Asperger’s, Parenting and Unexpected Change

As is well-covered in the literature of autism, people with Asperger’s have a love of routines and struggle to cope with change. What I’ve been realising lately is that this bald statement covers up the nuances of what this means in practice, particularly when you’re the parent of a seven-month old.

And it can affect two people with AS in opposite ways.

I cannot handle change in terms of things being added. I need time to process and accept things that are coming up. Ever since I was a kid, I needed plenty of notice – at least a week – to get my head around a visit from relatives, a trip out somewhere, or anything out of the ordinary. If not, I tend to moan, kick up a fuss, say some nasty things I don’t really mean, and then go along with it anyway. But I don’t have much of a problem with things being cancelled anymore – indeed, the principal emotion is relief I don’t have to go through the effort of painting on my ‘public’ face and holding onto a fake smile for however many hours. I would be a hermit if I could get away with it.

Lizzie suffers the opposite extreme: she can’t handle change when it’s things being removed. She is mostly fine with things being added to the routine, especially if she’s the one doing the adding, but if something is cancelled her first response is to throw a tantrum. I liken it to a person walking along a road and finding a brick wall blocking their path. While other people would try to find a way around it, or else turn back, Lizzie bashes her head against it until one of them gives – sometimes the wall, but most often the head. Actually, scratch that – most often the heads of those around her.

Babies, as some of you are well aware and others can easily imagine, are unpredictable. Not only that, the world becomes unpredictable when you have them. Visitors arrive with little or no notice, longheld plans need to be dropped without warning, and you have to rush off to the doctor out of the blue. It’s impossible to say which of us struggles the most with the changes having a baby has brought to our lives, but I can guarantee that I suffer the most.

Now, when I say ‘suffer’, I’m not being melodramatic. I’m not talking about the discomfort I feel at friends, relatives and healthcare professionals clamouring for our time or pitching up on our doorstep unannounced. Nor am I talking about the disruption that sudden trips to the shops for some vital knick-knack cause to my quiet, ordered life. Fact is, the baby’s needs come first. I have accepted that. My needs, as an autistic individual, are immaterial next to hers. I have made that choice.

Unfortunately, Lizzie is either unwilling or, by dint of her condition, unable to make that choice. And so I genuinely suffer.

Like before Christmas when Izzie had a cold and I hadn’t slept for two days. Sunday morning I was so tired I couldn’t see straight, my back ached, I was covered in snot and dribble, and my throat felt like I’d been swallowing razor blades. I hadn’t had the chance to drink, eat, go to the bathroom, since the night before. When Lizzie arose, well-rested, and made herself some breakfast, I asked her to please look after the baby for an hour to give me a rest. But she had planned to go shopping, and, unable to alter her plans, she toddled off for more than three hours of non-essential retail therapy. I suffered.

Or like a couple of weeks ago when I got a migraine about teatime. Lizzie had planned to go out, so out she went. I couldn’t open my eyes more than slits as the light burned, I kept seeing spots of light dancing in front of my face, and my head throbbed with every beat of my heart like somebody was burying an axe in my skull. Every time I bent forward, it felt like my brain was being forced out of my eye-sockets. But I duly bathed the baby, gritting my teeth and shouting in pain whenever it became too much; hissed as I dried the baby; roared as I dressed her in nappy and sleepsuit; cried out as I placed her as gently as I could into the cot; snarled as I sang her to sleep. And then I collapsed, nauseous, into bed. I suffered.

Or the other week in the storms – our village turns into an island during heavy rain, and three years back I wrote off my car by driving into floodwaters (the single-most butt-puckering moment of my life!). So although we’d planned to take the baby to town, I refused point blank to expose her to the risk of getting stuck down some country lane surrounded by cows pretending to be ducks. The sensible thing. Unless you have autism and can’t change plans, in which case you kick off like a wild animal, say some truly awful things, and then go out anyway sans partner and baby. It was only later she admitted I was right, it had been too wet and downright risky to go out in that weather, with or without the baby.

Now, as this is mostly a positive, light-hearted blog, I’d like to say that whenever this happens I smile wryly, roll my eyes, say, ‘That’s Lizzie!’ to hoots of canned laughter, accept that it’s just her autism, and forgive and forget.

But nor is this a fairy tale.

There is a lingering resentment bubbling away under the surface as my needs, and Izzie’s needs, repeatedly come second to Lizzie’s inability to alter her plans for the greater good. Whether she can help it or not doesn’t matter – the resentment is there.

I have heard it said before that partnering a person with Asperger’s Syndrome is a form of abuse – not for the Aspie but the poor neurotypical saddled with their unreasonable behaviour. As someone with AS, I disagree with that, but let me be clear – people with Asperger’s can be cold, insensitive, selfish pricks at times. That’s the reality hiding behind the innocuous words, ‘people with Asperger’s have a love of routines and struggle to cope with change’.

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