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.

A Special Children’s Sunday

I was invited for the Handicapped Children Centre’s Open Day and Concert a few days ago (Sunday morning) by Josephine.

She’s volunteering with the centre and told me that the children, all 63 of them, had put so much heart and soul into this open day.

I dragged Nic along that morning, knowing that yes, we could laze about on a weekend but we could also lend some support to these special children.

Prize-giving to outstanding students of the centre by Penang Governor's wife
Prize-giving to outstanding students of the centre by Penang Governor's wife

The Handicapped Children’s Centre is on Grove Road, just behind the State Mosque [The Handicapped Children Centre is on 24B, Grove Road, 11400 Penang]. I had been here before in my corporate comm days as my ex-company was also doing some CSR for this organisation. It is in this peaceful residential area and away from the main road. Started in 1964, the centre helps school children who are disabled, children with Down’s and children considered in need of special teaching and special teachers (such as those with autism).

You know we take things for granted? At this centre, you will be reminded that you DON’T take things for granted at all. Some of the children have difficulty concentrating, holding a colour pencil is really a challenge due to limited motor skills and limited coordination. Other children cannot communicate well and are painfully shy.

Being able to remember is a cognitive skill we always take for granted.

Not so here.

For many here, counting up to 20 or stringing 3 words in a sentence are accomplishments to be really supportive and proud of.

Besides classroom lessons, these special children are also taken out on field trips to the bank, post office and shopping malls so that they get used to people and learn how to carry out simple tasks like banking, taking a bus and shopping.

The classroom walls are decorated with paper cut-outs of birds which the children coloured and I am surprised to learn that some of these children are not children anymore (most are teens but they are just acquiring essential skills to help them adjust to society). In fact, one of the boys, Julian Au, came up to shake my hand as I was looking at their artwork. He was shy but courageous enough to extend his hand in friendship!

Indian dance Bollywood style
Indian dance Bollywood style

Having this Open Day then is a major challenge yet achievement for both teachers and students given that the students do not function like you and me. Repetition movements are difficult because they forget so easily. Being in front of a crowd of parents, well-wishers and VIP guests and making eye contact is not something these children are used to.

A Malay dance performance called Lodeh Mak Lodeh by 8 special children.
A Malay dance performance called Lodeh Mak Lodeh by 8 special children.

As I looked at the proud parents and teachers, I was deeply moved by their enthusiasm and cheers. They never gave up on their children, no matter what disability or problems they were born with.

Mohamad Yassin sung a tearjerker Mandarin song much to the crowd's pleasure
Mohamad Yassin sung a tearjerker Mandarin song much to the crowd's pleasure

One particularly moving performance was a Mandarin song sung by an Indian-Muslim teenager in a wheelchair. The crowd came to a hushed silence as Mohammad Yassin began singing in perfect Mandarin. He had memorised the whole song and sung with confidence! It was an emotional moment as many parents started wiping away tears.

Contemporary dance using hula hoops by Lim Tze Jin, Choong Poh Yun, Tung Jia Yu, Joleen Neoh, Lim Chin Wei and Mohd Amir Fikri
Contemporary dance using hula hoops by Lim Tze Jin, Choong Poh Yun, Tung Jia Yu, Joleen Neoh, Lim Chin Wei and Mohd Amir Fikri

Another girl (also in a wheelchair) came out to recite a poem “Aku Menjadi Lebih Berani”. She surprised everyone by reciting it without referring to any scribbled notes!

We sat through the 2 hours and saw the concert from start to finish. It was after all the least we could do after these children/teens had practised for 6 months to get their moves right. The dances and singing may not have been one hundred percent perfect but it was their spirit that gladdened many a heart!

A lively Chinese ribbon dance
A lively Chinese ribbon dance

When you know that memorizing a dance step or a line of a song takes so much effort and time, you begin to realize that perfection is in the motivation to accomplish for these beautiful children.

The concert was graced by the patron of the centre, the Penang Governer’s wife, Toh Puan Hajah Majimor who was accompanied by the wife of the Penang Chief Minister, Betty Chew.

Everyone sang "The Greatest Love of All', event the parents!

It was fitting that the concert ended on a high note where each child sang Whitney Houston’s ‘The Greatest Love of All’. The lyrics were especially thought-provoking in their context.

Amazing art ability of one of the autistic students
Amazing art ability of one of the autistic students

I spoke to one teacher as I was looking at a row of meticulously hand drawn and coloured pictures of wild birds by an autistic 18 year old boy who studied at this centre. She said that once they reach 18 years of age, the children would go to Joblink, a centre that adjoins this Handicapped Children’s Centre. They are then paid to do small and easy tasks to earn a living. Most of the tasks were given by factories – inserting or packing products.

I had a great Sunday outing! And three cheers to these children too for their heartfelt performances.