I think I said I was going to break up my comiket experience over a few posts. Life got busy – and I supposed that’s a good thing. There’s a lot on my mind now, and instead of sharing it on Facebook, I will talk about it here.
When dad passed away 3 years ago, I sent my sister to be officially diagnosed. It was not to confirm or deny what I thought I knew, nor was it to categorise her. Rather, my sister needs a lot of professional help that was going to be hard to get without a diagnosis. I was rather glad it happened as it paved the way to many things.
At the same time, several things remained the same: My mum’s influence, the stigma against autism, the lack of enough support in Singapore for my sister and my terrible temper. Perhaps I am used to it by now, I just don’t seem to have the patience for my sister at times. And right after being angry, I would also feel guilty. I mean, why am I so angry at someone who have difficulty recognising the issue at hand?
“I am a little concerned.”
“coz x has grown long hair now but is unable to talk.”
I talk with my sister somewhat regularly, usually over Facebook messenger or Line. Discussions on the phone or over skype were often difficult, as she finds it hard to verbalise what she wants to say, and she has a strange anxiety about conversations. I am not quite sure what it is, but I feel that she is worried about getting the right answers to regular questions, like “how’s your day”, or anxious to answer you quickly. Over text messages though, the problems isn’t as prominent. she takes her time to say things, and I would correct her language as she goes along – though often she is upset by how bad her English is.
However, what is also interesting is her lack of, what we all took for granted and what we all think is “common sense”. I believe my mother started this, often making up answers for things that she could not explain with her minimal education. This allowed my sister to make up and believe little assumptions that she has not sought to prove otherwise. So, often, I see things from her point of view – which is, at times, all skewered, crazy and colourful. Like the above exchange – She presumed that babies would start talking once their hair has grown long – but that’s no real correlation between the two.
Where it comes to caring for her though, I sometimes find myself stressing over everything. I feel stumped. I feel like I am looking after a child, and I worry about making bad decisions for her. There’s no dad to talk to and consult, no comparisons to others (Since autism spectrum defers from person to person, case to case) that I can gauge myself by. I tried to gauge how she is doing by her level of happiness a few times, yet how do I know the “right steps” if she is sad too?
Whenever I leave the country, my sister is often the last person I see. I would watch her back slowly disappear into the sea of people, and often my heart breaks a little to see her cut a lonely figure in a country of millions. She has few friends, does not know how to socialise, make and maintain friends. Despite putting her through classes, sending her to therapies, asking her to go to church and her work place, the bonds she made were not strong, not lasting and still left her wanting for more.
“I feel so alone and stressed.”
In recent days, she was asked to leave her place of work. On the one hand, she’s glad to be leaving. On the other hand, she feels like a terrible person. She feels all she does is make a mess of her life and she doesn’t know how to fix it. She has had a few meltdowns in the last few weeks and no one can understand how she feels. I am pretty sure I further compound it too.
I wish that there is a place for her, where she doesn’t have to feel sad and lonely, but I am still looking.