Sarah Widdup

Falling to earth: the gravitational pull of ASD

Photo supplied by author

 

I can’t seem to switch off.

I wonder if it’s something a lot of people find hard to do.

It could have just a little (or a whole lot) to do with the fact that my son was recently diagnosed with ASD – Autism Spectrum Disorder, for those who don’t know the latest label.

It’s all a bit new, and honestly, quite daunting. I am the queen of doctor’s appointments and understanding what we’re entitled to, and making sure we’re seeing the right people. We are walking the spectrum and finding out where we (we’re all in this together) sit on its multifaceted expanse.

I also have to make sure we all eat, that the bills are paid and that there are clean clothes to wear.

The cat’s shit-tray needs cleaning and the dishes are piled up every morning.

I know, first world problems – they’re such a bitch.

How did we (and by ‘we’ I mean ‘I’) end up feeling such a clear need for someone to sort out all the hard stuff? I have a feeling that’s a question for another day, and probably for someone much more qualified to delve into the inner workings of stuff-saturated society than I am.

Let’s just blame it on the Internet for now.

Today they’re outside on the deck  – the husband and the kids – playing games and being daft, and I can’t seem to lighten up enough to join them. All I want back is that family cohesiveness that has seemed so elusive until now because of one thing or another. And yet there it is, right there in front of me, playing in the sun, and I can’t sit down and be involved in it. I have to stay vigilant.

I didn’t see ASD creeping up…well, that’s how I imagine it, although I know that these things are what they are, and have probably been there the whole time…and my guilt over that means I can’t let my guard down for a second – I’m on it.

So, anyway, regardless of all that whiny hoo-ha, we’ve been negotiating the tricky landscape of diagnosis for my boy, my little bear. Not only do I have the run-of-the-mill responsibilities of making sure we’re all healthy, fed and warm (and fuck me if it isn’t freezing at the moment), but now I am in charge of my son receiving the best care in order to stop hating himself at the tender age of just five years old.

Yup, five.

How does that even happen? How does a sweet, kind boy of five end up thinking only the worst of himself? I am assured by various handbooks that it’s not my fault, but lordy, how do you not apportion just a tiny bit of blame to yourself when your innocent wee man says awful things about himself? Especially when there’s nothing essentially ‘wrong’ with him.

He’s just different, and often in the best of ways.

I really, honestly, have no idea. He’s had the same care and love (and I do so love my bear, he’s a little star) that his sister was lavished with. She’s a bright spark, my daughter, confident and wild and full of ideas. Comparing them, though, is evil and wrong and won’t be done in this house. He has so many strengths she can’t hold a candle to, and they’re different. You simply cannot compare kids.

That’s what they tell you anyway.

But how would we have known there was something different about little bear if we hadn’t compared?

This whole thing is whacked out.

The contradictions are stark and confusing.

The thing that scares me the most, though, is choosing his supplementary carers – complete strangers, at least initially. How can I, as a complete novice, choose the right psychologist or speech therapist to help my boy start to feel better?

Did I even choose the right man to breed with?

Will he cope?

Does he understand the gravity of it all?

Rational, huh

…?

See that’s the thing. The gravity of the situation has hit me hard.

And yes, I can hear the multitudes muttering that it’s not about me. I hear you.

But the reality is that I’m responsible for my boy’s care, and for him this care could mean more than you think. How he’s helped now could determine how he sees himself and how the world treats him for many years to come.

I want that to be a good thing.

I wish the world were kinder.

I think I’m going to start by being kinder to myself, but for now, a Carlton Draught and some Ray Charles will have to do…

Perhaps ‘the switch’ can go to standby, if not off entirely…

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2 Comments

  1. Sarah said:

    Thanks Tanya 🙂

    It’s actually been some months since I wrote this piece, and the more I read it, the more I wonder how I managed to get so wound up. Methinks I’m an anxious lady, and possibly on the spectrum myself, that’s an article for another day though…

    You’re right too, he is really smart, and he is very wise, often piping up with a gem from behind his extensive collection of packing boxes and courier satchels (he’s also a hoarder, just like his mother). He is an amazing human being, and I’m a very lucky woman.

  2. Tanya Levin said:

    Hey Sarah,

    Don’t worry about a thing. They make it seem super scary and overwhelming but it’s not. It’s just different. I have an adolescent boy with ASD and there have been some really hard times. Mainly though, I have an amazing human being living with me.

    A lot more kids are isolated than you realise, bullied, and feel bad. You’re right, there’s nothing wrong with him.

    Please don’t let the medical model come between you and what comes naturally to you as a parent.

    It sounds like you did everything right by being yourself.
    It’s going to be fine.

    Essentially think of the rest of the world as neurotypicals (tippies as ASD forums will refer to them) and ASD folk are wired differently. That’s all.

    You will love his honesty and trust him. You may get sad if he has problems socially, but really, don’t we all? He will learn. Patience will be your best friend. If you find where it is wholesale, let me know…

    Because he may not be as caring of others’ opinions, he may love you openly and
    not try to prove himself with his peers which other parents struggle
    harder with.

    And he’ll probably be really smart, bore you with facts, and be incredibly wise. Don’t blame yourself or your partner. Congratulate yourself, and enjoy.

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