Reading Autism

Can I wish you a Happy New Year? I know, it’s already 11 days into January. But a belated is better than never, right?

I have been reading – and thinking and writing. Just that so much has been happening that I have not had time to sit down and let my thoughts percolate and write down those very thoughts.

This year, I am inspired to write more. Personal chronicles, of course.

I have not been doing much of personal writing last year and I think what defines me is my writing. It’s my way of expressing what I feel (and sometimes I feel a good many things before breakfast LOL).

You can’t write if you don’t read. Extensively.

I was loaned Anthony Macris’ When Horse Became Saw just a few days before the close of the year by Vern.

If you read this blog often, you’d know that Vern is a friend and neighbour. She pops by whenever she’s back from KL. She’s a brilliant thinker, an old soul at a mere 26. I know quite a few young people (I mean what else could I call them right? They are young. I am 14 years older so I have to admit I am older) and very few are thoughtful like her.

Vern knows I have this personal interest in all things autism because I discovered why Nic acts and thinks the way he does. I often proclaim that I discovered his autism by chance. In Borders bookstore of all places. (Remind me to tell you that story.)

Anyway, the past few years have been interesting because I am curious about autism. And precisely because I can “validate” my readings with a live sample (Nic), I find it utterly fascinating!

I’ve read Temple Grandin’s book and watched a movie made about her life. I’ve read The Spark:: A Mother’s Story of Nurturing, Genius, and Autism, an inspiring book written by a mother who didn’t give up on her autistic son and whose son turned out to be a prodigy.

I’ve also listened to an intense podcast episode on Radiolab called Juicervose. The episode was fraught with emotions but what was more incredible was the outpouring of comments after that podcast went live. (By the way, everyone should have a go at listening to Radiolab. I super love them, in addition to Freakonomics. These podcasts have helped me appreciate my world a lot more.)

I’ve known my husband for 20 years and married to him for 13 years. I always jokingly say that I’d be the first to write a book about being married to an autistic man. Every book I’ve read seems to be written by a parent (as in the case of Anthony Macris’ book which was published in 2011 or Kristine Barnett whose book came out in 2013). The rare ones are books written in the first person perspective by the very person who is autistic like Temple Grandin. Are there any written by the spouses of autistic people? I don’t know. If you know any, please let me know. I’d be pleased to read some.

I have a friend who tells me that her friend’s son is autistic and he has a hard time fitting in with the community but he is slowly learning. Then there are those who prefer to say someone has Asperger’s rather than autism (autism seems to be a hard label to own). And like Macris’ says in his book – everything he reads says that “there is no cure for autism”. That gets parents quite depressed!

But here lies the bit that is fascinating – what if autism is not a disease? What if you looked at autism as not something to be cured per se but as a different way of viewing the world? What would that do for you, as a caregiver or spouse or sibling?

People who are not like us are often viewed as abnormal. And abnormality is often seen as “not good”. There’s often a need to make abnormal people normal again so there are lots of methods to try to ensure an autistic person is “normalized”.

Sure, you need to teach kids (any kids regardless of their abilities) how to live in a community, how to do basic stuff (cook, bathe etc.) and essentially how to co-exist with others so that we can make up a functioning community. That’s needed and no one will argue with that.

But in the same vein, why don’t we rehabilitate or normalize geniuses? They’re abnormal too. Sure they’re smart – but they’re not exactly like us, are they? Why are geniuses placed on a pedestal and looked upon in awe when they’re abnormal? Why doesn’t society try to normalize them and bring them back to our realm?

I have these kinds of provocative conversations with Nic all the time. We discuss things which aren’t likely to be romantic like most couples. Maybe it’s because we’ve been working together for such a long time; that we are partners in life and partners in business and our conversations are always about stuff we read/discover/heard.

Maybe it’s because we both have a natural curiosity about the world and asking why questions help us uncover more what we don’t know. Or maybe it’s because we don’t have children and we’re not caught up in the day-to-day routines which most parents have to take responsibilities for.

If autism isn’t a disease, then there’s nothing to cure.

If that’s the case, then it is about helping autistic people to live with other people in a community and co-exist happily and comfortably.

On the flip side, it is also about understanding what happens in the minds of the autistic person and more importantly, knowing how to leverage how they think and see the world so that they can help us!

