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...

9 comments:

  1. You are an amazing mother and I can understand why it would be hard to write those things, but ive never read something from this perspective and it really does help to understand autism and how it effects everyone involved. I do some work with intellectually disabled children and the thing that kills me is when I can't understand what they are trying to say and they get so frustrated, and sometimes I do to. I suppose it's all about patience, but sometimes there is only so much you can take!
    Good luck with your gorgeous little one x

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  2. NO WORDS CAN EXPLAIN HOW MUCH I LOVE YOU. AND YOUR BOY. WHAT AN ANGEL. FUCK YOU AUTISM. THANK YOU GOD FOR SUCH A BLESSED CHILD.

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  3. I have no problem with saying 'fuck you, autism.' I mean, why should I be its friend? But I have come to learn that autism is like that family member that does your head in, but you KNOW is here to stay. And so, you try to figure them out, understand what makes them tick, and enjoy them when they're playing nice. Love you too, Beau... truly. Your words mean the world x

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  4. Thank you SO much, Lisa. Your words gave me loads of comfort, especially as you have worked with special needs kids. My patience reserve is often tested, and then I find some more. Somehow. The rewards are, of course, huge. Every day is a new adventure. And sometimes, it's just shit x

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  5. Oh Hun, I feel your pain. Throw in rolling meltdowns, illogical to us - but totally logical thinking(to them, anyway!!), crappy sleeping routines, over sensitivity to sound, light, touch .... Need I go on .... Some days are diamonds and some are just completely shithouse & when they hit shithouse, they suck big time !!! Nearing end of term, hits shithouse each term .....
    Sending hugs your way xxx mwah mwah mwah

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  6. Thanks Leah... if anyone knows, you do. Sometimes we figure out the triggers... and at times, even when we THINK we have worked it all out - they throw us a curve ball. Hugs back atcha xx

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  7. Oh, Cass! I love you too. Those few words mean a lot to me. I know their intention... xx

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