwhelming obstacles in working life, it counters the point of education.’
‘Focusing on social inclusion is much more important,’ he continued, then he fell silent, before adding, ‘As the child grows older, his or her needs change. These should be addressed.’
‘Is it our culture?’ I asked. ‘Over here we are academic hunters, after all.’
‘Not just here,’ said the Doctor. ‘Perhaps it is Asian culture. Students in places like Japan and Korea, too, for example, face extreme pressure to do well in school.’
I agreed with him when he pronounced it a big and raging debate. Some countries are beginning to review the full-inclusion approach. In the end, for those with ASD, what is important is their quality of life when they reach adulthood.
‘Here, we are still on the middle ground,’said he.
‘We need to start changing a little faster,’ said I.
‘There have been changes,’ said the Doctor, looking thoughtful. ‘But yes, we are not yet where we should be.’
The 14th Step
‘What about World Autism Awareness Day?’ I asked. ‘It is one of the only three medical conditions that the United Nations has designated its own “day” after all. I hear we began to celebrate it only last year.’
‘Yes, there have been small tweaks and changes, which hopefully will grow,’ said the Doctor. ‘The National University of Singapore DUKE medical students who started the movement are hoping it will gain momentum. Maybe we will all be able to make this bigger and better.’
I hoped so too.
The good Doctor was kind enough to give me copies of his research to read through. He had probably noticed me eyeing his bookshelves. Perhaps that will be a tale for another time. As it was, I thanked him for his time.
He added, just as I was concluding the interview, ‘Advocacy can be a strong thing. Look at what happened in North Carolina, where people came together to voice out about autism needs. They have autism support legislation now.’
‘We have people like myself, and I do the work that I do. And then there are those like yourself, who do yours. Together, we just might get the changes we are looking for.’
The 15th Step: The Voice of the King
I am going to tell you a story about the King. I call him that because that is his place on the chessboard. I had met and spoken with this King and he has told me his tale. Now, dear Reader, I shall in turn tell it to you.
The King has autism, only he is very good at hiding it.
From childhood, he had always been different in how he interacted with his surroundings as compared to other people. However The King did not find out that he had autism till he was seventeen years old, in 2000, after reading about it online. At eighteen, he was officially diagnosed by the Singapore Autism Resource Centre.
The King managed to enrol in a regular school and later earned a Diploma in Logistics Engineering and Management. He went on to work full-time at an office. He wishes to further his studies and learn about psychology or counselling. Most folks believe that he is what we want our special children to be like when they grow up. We forget that hiding autism does not make it go away.
Office politics baffled him, perhaps to the point that the people trying to manipulate him got baffled themselves. He had difficulty remembering things too, he said, and large work projects with big numbers of people were equally big problems.
His mother wishes for him to stay on the regular route, and would not hear of him doing anything other than a full-time job.
A while back, the King felt like he needed to escape. He frequently went overseas to share his autism experiences and had many adventures.
Once, a rich woman in Macau came up and offered to sponsor the King an education which involved advocating and learning more about autism. The King was happy, until all her promises fell through. Disappointed, he withdrew once again into his old life that did not understand autism.
Now, occasionally, when he returns to Macau, the King says he still enlists her aid to host autism talks there.
I asked him where he would head for if he could go anywhere. Australia, he said. He had heard about and seen wonderful things for people with autism in Australia. He also said maybe he would like to try living in the Philippines, as it is relatively inexpensive to do so.
The King eventually went back to his old life. It made him unhappy.
The 16th Step
‘What does make you happy?’ I asked. ‘What was your happiest memory as a child?’
‘I was happiest when I made new discoveries. I liked to find out how things worked. As a child I once retrofitted a laser with normal batteries, and attached it to a scope to see where the laser was pointing. My mother had a stall at a canteen at the time. Birds would land and strut about the stall and were a nuisance. I used my invention to keep them away, by aiming the light at them.’
‘I do Research for myself now,’ said he. ‘I research treatments – supplements like vitamins and such, and learning how to balance the iron and zinc levels in my body, so that I can function better in the World. I always calculate the safest approach to my Research. I would modify the theories that I read, and convert them to practical understanding to meet my own needs. It helps me function at home and when I go to work,’ said he.
‘There are biomedical treatments for fatigue in autistic people, for example. Some people say it does not work, and some parents swear by these treatments. It works for me. But everyone is different.’