For the longest time, I never understood why Nic loved weeding. He’d squat out in the backyard and spend an inordinate amount of time plucking weeds. I just thought he was weird. OK, maybe even crazy!

He later revealed that plucking each blade of unwanted grass was a pleasurable sensation. Each plucking motion was unique.

Early in our marriage, he would get frustrated with me because I couldn’t see the things he saw in his mind’s eyes. We’d get into major rows because of this. He’d say “Why can’t you see this? It’s so simple!”

Only later when we found out he was autistic that he realized he sees real-time movies in his head and he could easily “see” things in his mind. This makes it easy for him to do troubleshooting when our clients called to ask about a problem. He could easily “pull out” the image or visual and know exactly what issue the client was having! I have no such abilities.

But before he realized he was autistic, he thought the whole world was like him – able to pull up a visual and see 3D images (which can be rotated, viewed from the top or viewed from the bottom)! So he got really frustrated because I kept saying “I don’t see the world you see and I don’t know what you’re talking about!”

When we realized he was autistic, I started reading a lot just to understand how the autistic mind works. I must admit that he has some truly amazing abilities yet his super sensory abilities can be a liability too.

Take for instance, sounds. I often found it funny that thunder affected him deeply. He’d recoil when he hears thunder. He tells me that thunder is very loud though to me, thunder is  just thunder.

Or his fascination with watching sunsets. I do appreciate an amber hued sky when the sun is setting but I am not particularly in love with the sun setting. Yet Nic never fails to watch the sunset intently until one day I heard a podcast about a woman who could see more colours than others. She has a heightened colour sensitivity and found great pleasure in looking at colours, able to differentiate the varied nuances in a colour! So I excitedly asked Nic if he was watching the various colours in that orange setting sun and he said, yes.

All I see is just a swath of orange!

The super sensory abilities extend to foods – especially sour foods. For a long time I just thought Nic didn’t like eating sour foods until he told me there are gradients of sour in the foods that he eats. His tongue detects the different gradients of sour – some he enjoys and some he hates. He hates passionfruit sour with a vengeance though he likes apple cider vinegar, tamarind, ‘kiam chye’ and ‘asam boi’.  To me, sour is sour. I have no spectrum of the degrees of sourness on my tongue.

Even the breeze affects him. He enjoys the pleasurable breeze but unlike me, he feels the subtle nuances of the breeze on his face! I could never differentiate the feel of a breeze.

Why am I excited and hopeful? You might think I am nuts to feel like this even after discovering my husband is autistic. I should be worried. But I am not because he is an example that you can live with your autism and yet use your abilities to the max. His abilities have helped him make the most of his world and work.

Of course he is not skilled in everything – he couldn’t possibly be. I often berate him for his lack of empathy which does not help his social skills. When he looks at something, he can deconstruct it and view it as both content and overall structure (which I cannot do and this is where I suspect his empathy disappears).

You see, if you’re de-constructing something in your mind, you are focusing deeply on content and structure and this is a highly objective exercise. You can’t de-construct if you’re emotionally involved. Like how I can’t think straight when I am angry. Something has to be sacrificed.

Yet in Nic’s mind, he can split up the parts of everything and re-assemble them. If it is an object, he can transform it into a 3D image where he can easily rotate, view from all angles. He can immediately see what problems the object could have. He can do so because he is focused on the object and its structure. But as I told him, when you do this, you need to suspend emotion. Perhaps that is why Nic isn’t as emphatic as I’d like him to be. The data consumes him. His brain starts ticking and working out the various possibilities, analyzing and “playing” with them.

So what does this have to do with other autism people?

The jobs or tasks we find boring (like weeding) are extremely enjoyable for autistic people. Repetitive tasks could be given to them and they’ll do very well. Of course I don’t advocate you hiring an autistic person to weed your garden (but then again, he’d probably do it for free!)

The questions are: what could autistic people do with their enjoyment of repetition? Or how can we stop looking at autism as problem that needs to be cured but instead ask, how can their abilities complement us, the non-autistic ones? Can their abilities help us innovate in business? Can their abilities be a peek at the technologies of the future? If we read more and understood more about the autistic brain, could we not co-exist with autism in ways that serve us?

