Quickly, she pressed the button on the car key to unlock her sport utility vehicle (SUV). As soon as she pressed her key, two clicks were heard from the car’s little locking device. She ordered her son to go inside the vehicle to get his day’s baon – a cup of rice and a scrambled egg. The sun was at its peak when she walked towards the school canteen to accompany her son while he took his lunch. But the son had one wish.
“Mom, I want to go to the computer lab to check my City Ville account,” he told Mrs. Peng So, his mother.
It was five minutes past 12 in the afternoon.
“But you have a class at 12:30,” she said. “Will you be able to eat your lunch that fast?”
“Yes, I will.”
“No, you have to eat your lunch first so you won’t be late for your class,” So said, almost annoyed.
So said and explained those words several times until they reached the school canteen as much as her son, Jacob, not his real name, insisted that he would want to play the game first. Finally, So was able to convince her son to take his lunch instead of playing the game before his classes started.
Conversations between So and his son would often end up in looking for a win-win solution. Jacob usually wanted something that his mom wouldn’t want to or simply, a wish that could not be granted.
When she talks to him, she said she would always assume that Jacob does not understand.
“I have to literally tell him everything,” she said, “I have to remind him well because he tends to be forgetful. I often ask him, ‘Do you have class today?’ And he would remember that he has a class.”
Jacob is no ordinary teenager. He has tried running after a Mitsubishi L300 with no reason at all except for the car is one of his fetishes, and would look at the inside only to leave it afterwards. When in another country, he would ask his parents why he could not see any L300 in the area. And when he fails an exam, he would at least crumple and tear his test papers, or vent his frustrations by throwing arnis sticks on the wall.
He is the type of person who would always treat everything in detail and in a literal sense. He also wouldn’t bear lying and when he tries to, So said it is easily seen on his non-verbals. Jacob finds hugging and kissing another person, even his parents, really difficult, and asking him to reciprocate the love given to him would be near to impossible.
“My father tends to play jokes with me,” he said. “But I tell him not to hug me. The reason behind this is perhaps due to my sensory issues. I feel harassed when someone hugs me.”
These oddities make Jacob one of the persons who suffer from a disorder called Asperger’s Syndrome. Asperger’s Syndrome, according to kidshealth.org, is a neurobiological disorder that is part of a group called autism spectrum disorders. The National Institute of Neurological Disorders and Stroke has estimated that there are two out of 10,000 children who suffer from the disorder.
Persons with the disorder are unable to communicate effectively with others, and have poor coordination. It is characterized by poor social interactions, obsessions, odd speech patterns, and other mannerisms. Like any other autism disorders, Asperger’s Syndrome is often difficult to diagnose and treat.
Jacob was only eight years old when he was diagnosed with Asperger’s Syndrome, So said.
“At the age of three, he wasn’t talking yet so I brought him to the doctor,” she said. “The teachers were telling me to go bring him to the doctor because something might be wrong.”
She had his body parts and organs checked and the doctors saw nothing physically wrong with him except for his speaking disability. He was diagnosed with autism at the age of three. After knowing about the disorder, they had him go to a behavior modification program and to a speech therapist to teach him skills, how to sit down because he couldn’t stay put in one place, and how to write.
Unlike any other person with autism, he was planned to be sent to a regular school. So said the idea of not enrolling him to a school for the disabled is that he might copy what is inappropriate.
But the most difficult part for Jacob’s parents was that, no pre-school wanted to take him in because of his disability.
“The schools said they don’t accept students like him, they’re not equipped, and so many different things,” she said. “Hindi lang nila siguro nila masabi na, ‘Sorry, may autism ‘yang anak mo eh’ That for me was outright discrimination so I took that as a challenge and decided to look out for other schools which can take him in until we found one.”
Jacob is now a fourth year college student at the Ateneo de Manila University taking up Bachelor of Science in Life Sciences.
Training up a child like Jacob is one of the toughest challenges So faced as a parent. When he goes into a tantrum, she said she just tries to understand that it is just one of his difficulties.
