Life With Autism: 'Australian Family' magazine

I need to be very careful about the frame of mind I am in when I write a personal story... especially about autism.

Last time we went away as a family I had LOADS to say about how much I - frankly - hate the disease sometimes. Yep, that piece, aptly titled 'Ten Things I Hate About Autism' was definitely shooting from the hip and raw as.

You can read that piece here.

Same with this piece, in the current edition of Australian Family magazine, about raising a child with autism. [Here is the cover, scroll down for more]:

Turns out, there is no easy way to talk about autism... unless you want to be inauthentic about it all.

Here is an excerpt about my experiences with autism. Yours may be different, of course.

Life with Autism

Here’s the thing about autism – it’s like an uninvited guest you have to pander to, put up with, be a yes-person to, and find a way to get along with, even though nobody said they could stay at your home, eat your food, and mooch around all day in their comfy clothes, while infiltrating every element of your life.

Autism can be very rude, disrespectful, arrogant, and flippant. It can change its mind at a moment’s notice and be utterly unapologetic about it. Autism can ruin travel plans, destroy holidays, have no respect for your ‘date night’. And when you say in exasperation, ‘It’s all about you!’, it looks at you like you’re an alien, and replies, ‘Yeah… and? Problem?’

If it sounds dramatic, maybe you aren’t fully acquainted with this beast called Autism. It takes over every area of your life. In every way. And never says ‘sorry’ about the collateral damage.

Autism is defined as a neurodevelopmental disorder beginning at birth, or shortly after. The symptoms have been described as impairments involving delay and deviance in social and communication development, along with restricted interests and repetitive behaviours.

The term Autism Spectrum Disorders (ASD) covers diagnostic labels which include: Autistic Disorder, High Functioning Autism, Asperger Syndrome, and Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS).

Early intervention

Make no mistake: as passionate as I am about communicating about autism and its negatives, I am equally passionate about early intervention and finding out about every single thing I can do. That’s because  my son was diagnosed with mild autism spectrum disorder at age two (although I just ‘knew’ at age 1 and a half).

I am also very much about highlighting the positives, and talking about the very excellent aspects of autism. Yes, excellent ones. There are things about autism that bring about the very best in those who have this diagnosis, as well as in those around them, especially those the mums and dads of special needs kids – if you have a child with autism, you know what I’m talking about. You find a strength you never knew you had.

No, there is nothing half-hearted about my approach to autism. We have a love-hate relationship that infiltrates every fibre of my being. When we hate each other, we really, really despise each other. But when we love each other… nobody else exists in that moment. It’s an intoxicating love, the kind of love where you feel glad to know each other, and are grateful to be exposed to its intricacies and quirks; because you know you must live together in as much harmony as you can muster. After all, you’re stuck together for the rest of your lives.

When a child is very young and you suspect autism, it’s a critically important time for early intervention, which can powerfully shift the child's future life course. So, finding out as much as you can about each other early on makes complete sense. The more you know about its foibles – and the sooner you know – the faster you can learn to get along and identify the triggers of autistic behaviour.

The argument to encourage early intervention in autism centres around harnessing the "plasticity", or ability to change a young child’s brain, in the hope that the path of their neurological development can be redirected away from autism.

Having lived this for almost three years I can attest that early intervention has had a huge impact on my son’s progress and development. With the various therapies, and my own learning which I then apply to our interactions together, well… it has made a huge difference to all our lives.

To continue reading, click here.here.

What is your experience with your autistic son, daughter, niece, nephew, friend's child, or child's school friend? Please share.

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...

Our Autism Adventures: why I started this blog

Living with a child with autism is one big adventure [though not always the fun, exciting kind].

And so, there was no better name than that for my new blog: Autism Adventures.

The site address is http://ourautismadventures.blogspot.com - and the adventures are indeed ours to share.

Rafael was diagnosed with autism at age two, although I suspected something was different about my son at age 1.

As a mum... you just know.

Plus, because he has a twin sister, I had the best barometer possible for gauging milestones. In the beginning, they seemed very much on par. In fact, Raf uttered "mamma" before Estella did.

But then... nothing.

There was no point being in denial - although initially, it was like a knife to the heart, and I gave myself a little time to grieve the loss of 'the perfect child'. You know there is no such thing as 'perfect', but - especially when you're a first-time mum - you have grand hopes and dreams for your little baby. Who will they be? What will they do? I of course still have these dreams for my precious boy... just different ones.

And so, I got to work to help my child: speech therapy, occupational therapy, a special playgroup, daycare with an aid teacher, all of which still happens today.

Next year is school - and there'll be many more adventures awaiting with that journey.

And so, here we are: a blog on thoughts and experiences and stories... 

They won't always be mine - I will have guest bloggers here all the time [if you'd like to tell your story, either under your name or anonymously, please drop me a line at josiegags@optusnet.com.au]. 

After all, I have found that the more we share about raising children with autism, the more real our stories become, and the more the stigma, the misconceptions, the misinformation is broken down. And that sense of commonality - about the struggles and triumphs, about the journey, the adventure! - can do nothing but good.

Pic: Life Stories Photography [http://www.lifestoriesphotography.com.au/]