Nic often mulls that one day we should be able to help. In his words, autistic people are different because their operating systems are different. It doesn’t make them any less human. Once we understand that there is a different operating system out there, it’s about understanding what that system can do and working in tandem with that system.

Right now, everyone is bent on re-configuring that system to be like a regular operating system and that’s tough. How about appreciating that unique operating system and working with that?

I don’t have all the answers and I am not an expert on this matter. But I think that’s a better way to approach autism.

Firing Your Friends…Or So-Called Friends

friends and friendship

This year has made me realize a few things – that I have less patience for people I used to have patience for.

I think growing older and interacting with people of all kinds of backgrounds made me re-evaluate my relationships. Some of my relationships go way back to my secondary school days. Some relationships were started in university. Still, some were started during my working days.

I guess we all start the same way – we don’t really choose our friends. They chose us and we accepted it and we all got along fine.

I never bothered to evaluate these relationships but I am someone who treasures and values people. In many ways, I discovered that not everyone valued relationships the way I did.

I am sure you know a friend or two who will disappear for aeons, never call or even meet up but the moment they need something, they’d be all over you.

Ah yes. Those kind of “friends” get booted to the very bottom of the D category.

Then there are some friends who grew up with you but somehow you felt that they’ve never changed. In a way, this can be good. After all, you know that this also means they’ll still love eating nutella and chocolate and getting them gifts is super easy.

The not-so-good thing is that suddenly you feel out of place with them. You’ve grown and I am not even talking about physical growth! Sure, our waistlines have expanded and our faces are plumper and our cheekbones don’t stand out so much. But mentally, we’ve changed too. I can’t quite put my finger on it but I felt I’ve moulted so many times in the past 15 years that I am no longer the old me. And yet, these friends are still the same. In every dimension and thought. (The middle class syndrome is a mind-eating disease of the well-fed.)

Many years ago, I used to get terribly disappointed with them. Our conversations get harder because our topics and hobbies and interests are different. Each time we go out for coffee, it’s an uncomfortable chat.

Until I decided that I should not see them as I am, I should see them as they are. This is where they are truly a product of their social circle and environment. When I switched my thinking this way, I became less jaded. I could even indulge myself and partake in their conversations which are totally out of my usual chit chat sphere.

I did not judge – I just accepted that they are what they are and I just stepped into their world for a while. It made me happier. I wasn’t going to change anyone and no one was going to get hurt. I’m not so invested in them anymore but we’re still OK as friends. Something had changed but by not putting all my hopes into these friends, I have an easier time.

Then there’s that other category of friends whom I used to call friends but were actually acquaintances. I had a friend during campus days who used to be such a negative person. Upon reflecting I figured out why she was so hard on everyone. She was hard on herself. She saw herself as a competitor in this world and she had to be the best. At one time, she was so obnoxious she went up to another girl and asked her, “You don’t study at all so how come you got such good grades?”

We tolerated her on campus for 4 years. Many disliked her intensively and would walk the other way if they saw her coming! I’m so ashamed that she was my “friend” for 4 years and that I didn’t have the guts to tell her that she was nasty and obnoxious.

The good news was, we lost contact after graduation. The bad news was, each time she needed something from me, she’d somehow locate my phone number and call me. I never dreaded anyone calling but she took the cake. Talking to her for 5 minutes was like torture. She’d be all snide and catty. I still wondered, why the heck did I ever tolerate her?

And of course, this friend disappeared after a while. I was secretly thanking God that she’d left me alone.

Until Facebook re-connected us again. She started using another name and I had added her as a friend, not knowing that she was that dreadful person. She started privately messaging me one day and I had the shock of my life.

This time, I had to do something. I un-friended her. I never felt more relief in my life. I should have un-friended her years ago but finally, something snapped. My patience was running thin. I no longer felt I had anything to lose by cutting her out of my life.

Then there’s another who’s always asking for help but never helps in return. He’s always up to something or other and will happily ask me for help. When I ask him for help, he’ll make some excuse that he doesn’t have any contacts. These freeloaders are the people I ignore.

Another kind of friend will always eat with you but never fork out a single cent. Ah yes, these friends are aplenty. Their wallets and purses are often glued to their pockets. I have encountered many. But these friends will only see me once at best because we will only dine together one time and that’s it. If you cannot be generous and pick up the tab once in a while, you don’t deserve to have a dinner companion.

