Sunday, September 23, 2012

Unexpected surprises: this is autism

The most unusual thing happened today.

And yet, it seemed like the most natural thing in the world.

I was at a chemist, getting my mother's medication, my mum in law in tow. That's not the unusual part - that's totally normal these days.

No, what was confronting and strangely exhilarating was walking into the chemist, spotting a cute looking 8 year old-ish boy, hearing him speak no more than five words... and knowing immediately in my bones he was autistic.

I'd never seen this boy before, never met his dad who was now in the process of using the counting-before-you-get-in-big-trouble approach ["Ezra! Okay, that's one, two...] and yet I was so drawn to them I just couldn't explain it.

"Oh, so you use the counting approach, eh?" I asked cautiously, as I slowly sidled up behind him.

His kind face swung around. "Yes, I have to. Sometimes... it works!"

"Yes, I understand," I nodded. 

I asked Ezra's father - Anthony, I soon learned - how old his son was. Eight. Guess number one: spot on. Ezra soon surfaced from behind the shelves of myriad toothpastes, incontinence pads, and strange slimming teas and showed me his gorgeous, freckle-speckled face, and tufts of beautiful red hair peeking under his kiddie-sized fishing hat.

"Hello Ezra! Nice to meet you!"

"Hello! Nice to meet you too!"

We spoke just enough for a few exchanged pleasantries - with both Ezra and Anthony - until I couldn't contain myself another minute.

"I hope you don't mind I ask you this question," I started gingerly to Anthony, in a lowered tone, "But... is your son... autistic?"

He paused for one second, enough to read my face, and replied: "He's actually getting a diagnosis to confirm his autism tomorrow!"

His face was a mixture of 'how did you know?' and a distinct wash of relief.

He continued: "He's actually been diagnosed with ADHD for many years, medication to treat it, everything. But now he has a new paediatrician [lined up by Aspect Australia, he told me, excitedly adding that he somehow got in after a few months wait, not the usual two years] and we are finally getting the diagnosis I always had a feeling about. I mean, they can diagnose autism at age four now, you know!"

I nodded. "Yes, my son was diagnosed at age two - and I just knew at age one and a half."

Funnily, not once did Anthony ask me how I knew about Ezra, or why I was even asking. Not at any point did he tell me to mind my own business.

And I in turn felt a wave of relief for a man I had just met. I mean, imagine: the wrong diagnosis all this time... and now this. Finally.

And as I said my goodbyes and good lucks with it all [in another strange-for-me move I asked for his number, as I'd like to check in with him in a few days] I left on a unusual high. To feel a connection like that with a stranger - and to have him excitedly tell me how very talented his young son is ["in kindergarten, he was the only kid in his class who could count to 500!"] - was so special.

I recounted the whole story to my mum in law [who had been - rather hilariously - using one of those weigh-yourself-and-get-your-BMI machines] and she didn't bat an eye. She knows me too well.

Later, I thought to myself: gosh, what are the chances of something like this happening?

Well, I have learned that the chances of anything like this happening are high, if you: ask, interact, be nosy, and cultivate curiosity. In every situation.

And the biggest, best surprises of all always blossom right before your very eyes.

In fact, unexpected surprises are at the very heart of autism... in every possible way.

Thursday, September 13, 2012

Target, Facebook, Autism, and how a feel-good story can turn negative, thanks to social media

Now this is an interesting post.

It demonstrates how social media can take a feelgood story - with all the right intentions - and mangle it, change its message, and give others the opportunity to cloud it with their judgement.

The positive thing to gain from this story is that it has brought to light that people with autism spectrum disorder are indeed active members in the community: they work, they contribute, they interact. Some have obvious quirks, some don't. [Or perhaps they are just better at concealing them].

Here is the recent post on the [US] Target Facebook page, by a father Jim Walter, who has a daughter diagnosed with autism:

Here are some of the comments:

Kenneth Snyder 

Yes, there are a lot of negative issues with Corporate America these days and Target is on the long list of companies that are not perfect. But must we become so posessed by cynicism that we have to mock the idea that a large corporation can do something right? There is no such thing as all good, but there's also no such thing as all bad. Yes, Target should hire the disabled because it is the right thing to do. But have you seen the real world lately? How many corporations do the right thing at all? If you have a negative opinion about Target, I'm not asking you to change it. All I am suggesting is that you wipe away the cynicism and negativity which is extremely toxic to the soul and at least open yourself to considering that Target is company you don't like but can still sometimes do the right thing.

Teresa Loffer I have a child on the spectrum and I too can pick out others as well, but there have been some who have surprisd me that I did NOT know were. The thing is, good for target. But let me say this. As a manager I had to repeatedly turn down a young man I suspected on the spectrum who was trying very hard to work for me. I had good reasons. I tried to tell him where I thought he SHOULD go to work. The people who I hire must be able to handle pressure, must be able to be SOCIALLY ATTUNED, and they have to work with NO SUPERVISION. As much as I'd have loved to have given the young man a job, I could not, in good faith, set him up for failure nor put my other clients in danger. It isn't a discrimination thing. It was heartbreaking to me to have to be that person to say no. But at the same time we have to also help our auties find the right jobs for them.

Darlene Smiley Hewitt I have a child with autism, and this story made me smile, and have hope! Companies SHOULD hire people with autism, they have many talents and could make very good employees, just might need a little extra help.

Lucien-Joseph Galloy That has to be the most pointless and irrelevant story ever posted here.

