Monthly Archives: October 2010

Shutdown or speak out? What November 1 means to me.

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Twitter – that wonderful giver of delightful and disastrous news – was where I first read about Communication Shutdown. The web site said:

“It’s a global initiative to raise much-needed funds for autism groups in over 40 countries. By shutting down social networks for one day on November 1, we hope to encourage a greater understanding of people with autism who find social communication a challenge.”

On the face of it, I thought: “Well that’s great…they’re raising money for a good cause!”

But somewhere in the back of my mind, a tiny itch was forming.

It eventually hit me that it was the second sentence I had a problem with. How on earth is avoiding Facebook or Twitter supposed to help understand how people with autism feel when it comes to communication?

I fully understand that currently, social networking is a major factor in communication between people. However, it’s not the end of it. Let’s say I log out of Twitter or Facebook for the entire day. I can text, call or knock on my flatmate’s door and strike up a conversation with her. My not logging on to various social networks has nothing to do with social communication. If anything, it might help wean me off my Twitter addiction (which is an entirely different story!). Say I even manage to stay offline for the day. I’ll be back to tweeting and Facebooking the next day, won’t I? I’ll be smug and self-righteous about how I played a role in Communication Shutdown and now I TRULY understand autism. Not.

My brother has autism and I still don’t understand it fully. Until I moved to UK last year, I dealt with autism on daily basis and I still don’t understand it fully.

How dare anyone think that by giving up Facebook and Twitter for 24 hours, they will understand what it is like to be autistic?

I’ve seen various reactions on the internet that don’t agree with Communication Shutdown. I know where they’re coming from, but I don’t see the point of those either. April is Autism Awareness Month and innumerable events take place then in many countries to raise awareness about autism, much like October is breast cancer awareness month, November (or Movember as it’s called!) is prostate cancer awareness month. Surely these are there to facilitate awareness of the causes. Did we really need another day – that too, a contested day – to show awareness of autism?

You want to raise money for autism, go for it. But don’t tell people they will have a better understanding of social communication problems that autistic people face. For one, not all autistic people communicate the same way: my brother can’t talk. Another child with autism can. If you’ve seen one person with autism, you’ve seen ONE person with autism. This is NOT a one-size-fits-all scenario. And second, many people with autism use the internet to communicate, or use technology to do so (my brother can’t…see why one size doesn’t fit all?) … telling “normal” people to get offline is quite possibly going against how many autistic people communicate.

If you want to understand the problems my brother faces however, get offline, chuck your phone, stop talking to everyone and don’t communicate even by signs. And shut your eyes for good measure.

Then come and tell me you understand a bit more about autism.

For the record, I’m not shutting down. It won’t give me any understanding of what my brother goes through; I’d rather continue with how I always do. Autism is a part of my life. I’d rather stay connected, engage with others and spread whatever awareness I can on a regular basis.

Why would you hurt my brother?

Abuse. It comes in many forms: physical, emotional and mental.

When a person cannot communicate well, when a person is unable to defend himself/herself, it’s sad that that person gets picked on in some way or the other.

I read this open letter to DQ from Alterna-Mom’s blog and was aghast. A child with infantile autism and speech delays was mocked. Simply because of the way she speaks? Do you know how much time it can take for people with autistic disorders to communicate and be comfortable with themselves in unknown situations? How is it possible that compassion, understanding and tolerance disappears when it comes to something different?

In the comments of that blogpost, a reference was made to a UK court case. I immediately Googled it and found this: an Aspergers teen was reportedly tortured for days but the people who did it were let off with a community service rap (I do object to the use of the word ‘evil’ in the first sentence; not because I don’t agree, but because that doesn’t sound like balanced reporting, no matter how depraved the act was).

According to the news report, and I quote:

They kicked and stamped on his head, repeatedly punched him in the chest, beat him with a tennis racket, scratched his arms and leg with sandpaper, and threw him down a steep hill.

The terrified teenager – who suffers from autism and Asperger’s Syndrome – was also pelted with dog mess and forced to drink alcohol until he passed out. And, in a final humiliating assault, they applied tape to his genital area before ripping it off.

Community service orders and a curfew was handed out to the offenders.

A curfew. I had a curfew – still do when I live with my parents – and the worst thing I ever did was not clean my room. And my curfew wasn’t even in place because of that!

Why would you hurt my brother or someone like him? For fun? Because you’re bored? Because you think it’s funny to hurt the defenceless? My heart bleeds for the girl who was mocked and the 17-year-old boy who endured what he did.

Really … Why would you want to hurt my brother?

I judge my friends by how they treat my little brother

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It’s true. I do.

When I make new friends anywhere, it’s important for me to observe them when they meet Karan. Or if I mention he’s autistic, I want to see what they say. I’ve had a few people say they’re very sorry and I immediately think of ways to avoid them. I mean, I love Karan and I’m not sorry for who he is. Yes, it would’ve been easier for everyone – and even more so for him – if he wasn’t autistic…he would’ve led a fuller life, but his autism makes him who he is and I love him for all his quirks. Yes, even when he chewed my Lil Ms Chatterbox bookmark. And tore my t-shirts. And spat over my photo frames. Okay maybe I got a little mad. Moving on… 😉

It’s important for me to see how they behave around him, if they’re comfortable or not. Another indicator of this is whether they include him in conversations. I’ve had people pretend as if he wasn’t there – their logic I suppose was that he can’t understand us (or so they thought) so no point in talking TO him. People who talk to him…I appreciate them.

So yes…I judge YOU based on how you treat my little brother. Sue me.

Finding autism everywhere

I was on the Tube (London Underground for those who may not know) last evening. On the District line to be precise (random thought: why are the Tube lines the colours they are? What makes the District line green? What makes the Central line red?).

But I digress.

I hopped on to a train and picked a seat. It was blissfully empty, mostly because I was at a stop away from central London. When I sat down, even though I had my iPod Shuffle blasting Muse into my ears, I noticed a movement from the corner of my eye. When I looked ever-so-slightly to my left, a young man (possibly mid- to late-20s) was sitting at the end of the carriage, with a soda plastic bottle in his hand and he was grinning. And giggling. My knee-jerk reaction: what’s wrong with him? Has he had too much to drink?

In another 2-4 seconds, I realized, quite shamefully, I was wrong. He started rocking, babbling and laughing. He was most definitely autistic.

People were looking at him. Staring even. Avoiding him. They were afraid of him.

I left the train a few stops later and he was still there, crushing his soda bottle and stuffing his fingers in his ears. And my wish for him as I stepped off was that he reached wherever he was going safely.

You know what struck me right after? People are going to be afraid of my beautiful baby brother. He may be 14 now (though he looks much older), he may be taller than me for a good amount and he may be a hefty guy. But he’s still a baby. A baby who cries, crushes bottles, giggles randomly, stuffs his fingers in his ears when surrounding noises are just too much, and rocks when excited.

And people are going to be afraid of him.

Because he’s different. Because they don’t know what he’s going to do next. Because he doesn’t fit society’s expectations of what is “normal”.

FYI: being “normal” is over-rated.