These days, I am more aware of myself and more confident of who I am becoming. Yes, you get to a point at 40 when you go, “What the heck!” I have nothing to lose by removing deadwood from my life. I only want to be with people who appreciate and value me; not parasites who come and go as they please.

Sure I am a giver when it comes to friendships. I am intensely loyal. I will go the extra mile for you. But don’t manipulate me. Don’t give me a whiff of your ulterior motives or greed. The moment I sense that, I will be awfully brutal. Remember that ditty about the girl with the curl on her forehead? “When she’s good, she’s very, very good. When she’s bad, she’s horrible”.

I strive to be the A type of friend – the bestest friend you’d ever have. And if I leave, you’ll have a gaping void in your life.

This morning, I did something I am proud of.

I finally decided to cull yet another person from my life.

I had tolerated her for a long time, overlooking her obsessive compulsive behaviour and her control freakiness. She was often hyper and excitable. I really don’t know how her poor husband lives with her. She is also stubborn and thinks the world revolves around her. I decided enough was enough and I wasn’t going to be her friend the way she wanted me to be. And I heaved a major sigh of relief!

Like all other things in life, once in a while we need to re-evaluate our friends. Are they the kinds of people we want to surround ourselves with? Do they complain all the time but the moment you suggest a plan of action they shut you out? Are they friends and enemies? Are they ready to jump on you the moment you falter?

If yes, be a dear and start eliminating them from your life. I make no excuses for being so upfront about my relationships because I thrive on the absolute good ones. Good friends make you better. The crappy ones are energy and time vampires.

Do you have weirdo friends? Are you as brutal as I am? What are your coping strategies?

My Lean In Story

Below is a story that I wrote to share at tomorrow’s Lean In networking tea at China House Cafe.

Emi and I are planning to announce the book project at this tea.

We plan to create a role model book of sorts – a first for Penang anyway – to document our own personal Lean In stories inspired by Sheryl Sandberg’s book of the same name.

One of the things that’s startlingly obvious is that we don’t have a book of local women heroes and trailblazers (yes we have a lot on famous women and celebrity women but what about local women, local heroines, the everyday woman?).

In the last couple of months, I have met some super smart women and I believe it is high time we recorded our own Malaysian history – of incredibly accomplished yet virtually unknown local women who are doing excellently in their own fields.

If you’d like to contribute a personal story to our Lean In book (and we’re still sourcing for sponsors!) please do.  In the meantime, let me know what you think of this story of mine.

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I used to work before I joined my husband in the business. I always tell people that if I didn’t run my business, I would be just as happy out there in the corporate world, having worked for 7 years before I took a break to do my Masters in Linguistics.

I thought I was quite a self-aware individual. 

Until I read Sheryl Sandberg’s Lean In book. 

I thought I knew what I knew about myself and the world. And here I was, nodding vigorously as I read her book. It felt like someone you know is telling you how she viewed the world and you find yourself going, “Ohmygawd, me too!”

Suddenly women didn’t feel so alone and ridiculous with their thoughts. 

It felt very emotional at times too because Lean In addresses issues which are close to women – it doesn’t matter if you’re single or married, working or not. Of course her book is targeted at women who work but I chose to look at it as a universal message for all women. 

While some lambasted her for the book, I believe she opened a door to discussions – discussions that most women would not have engaged in if she had not put those messages out in the open.

With her book, we realise that women have stop underestimating their abilities. It doesn’t matter how accomplished you are or how high you are on the corporate ladder. Most women have insecurities. 

We’re often not good enough, not clever enough, not confident enough. 

Over the years, I have learnt to focus on my strengths. Never believe it when books tell you to work on your weaknesses. You can but it will be so de-motivating. Work on your strengths instead – and I find that I am more energetic and enthusiastic when I am doing things I am best at, for instance, writing. And work on the messages that your brain tells you. Many of the messages are negative and throw you into a spiral of, you guessed it, underestimation of abilities!

I was once at an event where I watched a smart, articulate corporate woman give a good presentation. When I finally caught up with her after the event, she turned to me worriedly and asked, “How did I do? Was I OK?” 