Darcie Merchant ‎@Lucien, I would much rather read an uplifting story about gratuity and love towards an individual with autism than about mass genocide in Africa. Besides, the "most pointless and irrelevant story ever posted" couldn't possibly be this. I mean, please, all the "sideboob celeb shots" have GOT to be in the Top Three.

Why do some people always take an incident that's supposed to be a positive tribute and turn it into something so negative?

Jamie Rose Hey I know I don't know you but. I work at old navy an we have an autistic girl that works for us. I was FURIOUS one day when a customer told me my associate was "annoying" her on the sales floor. My associate was doing all the same things I would do! I was so angry! Remember there are NO limitations just because of autism! Thanks for sharing your story

Darcie Kocan So he is a doctor than; therefore, he can diagnose someone because he has spent ten minutes with them in their line. Ok.

CrazyDave Fournier Darcie Kocan, way to be positive, him and myself must be doctors, cause I just diagnosed you with a case of the "way to be a bitc*" and sorry it looks terminal!!!!!

Nancy Harp Smith My son is also on the autism spectrum and is working at Best Buy. YAY for these companies who give handicapped individuals a chance, and YAY for the handicapped individuals who bravely face their fears and tackle the unknown to go to work each day.

You can read all the comments here:

And you can read the original Huffington Post story here:

Monday, September 3, 2012

Ten Things I Hate About Autism

Ten things I hate about autism.

Yep, I hate them.

Because they rule my life, can make our lives hell, limit our options, cancel our plans. Of course I love my son - desperately, and with all my heart - but this thing called autism is something that has a laugh at our expense, thumbs its nose at social etiquette, and generally can make a scene in public. Those who don't know me or my son may mistake a display of autism as bad parenting and a spoilt child. To those people I say a very simple, very polite fuck you [hey, this is my blog and I can say what I like, dammit].

- Travel is impossible
I have tried to 'not let autism win', but this one is proving to be hard work. Holidays mean routines are broken which is enemy number one to autism. I have just come to the realisation that cancelling that overseas holiday earlier this year is now something we probably can't do for, oh, another decade.

- Fussy eating is taken to a whole new level
It's all about textures. Sloppy and messy is out. Crunchy and neat is in. Think rissoles with pureed veggies. Trying new foods is hard, hard work. And then there is the exception to the rule - he now loves custard [potentially a messy, and definitely a sloppy food]. And Maccas soft serve cones. I know, not healthy. But in our world, it's an eating triumph as it's a sloppy kinda food. My husband and I can watch him, fascinated, that he has mastered this skill all by himself without spilling a drop of soft, soft serve.

- Change in routine is murder
This includes going away of course, but even a change in route, or a change in direction when we are walking somewhere. This can trigger a temper tantrum. And once one of those starts: yeah, good luck with that sister.

- Language skills are hard work
This is an obvious one, but it really makes an impact when he is trying to express himself but can't. But his language capacity has increased, oh, about 1000-fold. This time last year he knew two words. Now I have lost count of the words and full phrases he rattles off, in context.

- Toilet training is a nightmare
We are still working on this one. Yep. It's so close, I know it. And yet, not quite there yet.

- Ownership
Everything he sees he now claims as his own: "My tunnel! My row boat! My phone!" Which means if we see a tunnel, he wants me to go under it [I don't - he needs to learn Mummy can't always change route for him]. If he sees my phone, he wants it now. And so on. This one is a new one. Hellllooo, autism - it's nice to meet more of your personalities!

- Sharing
We have worked long and hard on this one this year. This is crucial, because he MUST understand the concept of sharing with his sister, with his classmates, with society. We have made exceptional inroads here, but we have a long way to go.

- Socialising is a learned skill
He will play alongside others, sometimes include them, but mostly not. But this is a vast improvement on his old self, when he'd be oblivious to anyone around him.

- Eating out = limited options
I am appalled to say that after the healthiest start to life [hello, homemade concoctions like pureed liver and veggies], it's now Maccas only when we eat out. And only chicken bite thingys. Oh wait, he did have chicken schnitzel recently at a party at a restaurant. But it wasn't on the pre-ordered menu and I carved it up just so. And had to hand feed him as I could feel a food-refusal coming on. Health food gurus, please don't bother: we are talking food-as-pacifier at a whole different level here. And let's not even start on not being able to sit still in a chair for long periods of time at a semi-swank place. Impossible.

[At home is a whole different story, though - I rule the kitchen here and it's pureed zucchini and broccoli hidden in minced chicken breast, for example. It gives me so much satisfaction I could honestly cry].

- Haircuts can be hell
I can happily report this one has changed. But it has taken three years. It was only the very last haircut [husb has claimed haircuts as his domain, so full kudos to him] that involved no tears, and no tools to divert attention [phone, Nintendo DS, etc]. This was a MAJOR triumph - you see, sensory overload means scissors can feel like razor blades on his head. So you understand why this is cause for elation.

Autism is a curious beast, and I often feel at its mercy. And yet, other times I am utterly fascinated at how it manifests in the every day: untold affection, a brain that ticks in a different way, an outlook on the world which marches to its own drum.

So, you see it's not my son I dislike, it's autism. But 99% of the time it's hard to separate the two. But we are slowly learning to be friends, autism and I. We have to be. We have a long way to go and are bedfellows whether we like it or not. So yeah, hi autism. Welcome. Just don't steal all the blankets, okay?

My son - if you read this as an adult, please know I love you SO much...