On Autism, Motherhood and Tolerance

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Three years ago, when I told friends about my son’s diagnosis, a few of them told me about the movie “Temple Grandin.” I kept putting off watching it because I knew I would just cry, and I was tired of crying. I did read her book , Thinking in Pictures after a friend sent me a copy, and it was moving and eye-opening and encouraged me to help my son and believe he will be able to cope eventually.

My husband still has not watched the film and won’t. Like me, he thinks it will just be a painful experience. It was painful when I finally decided to watch it yesterday. It’s perhaps the only movie that had me crying from beginning to end, NOT because it was sentimental – far from being sentimental, I think the writers and director and Claire Dane’s portrayal of Ms. Grandin, achieved  a kind of objectivity in the story-telling – but because there are many details that I could relate to as a mother of an autistic child and as a person who self-identifies as autistic.

One of the most painful scenes for me was the mother’s conversation with the doctor who diagnosed Temple with autism. When the mother asked about the cause of autism, the doctor hesitantly answered it was a form of schizophrenia brought about by a lack of maternal affection. (This was in the 1950’s, and we can understand that back then not much was known about autism.) Temple’s mother cried saying her baby was born normal, and that Temple later changed; that she wanted to hug her, but Temple didn’t like to be hugged.

(I am just grateful that my son is very affectionate. That would’ve really made it worse for me if my son didn’t like to be hugged.)

The doctor also recommended that Temple be institutionalized, which her mother refused to do.

Temple is so blessed (lucky, if you don’t like the word “blessed”) that she had a mother who pushed her to do things that might have been uncomfortable for her but truly helped her to live independently. Had her mother let her be, she would have remained alone in her own world.

So many times I’ve read articles written by supposedly high functioning autistic people diagnosed in their adulthood, decrying the treatment they received from their parents or other carers  or teachers, when, as a child, they were forced to do things that they were uncomfortable with. And now as adults, they just want to be able to do whatever they want; they don’t care what others think about them; and they expect people to accept their autism (unusual behaviors, meltdowns, etc.). They expect, demand tolerance.

To me this is very unrealistic. You live in a society. You may not like the idea, but the truth is – you cannot live entirely on your own. You need people. You need society. Unless you go hide in a cave and live with the bats.

Temple’s mother knew this. Her science teacher, Mr. Carlock, knew this. Temple realized this later on — she had to change; she had to learn to adapt to society.

The world does not revolve around you. You are not special (though you may be to your parents). You are just one of the 7.5 billion people on this planet. Each person has his/her own personality, issues, problems. You cannot demand tolerance for your behavior when you are intolerant of their own. In this world, in our reality, you will meet all kinds of people – not everyone will accept you for who you are, yet you may have to sit next to them in class or at the cafeteria; work in the same office as them; serve them their coffee. You can’t just run away or be angry with these kind of people every time you have to deal them. You have to learn to adjust to different kinds of people because they too have to learn to adjust to people like you.

And this is one thing I hope my son will learn – how to live in society.

Perhaps I am like most parents of autistic children, I worry about how my son will live without me. I cannot watch over him forever. I sometimes wake up in the middle of the night thinking what if somebody hurts him at school, and he can’t tell anybody about it? What if as an adult, he will be taken advantage of, and he wouldn’t even know it?

Temple did not begin talking until she was 4, but her mother did not give up on trying to get her to speak. She did not want to go to college to talk with people, but her mother pushed her to do so, and she went on to pursue a Masters and a PhD.

There is only admiration on my part for Temple’s mom, her aunt and her science teacher – people who saw her potential, believed in her and pushed her to be the best she could be.

Not everyone has the financial capability that Temple’s family had, but I think every child can have at least one person who will not give up on them, who will not leave them to live in their own world, and push them to live more meaningful lives.

I have never been very ambitious. My best friend used to tell me I have a small brain because I want so little in this life. As a mother, I do not want much for my son either. I just want him to be able to live independently and be happy. And that’s my only goal.

That’s the only item on my bucket list that truly matters.

 

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On Living to be 100

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A few weeks ago, a friend and I exchanged thoughts about living to be 100, and this was my reply: “Nah. I really don’t want to live that long. Not even if I’m healthy. I’m curious about what’s on the other side. If there’s nothing, then at least I won’t be disappointed. ” 

And my friend replied: “Consciousness is probably overrated. “

For Christians and other believers of an afterlife, death is not scary as it means reunion with the Creator. It means eternal life of happiness. (I came across this post about death a few weeks ago, and the writer beautifully expresses, not exactly the same but similar, thoughts that I have about life and death.)

I have no idea how many there are like me , but I am one of those who are more curious about what’s on the other side, rather than prolonging our earthly life. I am not saying though that I would willingly abandon my responsibilities as a mother, daughter, wife, sister, aunt. My point is, I simply prefer not to live too long.

However, I have thought about the possibility of living a longer life. I once met an 86-year old medical doctor, who was quite spry — travellling back and forth from the US to Asia, attending medical conferences, seeing patients, doing Zumba. She’s enjoying her life at 86. Would I want to be able to do that at 86?

With discoveries and inventions in the fields of science and technology, people are living longer and healthier lives.  Not only that, it probably won’t be long before immortality ceases to be mere imagination and becomes reality with the ability of human beings to create cyborgs.

If I could stay fit till I’m 100, perhaps I would be able to do all the things I would like to do but in which at the moment I am unable to indulge. I have talked about this with a friend. We both could not understand how people could be at a loss as to what to do when there’s so many interesting things to do when you have the time and health to do them

I’m not sporty nor sociable, so I do not need to be with so many people all the time. If I could live to be 100, I would spend my time reading all the books I’ve been meaning to read. I would take photographs of beautiful flowers and landscapes, learn more about the human brain, study astronomy, volunteer to help children with special needs and starving children, go.out for morning walks, watch the sunset, and write down my thoughts about all these things.

So does this mean I want to live to be 100?

No. Not at this time when humanity’s mortality is still very real, when one can still witness the human body aging, when you can still hear people groaning in pain and watch them suffer emotionally , as they struggle to remember dates and names of people they used to love so passionately,  and suffer physically as they can no longer move what used to be nimble limbs that made them jump, run, throw or catch or hit a ball.

Having a body that slowly stops functioning one part at a time is torture. Seeing it happen to others is a scary enough reminder that it can happen to you too.

So, no. I do not want to live to be 100. “Consciousness is overrated.”

How about you?