The King then told me how he had travelled a long and arduous way, painstakingly learning to change himself for the World around him. Growing up, it had been about three, four times more difficult for him to reach expected milestones and normal developmental levels.
For instance, it took him much longer than other children to understand the concept of “self”, and developing self-awareness.
‘I had to learn to be aware of my existence, to be aware of things that happened to me, or because of me,’ said he. ‘Like being ill – I had to learn to recognise the signs and symptoms which meant I was ill. And that being ill might make me more bad-tempered.’
The 17th Step
In the King’s younger days, he would not look people in the eye. He would instead, when speaking to someone, focus on a particular feature on his face. His speech consisted of technobabble.
The King said he possessed no decision-making abilities. He did not understand the idea of choice.
‘I could not be flexible,’ said he. ‘When my mind had set itself to see that things work a certain way, I could not see that there were other ways they could work. I have learned to be more flexible now.’
Take, for instance, his ideas about money.
‘I used to think that money had only to be kept away,’ he said. ‘So I would keep every single cent I received. My brain did not think about why. It just knew that I had to. And I never spent it on anything.’
As the King learned more about the World, he learned that sometimes, certain ways of doing things do not work. And when the
y do not work, we must change them. Now he has learned that money can be spent to buy the things he needs. He has learned how to budget, like setting aside money for his monthly Research.
The King also told me how he had not been able to ponder possibilities or think about probabilities.
‘To me,’ he said, ‘on a sunny day, an alien invasion was literally as likely as rain.’
‘The World in those years was a simple World of knowledge. Everything in it could be understood. Things that could not be understood were irrational, and had to be gotten rid of.
People, especially, were irrational things. And so I did not want to include them in my world.’
‘I am an honorary Earthling,’ he said, with a hint of pride. ‘I have earned the right to be one. There are many things in this World that I do not agree with. But I understand that they must happen that way, or that people must act in certain ways. I accept these. As an honorary Earthling, I do not feel lonely or rejected either.’
The King still has the dreams he had as a small boy. He always dreamt that he would open a Research & Development centre that would solve many problems. He thought about developing biofuel for Earth, new cures for illnesses and technology for disaster prediction and control. He said, maybe people could even find a way to divert the path of a hurricane.
He only understood much later in his life that everything needed money. A big and important Research & Development centre like that would cost billions of dollars. He learned to ask the question: “Where would I get money like that?” When he realised all this, his dreams evolved.
‘I found out about the notion of “long-term” solutions – the idea of sustainability,’ said the King. ‘How can an R&D centre like that, for example, be maintained for a good period of time, and not just eat up money and then itself? My dreams changed as I learned more and more about the rules of the World, but they did not disappear. They are still there.’
He then told me what his mother thought about it all. She said his interests were impractical, and was opposed to him advocating for the needs of people with autism. Things that the King delved in – books, building websites, having dreams – she did not approve of them at all.
How many children and youths have declared, ‘I’m going to be a millionaire when I grow up’? The grown-ups – rational, practical people – simply laugh and tease them, or scold them for being silly.
Is it the place of regular people, then, to point out all the possible problems with the King’s ambitions? To poke and prod and analyse like scientists, then shake our heads and deliver a sermon on how things simply could not work, oh, how they simply could and would not work.
I am truthfully not sure.
The 18th Step
I asked the King if he had any advice for regular people who live with special people like himself.
‘Especially mothers,’ said I. ‘What would you tell the mothers of special children?’
‘Respect the child and give him freedom,’ came his thoughtful reply. ‘The child will need more understanding on how the world works before anything else. Give him unconditional love; don’t expect anything in return. He may find it difficult to understand any love shown him, or he may show no response.’
‘I am not the same as before,’ the King went on. ‘If you had asked me this question when I was younger, I would have told you that people need to support our dreams. But I learned more about the World, and I understand now that sometimes dreams are not so simple. The World is not black and white. It has colours in it.’
I went on to ask the King about his family. Does he have any siblings?
‘I have a younger sister,’ he offered. ‘But I think I had always seen her as a kind of colleague at home. I had never understood what it meant to be an elder brother. I think I have improved at the task somewhat since then.’
‘I think of my capabilities in relationships and emotions as a computer system. I had always been stuck in MS-DOS, the old operating system. It took me much longer than a normal person to migrate to Windows. It is like when a computer executes commands, and those commands get stuck.’
‘When I learned more about the World, I found a way to solve the problem. I managed to get Windows to start. It was a new operating system. It started very late, and there was some data corruption, but it did start.’