“I am just annoyed by the fact that no matter how I try to teach him, he does not seem to care,” she said.
She recalled a story of Jacob’s field trip to Fort Bonifacio when he was almost left by the bus because of being engrossed in an online game in one of the internet cafes in the area. She was trying to call him up asking him where he was.
“It really got me frustrated how more should I help this child,” she said. “This is how he is different from my other children. I guide him every inch of the way.” So has four children, two of which have autism.
She said she tries to be more firm with him as compared to his other siblings. The things she would expect her other children to learn in life could not be applied to him so she has to teach him everything, So added.
Jacob’s relationship with his siblings is not as deep as what people might expect it to be, So said. She said he knows that they are present, but would not engage in a conversation with them.
“But sometimes he would ask his kuya how is his business going,” she said. “I am happy that there are little improvements.”
Jacob’s interactions with other people are mostly spent online while playing games on Facebook such as City Ville, his all-time favorite. One of the avenues on which he interacts is through the cities and structures he creates online. Few of his memorable conversations would be talking with another autistic teen in the campus, meeting up with some attractive girls, and meeting with the members of the Ateneo Special Education organization who volunteer to help him interact with others especially during vacant periods.
“When faced with breakdowns, I end up being blinded by rage and so I trash around and become aggressive but never venting it on another person,” he said citing the throwing of the arnis as an example.
“When I ask Jacob why he is doing that, he has a difficulty explaining why unless we sit down in a quiet place and ask him directly,” So said, “Sometimes, I have to inject parameters of feelings and emotions. And we only have to respect what is important to him.”
Despite poor social skills, Jacob is able to compensate through his achievements. He remembered the day when he and his classmates were dubbed as “Manila’s best” in a competition they won. The achievement inspired him to pursue a career in Life Science, he said. He also plays the piano and was even invited to perform in autism concerts. Some of his interests include football, anime, war, and world history.
Nevertheless, Jacob still sees a hazy future ahead of him. He wants himself to work successfully in any environment, such as research and advertising.
“Only time will tell,” he said.
On the other hand however, his mom has a clearer vision of what she wants Jacob to be in the future.
“I want to see him working for family. I want to see him as a good father to his children. He will have a family of his own, a family that would love him for whatever he is,” So said, with a tear falling from her eyes. “At the rate of what he is doing now, he is progressing very well.”
A more understanding society
So is the Vice President of Autism Society of the Philippines (ASP), an organization that empowers persons with autism “to become the best of their potentials, self-reliant, productive, and socially-accepted.”
Asked to rate the society in terms of being aware of persons with autism, she gave it a six out of ten.
“Comparing from the way back, I bet we’ve gone a long way,” she said. “But I still want to society to be more understanding, to treat persons with autism just like anybody.”
Learning how to love
So remembered an incident when Jacob called her up and asked her why she wasn’t home yet at 12 midnight.
“Mom, where are you? How come you’re not home yet?” he asked.
“Sorry but I will be arriving late tonight, I still have some work to finish,” So explained.
“I fear that something happened to you.”
“Do you miss me?”
“Yes, I miss you mom.”
“That was not the usual him,” So said, “The next morning I asked him if he ever felt missing her before and he said no but he is starting to feel now.”
Hugging is also one of the most challenging parts in Jacob’s life.
“How does it feel when you’re hugging me? Can you imagine the love going from my body through your body from the touch I give you? It’s what you call love,” So said.
“It feels good but it’s difficult, mom,” he answered.
So said his arms would just hang on her shoulders and would not really touch her back.
“It’s an improvement though I know for a fact that he would not be able to reciprocate my love for him,” So said.
In an email interview with Jacob since it was easier for him to answer written questions seriously, he said that even though he is a difficult child, he would always try to impress his parents in all aspects of his life.
“I cry for two reasons on Jacob,” So said, “I would start to cry when I see people laugh at him, at the same time, I would also cry when I see him with walking and being happy with his friends.”