i autistic 我自闭

While it may sound politically incorrect, I confess that I did not like my mother who I felt often pressured me to do what I disliked. I was not alone in my sentiments. When I joined a family with an autistic teenager for dinner in Macau in 2007, my hopes of a peaceful dinner were dashed when both mother and son started arguing with each other while the father watched helplessly. That reminded me very much of my unhappy childhood and of the many stories I have read on the Internet. Why do many autistics hate their parents (and other people who care about them)? How do we do something about that?

In 2004. I was staying over in a village in Malaysia. I have arrived earlier in the evening and felt very tired. However, my friend, CB, decided to unpack his belongings at 1:30 am just as I snuggled into bed. The loud noises that CB made kept me awake. After half an hour, I demanded that he stop packing right away and continue the next morning. After telling me that he saw no problem with the noise, he ignored my protests and continued packing. An hour later, I was about to set up camp outside when he finally finished and went to sleep without saying a word.

Other than CB, I was with two other female friends. The next morning, we all agreed to fetch at least one bucket of water from the river as the running water was not working. Just as we were about to set off, CB abruptly excused himself and sped away. Thinking that CB intended to let us do all the hard work, the three of us felt upset with him. 15 minutes after we returned from the river, CB came back to the house with two buckets of water. Surprised, I asked him where he had been. He mumbled something unintelligible, left the water in the toilet and disappeared again.

If I did not know about autism and that (based on my observation) CB is autistic, I would have ended my friendship with him. From most people’s perspective including mine, CB is an unpleasant person who has no concern for others’ welfare. From CB’s perspective, I am probably the problematic person who has peculiar problems with noise and who jumped prematurely to conclusions before giving him the chance to do what he promised to do.

During an informal sharing with some Chinese parents in Guangzhou in April 2009, everything suddenly fit together: CB did not and could not know how my friends and I have accommodated ourselves for his sake. However, he could see all the demands we placed on him. Like me in 2003, CB would probably be complaining about how those illogical Earthlings were imposing social demands on him.

I finally had the answer to the parents’ concerns. I explained that the social and executive functioning disabilities cause the autistic child to be unable to see the sacrifices and “good” things that their parents have made. However, they could see very clearly all the “bad” things that the parents were doing to them. With that, I found words to describe my Social Accounting Model and its companion social skill strategy.

The Social Accounting Model posits that during social interaction, we are constantly crediting and debiting “social tokens” from other people’s accounts through our actions and words. Here is a list of the common types of social token transactions:

Let us take a situation where an autistic child demands that the mother buys a hamburger for him during lunch hour. As a result, the mother queued 20 minutes especially for the child. However, when the child receives the hamburger, his mother received no appreciation or gratitude. [Of course, she could train or force him to say “thank you“, but it would not have made any difference.] He even grumbled that due to the wait, he was very hungry. Later, the child demands ice cream, and this time the mother refuses. The child throws a tantrum and complains about his mother.

I posit that for people to appreciate gifts, the following conditions must occur:

During the hamburger incident:

During the ice cream incident:

Hence, the autistic child discounts positive social tokens while taking the negative ones at their face value. Over time, these negative tokens accumulate and lead the child to resent his parents and caretakers. The autistic individual then grows up believing that the entire world is forcing him to compromise every time and feeling unappreciated about his efforts since other people do not compromise for him.

Going back to the hamburger analogy, I continued to explain that even if the mother brought her child along to the queue, it would not have helped. Rather than feeling empathy for having to queue for 20 minutes, the child will simply think that his mother has forced him into another unnecessary and unpleasant situation. “Why can’t she just queue by herself? Why must I go along?”

Hence, I suggest that parents develop a PECS programme that explicitly trades social tokens with 2 open account books: one showing the credits the child has and the other showing the debits. Whenever they do any favour for the child, the child must be made aware that they owe a favour by having a record in the debit book. And if the child does a favour for the parent, this will go into the credit book. With that, both parent and child can reduce their misunderstandings.

Another extreme method I suggested is for the parents to employ a maid or helper who will play the “villain”, thereby collecting all the negative social tokens. The “villain” will stage a situation where he or she stops the child from getting what the child wants. The parents will then play the “heroes” who overrule the “villain” so that the child can get what he or she wants. The “heroes” will then make it clear to the child (perhaps with the PECS accounting system above) that they have just done a favour. When the “villain” has accumulated too many negative social tokens, he or she can be replaced with a new one.

After mentioning hatred, I would like to explore the topic of love which I believe that parents are equally concerned about. When I shared about autism, I have been asked if I love my mother. I could only answer the question as: “I do not love my mother the same way that other people love their mother. Yet, it does not mean that I do not love her.” This is where I must make the distinction between what I will call collective love and individuated love.

NeuroTypical children feel a special feeling that bonds them to their parents. This is difficult to place in words. It is as if a fondness rises from the heart, towards someone whose welfare we worry about, whose absence or death we will grieve and whose words are respected. This is a bond that makes another person special among all the people that we see every day. During my teenage years and earlier, I have no idea that such a feeling exists. As such, I saw my mother as my boss and my sister as my colleague. I felt no bonds between us – only a one-way flow of instructions from my mother to me.

Yet to say that I do not love my mother would be a disservice to the truth. If I see my mother fall, I would like to help her up. If I see her being threatened, I would protect her. However, this is not because she is my mother, but because this is the right thing to do for another human being in distress. This is the kind of love that sees everyone as equally important and equally deserving of help.

As I could not feel emotional bonds, I did not draw distinctions between human beings. Everyone was as much a stranger or a friend as everyone else – the only difference is how much I already know about them. If not for instructions from my mother, I would have treated everyone as equally trustworthy and helped everyone I saw.

For a person to feel individuated love…

Firstly, he must be aware that he exists. If he does not know that he exists, no conscious knowing or desire can exist.

Secondly, he must be able to experience meaning. Self-consciousness does not equate to self-awareness. A person may know that he exists, but he may not experience himself as existing. He may know that he has a body, emotions, thoughts, history and goals. However, these are meaningless if he does not experience them as his own. He may know that he lives in a family and has friends, but these are not his family or his friends.

Thirdly, he must in some way perceive the goodness, beauty and meaning of another person. [This perception is subjective and different for each person.] Only with this foundation can love form.

Fourthly, he must jointly participate in the personal story of another person, in the form of emotionally evoking activities or creating a positive change to a person’s life in a significant manner. Joint participation changes infatuation into love.

Lastly, he must feel the subtle bonding emotions, such as those between mother and son. These bonding emotions complete the experience of love.

It is easy to utter “I love you“, but to experience that is a different matter. It is easy to come to one’s mother for food, directions and protection, but to experience her as a nurturing provider is a different matter. It is easy to perform social rituals such as giving presents, but experience their essence is a different matter. Thereby, I ask readers to read beyond words and surface appearances to see the true love of autism.