Another friend always starts apologizing for her inability to park her car each time she tries to park her car. She doesn’t believe she can park her car properly and she doesn’t. Some people believe they’re always unlucky and guess what, they’ll end up having episodes that reinforce their bad luck! 

I think we need to be aware of these negative self-talk. This negative self-talk is dangerous and allows women to underestimate themselves, even when they’re excellent at what they do.

This reminds me of my own childhood. 

I was a very shy child. 

In school I used to watch my best friend go right up to the front of the class and animatedly launch into fantastic storytelling. She was unafraid of standing in front of 40 pairs of eyes and telling her story complete with gestures and facial expressions.

I wanted to be just like her! She was good at storytelling and everyone envied her skills. I didn’t know how she did it but all the same, I wanted to be just like her. 

Despite my fears of public speaking, I decided to raise my hand the next time our teacher asked if any of us wanted to join an inter-class storytelling competition. 

I decided to do what I feared most. 

Did I know what I was getting into? Nope.

Did I know it involved days of committing the story to heart and having to re-tell the story with all the enthusiasm and passion I could muster?

Did I win? 

No.

But did I learn something? Yes, I learnt that I could try and trying is better than sitting at the sidelines, watching others live life. 

Of course I wasn’t as magnificent as my best friend in storytelling – she had a natural flair. However I went on to join school debates and a whole lot more because I knew I could not underestimate myself if I wanted to reach out for what I wanted.

I would always give myself a chance to work things out.

That one tiny step – of braving myself to take part in storytelling – allowed me to move a little more out of my shell. It made me a little more sure of myself. It gave me the courage to try things, one step at a time. 

And once I read Lean In, it all fell into place for me. 

Women need to sit at the table, to welcome unexplored opportunities and to stop giving excuses.

We can all succeed if we stopped holding ourselves back from that project, that opportunity, that promotion especially if we really wanted to jump in and get going. We can all succeed if we stopped worrying about the future that’s 5 or 10 years away because we’re deciding to live life to the fullest today. 

I wish I read this book when I was just starting out after graduating.

It would have been such an inspiration and confidence-booster. To take heart that we all have abilities and we don’t need to underestimate ourselves but to just have fun and gun for it. 

No one gets anything if they don’t think they deserve their success. 

No one gets anywhere if they don’t think they’re good enough. 

Sheryl says, believe in yourself, negotiate for yourself, own your own success. 

It does take time and experience for each of us to feel truly comfortable in our own skin before we can truly own our own success. We will make many mistakes before we can be cool enough to admit we’re fine the way we are.

But we also need friends who support us. Or encouraging stories of women who have been there, done that and that road is not as rocky as it seems.

Or women who are kind enough to mentor us and teach us how to ask for a raise, how to say no firmly and how to evaluate if something is worth doing. No one teaches these things in school or university and we’re left grappling with issues and trying to find our way in this world. 

That’s why I look at Lean In as a leadership manual. It has given me permission to give myself an opportunity to try. That is how I got involved with facilitating at the Lean In Forum at Hard Rock Hotel. That is how I got involved with this book. That is how I am writing a non-fiction book on my own. 

A year ago, I would never have thought I’d write a book. Not because I couldn’t write. I majored in Journalism and I have been writing ferociously since I was 9 years old. Everyone tells me that if anyone were to write a book, it’d be me. 

I knew I had the skills. 

But deep inside, I asked myself, “Who am I to write a book, and a non-fiction one at that too?” 

It was a fear that gnawed at me and that monstrous fear kept pawing me, pulling me back. I didn’t feel I was worthy enough to write a book despite having the skills!

I have to say that Lean In gave me the courage to ask, “Why not?”  

Why should I not share my message with the world? Everyone has opinions and perspectives to share and mine is just as valid as the others out there. Why shouldn’t I be proud to talk about what I am passionate about? 

Every girl and woman should keep asking “Why not?” over and over because frankly, there is only one life to live. We might as well live large, exceptional fulfilling lives! 

 

Restart, Renew, Refresh…

As you can see, my blog got a facelift. I was getting quite sick and tired of the old visual. Wanted something contemporary. Something clean and neat. And hence, this new look.

Anyway, besides the new look, I am looking forward to a couple of things. I have some plans in mind for 2015. That’s just 2.5 months away. I like starting new projects and I love writing goals down. It’s not for everyone but it’s definitely me.