‘There was a particular program that I had a lot of trouble running. This was the “empathy” program in my personality core. I resolved that too, to a certain extent, with time.’
The King has spent a lot of time in his life learning how humans work, in his own words. He has overcome the biggest obstacles, but is still learning. He admits that he does not have enough experience to know as much as he needs to. But conducting his own Research helps him learn.
‘Most parents feel that the most important thing for their child is to stop their tantrums, and build their academic life,’ said he. ‘It is all mostly about the school experience. They forget about everything else.’
I asked the King what he would tell people now. He thought about it for some time.
Finally he said, ‘People should allow the child to have ideals and dreams. Then help them to achieve them by practical means.’
To this, I thought, one would think that the solution would be to simply get the child to have practical dreams. But dreams are rarely practical, even for regular people.
This King’s name is Eric and he is a writer like I am, except that he has autism. He has written three books – “Star Child on Earth”, “Mirror Mind” and “Autism and Self-Improvement”.
I have an autographed copy of “Star Child on Earth”. It is signed and dated on the inside cover, where he has written: “All the Best to Your New Book.”
Chapter 11
The Queen Moves Across
The Board
The 1st Step
In a game of chess, the queen moves all across the chessboard. Now, if your opponent succeeds in stopping your queen, the game is over.
I shall tell you the tale of the queen and her moves on the chessboard.
Now, when a person needs help, it is very important to call the right people. If you were accidentally locked out of your house with no spare keys and called for an ambulance, you had better hope one of the medics used to be a burglar.
But sometimes it is not so simple. The right people are not always easy to reach.
Some years back when Jan was asking to return to school, my mother had called Pathlight School to enquire about a placement for him. She was told they could not accept him as the school was for those pursuing the mainstream curriculum. It was just another rejection from a small number of possible schools to call, and so she moved on to the next one on her list.
We once contacted the Autism Resource Centre for assistance. The receptionist on the other end of the line might have been having a bad day, and not been in the mood to be polite to strangers. We got the impression that maybe it had not been such a clever idea to begin with.
After lots of other phone calls, we got tired and adjourned for tea and biscuits permanently.
As you can see, dear Reader, it is far too easy to be a skeptic.
I was a nasty resentful elf of a skeptic once, especially during my late teenage years. Flowers and plants would shrivel and wither and crumble to the ground when I walked past. Believe me, I was the foulest of skeptics and angriest of critics. Everything in the world was wrong and needed fixing. And I thought there were people out there who should be doing the fixing.
Then I began to learn that a life will not be changed in any way unless someone acts to change it. Sometimes, we need to help the people helping us. (I do not, however, believe that this excuses complacency and being lackadaisical when helping people.)
As time passed, I began hoping for change in a good way. I wanted to fight for special needs, but not with anger. There comes a point in time when one tires of negativity. Why not fight with humour or good cheer? Imagine two gladiators of old facin
g off with shields and swords. One of them tells an excellent joke, and his opponent, without even drawing his sword, is felled by laughter. They might even end up being good friends after that.
The changes in the way I thought and saw things made me stop calling the ambulance for my locked door. I realised I didn’t need an ambulance. Instead, I found a locksmith.
I had the good fortune to meet Denise Phua, President of the Autism Resource Centre Singapore (ARC) which started Pathlight School. Denise also volunteers in Autism Association Singapore (AAS) which started Singapore Autism School (later renamed Eden School). She supervises both Pathlight School and Eden School. You may know her as a Member of Parliament for the Moulmein-Kallang GRC. Most important of all, she is the stout-hearted and spirited mother of a sixteen-year-old son with autism.
Are all these names unfamiliar to you? It is alright. Let me spin you a tale.
It all began with a lady, one of many, who gave birth to a son. He was soon diagnosed with autism. The lady was grieved when it happened, and she fell asleep like Alice in Lewis Carroll’s Alice in Wonderland. Only unlike Alice, her dream was a nightmare.
The mother met others like her, more and more of them, till she and her husband decided they wanted to rewrite the landscape for autism and other special needs, to make it better.
This mother’s name was not Alice, but Denise.
As she once wrote, “If we fail, at least we tried.”
The nightmare warped and changed. It became a dream instead.
The 2nd Step
Denise has a very simple wish after a few years of running Pathlight School. She wishes to see schools where students with different abilities grow up together as ‘members of a Singapore family’.