Alhamdulillah, on 14 September 2019 (yesterday), I was given the chance to be the emcee of the event of Celebrating Autism Awareness Through Fashion, at Wisma Tun Fuad Stephens, Kota Kinabalu.
That event for surely has broaden my understanding about autism. I admit, it has been 3 years already of me studying child & family psychology, and I still struggle to grasp the basics of what autism actually is.
“Autism is a neuro-developmental disorder (not neuro-cognitive!)
that manifests itself in the following symptoms; saying things over & over (echolalia)
, flapping hands, obsess with certain things, blah blah blah…”
Yeah, I know that. 3 years of studying this; I already know this.
But why? Why they are flapping their hands? Why they are saying things over & over? Why they are obsessed with certain things?
I initially want to start by listing points of what I learned from this event. You know, like how I usually write about events that I’ve gone through.
But, you know what? For this post, only one of this would be enough. Because I believe, just like me before, many more people also don’t know what exactly this disorder is.
Like, what is cancer? There are abnormal cells growing inside you.
What is osteoporosis? Porous bones.
What is anemia? Lack of red blood cells.
But
what is autism? A neuro-developmental disorder? Of what? What is happening?
Well, in this event, Madam Ruth Arunasalam, the founder of Ruth Training & Development Academy, explained it very simply.
The word ‘autism’ comes from the word Greek, which means
self.
Which reminds me to another word of autism that I’ve read, in Japanese:
It is comprised of three ideographic characters, whose individual meanings combine together to form a compound word:
Jie = self
hei = closed
shou = disorder
Autism is a disorder where by the person being closed or shut within one’s self.
They cannot get out from their own world.
They are not wired in their brains to even do so.
I have a friend of mine, who’s diagnosed with Asperger Syndrome, which can simply be referred as mild autism, with no impairments in cognitive & language.
Here’s the thing; I’ve never seen her as someone who’s autistic. Like, someone who's abnormal. Not before, not even after the diagnosis.
To me, she is just who she is.
One day, upon knowing her diagnosis, she said to me:
“I’m sorry if I cannot read you, I just can’t.”
I remember being baffled with this. I was like, what do you mean you’re sorry? What I know is, she just does not care about people. She just says things as it is. I just thought she’s someone who won’t bother things.
But only now, I understands what she was trying to say.
It’s not that she wouldn’t read me, but she can’t. She’s not able to, whether she wants to read me or not.
It’s not that she wouldn’t care, but she can’t. She’s not able to, whether she wants to care or not.
It’s not that she wouldn’t bother, but she can’t. she’s not able to, whether she wants to bother things or not.
And do take note that she’s an Asperger’s, and she may at least have the capacity to learn about people to make herself socially functioning. But imagine the ones who are more severe.
Another episode, I remember a conversation I had, with a stranger, upon knowing that I’m studying children & family psychology. He said he has a relative that is autistic, and he asked me how to ‘cure it’.
I just said,
“You don’t cure autism. Autism is not to be cured.”
“Wait, what?” he asked again.
“Imagine you’re in a group of people speaking English, and there’s only 1 Mandarin speaker. Both of you don’t understand each other, and your group perceive the Mandarin speaker as ‘not normal’.
But, in reality, to function, do you need to wipe out his Mandarin & install full English in his head? Of course not, right? The most important thing is,
you need to learn the basics of Mandarin to communicate with him, and he needs to be taught on basics English so he could communicate with you.”
I remember giving this example as the basis of my knowledge that autistic children are in their own world. But now, reflecting upon it, I can expand it more.
Not only does the Mandarin speaker can’t speak English, even learning English is a challenge. With new letters, new characters, new grammar rules, and a whole bunch of things that mostly may not make sense to him.
As a result, what is perceived easy for those English speakers, maybe could be 10-100 times harder for the Mandarin speaker.
You get my metaphor?
Autistic people are enclosed in their world. And especially for children with severe autistic, easy things we do on the daily basis like eye-contact, handshake, listening to order, giving social cues, may be like climbing Mount Kinabalu to them (example given by Madam Ruth).
That is why it is crucially important for us to understand them. Because they can’t understand us, no matter how bad they may want to. Their brains are just not wired to do so.
But we can. We have the capacity not only to understand normal behaviors, but also the abnormal ones, their behaviors, and how we should respond & react to them.
What if we don’t?
Madam Ruth told another story, of an Asperger’s in her class, who would abruptly interrupt her lecture just to read to her a poem. She would usually said that she would love to hear it around 5-10 minutes before the class was over.
But, when that student is in the other class, with other lecturer, who does not understand about autism, when the student was again interrupting, he was being scolded badly.
(Sorry, can’t remember the student’s gender, but let’s stick with he)
You know what that results in?
Self-harm. By the student.
Don’t bother the details.
Again, for those who is not autistic, of course we would not do that in the first place. And even if we do, the least we would feel is annoyance & anger towards the lecturer when being scolded. Because we understand.
But, for those who is autistic, they don’t.
They don’t understand. They can’t understand.
And, that lecturer scolding, is being perceived as his world being pushed away. Completely.
Who won’t feel devastated when your world is being pushed away? Or when the whole world push you away?
Make sense that there are lots more of risk factors that contribute to suicide among Autism Spectrum Disorder patients
(although suicide in ASD is largely understudied).
Let me end this with a beautiful note.
Autism, although a disorder being characterized as
being closed or shut within one’s self, manifests in similar behaviors.
Do you know what this means?
Even for non-autistic people, our world may be unique, individual & different.
But we all universally have similarities.
There’s an activity at the event, where the participants are asked to color their emotions. Then, we compile all of them.
We can easily see that anger is monopolized by the colour red, sadness by the colour blue or gray, fear by the colour black, etc.
So, what I would like to share is, fear not that people won’t understand us. And fret not that people won’t comprehend our differences. As we humans, would always find universal ways, to communicate & to connect.
No matter how closed people are in their own world,
there will always be keys to open them up.
Don't give up hope.
Never give up hope.
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