Read moreRestart, Renew, Refresh…

Childhood Food

I wanted to post up stuff about my trip with my parents to Hong Kong but honestly I got a little lazy since I had to resize the bunch of photos.

Anyway.

That will have to wait until I am in a less lazy mood. Actually it’s not that I have nothing to say. The problem is, I have plenty of things I want to write about. But the thoughts and ideas fly by like mozzies.

I was a facilitator at a Lean In Forum in early July (and yes, that begs for a post of its own) at Hard Rock Hotel. Don’t ask me why it was at Hard Rock. It just was. Apart from the godawful long drive from my place in Bayan Baru all the way to Batu Feringghi, I just think it would have been a lot less of a hassle if it were held in say, E&O Hotel or Eastin Hotel.

But more of that later.

Today I had an interesting conversation with Nic at dinner. It’s kind of strange saying that as I am my husband’s business partner and if I am not out and about meeting potential clients, I am mostly with him. For breakfast, lunch, tea and dinner.

Read moreChildhood Food

The Malaysian In Me

Many, many times I catch myself saying – “I am so grateful to be living in Penang!”

You see, this is a fab place. And more often that not, we islanders forget we’re on an island. A sunny one.

A friend who called from Melbourne said she was wrapped up in 3 layers of clothes because it was super cold now. Another friend who lives in Newfoundland told me it was snowing in May over there.

And I don’t have to listen to the weather report before I leave the house.

I don’t have to carry a coat or umbrella just in case the weather turns nasty and cold or rainy.

Read moreThe Malaysian In Me

In Memory of Margaret

It’s been a roller-coaster of 2 weeks.

Margaret, our tabby of 10 years, has finally left us.

Margaret our snobbish cat
Margaret is one regal cat

It’s difficult trying to piece together the quick turn of events but I am coping, and Nic’s coping. Many friends have been extremely kind – offering words of solace and comfort on my Facebook page. Still, I am grieving because you can’t suddenly just accept and move on.

Friends have also asked me, “Would you consider adopting another cat or kitten?”

I am sure I am not the first to say this.

Many pet owners who have bonded closely with their pets treat their pets like family. Margaret was our family for as long as I can recall. And we didn’t adopt her – SHE adopted us!

Read moreIn Memory of Margaret

It Takes Two

The more I want to sit down and post my thoughts, the more stuff lands on my plate and the more they drag me away from blogging.

Such is life, sometimes!

I had a great Chinese New Year break – despite the fact I didn’t get to visit Bangkok with my parents, no thanks to the political unrest in Thailand. My sister and I were quite adamant that we go, protest or not but the thing with travelling with parents is that they INSIST everyone stay home and quit moaning about not going shopping in Bangkok.

I was so looking forward to a change in my Chinese New Year routine so we got our Air Asia tickets cancelled (and got the credit shell from them in exchange – they weren’t giving us back our money but credit shell was all right).

Read moreIt Takes Two

The Curry Mee Tragedy

I never knew how much I loved my Penang curry mee until my favourite hawker died.

Yes, she died.

Not while cooking curry mee, of course.

 

Penang curry mee in Georgetown Penang Malaysia
Yummiest Penang curry mee with some teh C on the side

You see, Nic and I have a ritual on Sundays. We potter into town and have a totally “ah pek” breakfast. I call it “ah pek” breakfast because it involves an old corner coffeeshop with loud patrons speaking Cantonese, hawker fare which are deemed typical of Penang and yes, it also involves some old-style kopi and tea.

We sit about this coffeeshop, enjoying its ambience – the sights and sounds of a regular coffeeshop can be quite comforting.

Read moreThe Curry Mee Tragedy

My Indian Roots

Chicken paretel that tastes as good as it looks
Chicken paretel that tastes as good as it looks

I tell people I have Indian roots. And if you know me, you probably know it’s true even though I look 100 per cent Chinese.

My Indian roots aren’t due to some inter-marriage or something.

My Indian roots come from growing up in a small town like Banting, where we had Indian neighbours on both sides.

My two best pals are Indian – one is a Ceylonese Christian (who hated to be called “Lain-lain” on her IC) and the other is Hindu. Many of my school friends were Indian. That is what real unity is about.

But that is what growing up in the 80s was all about.

Read moreMy Indian Roots