Since it’s what I just said in the title, here’s a link to an article by Autism Wessex about my diagnosis with Asperger’s Syndrome:
Since it’s what I just said in the title, here’s a link to an article by Autism Wessex about my diagnosis with Asperger’s Syndrome:
Thanks to that funny thing called life (along with a chemical imbalance called ‘my brain’), I’ve been rather down of late, so I thought I’d cheer myself up (and others?) by recording those funny and weird things my daughter’s been doing. Because really, when you’re circling the abyss and getting ready to fall, there’s no better lifeline than a child’s laughter to pull you back from the edge (disclaimer: a child’s laughter is no substitute for a lifeline. Always use a rope from an accredited climbing centre when circling abysses.)
I discovered this last night while dancing about to John Denver as I was cooking dinner. It was, apparently, the funniest thing Izzie had ever seen. I’ve never heard her laugh so much. And nice laughter too. I guess in a few years, the laughter will come for a different reason, but for now she thinks I move like Justin freakin’ Timberlake, so that’s a boost to the self-esteem.
Of course, a slight blow comes from the fact I just realised yesterday that instead of singing about his lover, a hillbilly strumpet named Country Rose, John Denver was actually singing about ‘country roads’. So I’ve been singing it wrong for twenty years. Yikes! A bit like Jimi Hendrix’s ‘Scuse me while I kiss this guy…’
Which brings me neatly to sounds. Izzie has learnt two new sounds. The first isn’t so bad. It’s a loud, drawn out roar that combines hello, how are you, I’m Izzie, do you want to be friends and let’s play. A little weird when you’re pushing her round the village and she roars at everyone you walk past, but survivable.
The second sound is drawn from the depths of hell.
She’s discovered she can make a noise on the in-breath as well as the out-breath, but this in-breath noise is enough to make you shudder. It’s a gasping, choking hiss, like she’s being strangled or some strange demon creature has possessed her and wants to summon serpent warriors from a netherworld. It’s worst when you’re settling down to sleep and this freaky, banshee shriek comes through the monitor, sending a chill down your spine. You leap out of bed because it sounds like she’s having an asthma attack, but no, she smiles up at you, innocent eyes all aglow. And then roars at you in greeting. Creepy.
Actually, night time has become altogether weird. Three a.m. I’ll hear a noise and get up to check on the baby. I stand outside the door to listen, but there’s silence. I gently, oh so gently, push open the door, and then I see…it. This figure, dressed in white, bathed in the white glow of the baby monitor, standing up, motionless, just staring at the wall two inches from her nose. Just standing there. Not moving, not making noise. Staring at the wall. It’s like something out of Poltergeist.
Then she slowly turns her head to look at you. Ye gads, at three in the morning that’s enough to give anyone the heebie-jeebies!
Even weirder are the sounds from the monitor. A few weeks back it started playing piano music for a few seconds. There was nothing in her room that plays a tune. I looked at Lizzie, she looked at me. ‘Did you just hear -?’ ‘Yes, that was weird.’ Checked on Izzie and she was fast asleep.
A couple of nights back I jerked awake as I was sure I heard a man’s voice shouting profanities right in my ear, right through the monitor. But the baby was sound asleep.
And speaking of sound asleep, because she’s so active during the day, Izzie has started sleeping like a log. Or perhaps a better way of saying it would be that she sleeps the sleep of the dead. Half a dozen times in the past fortnight I’ve gone to check on her and she’s so still, so quiet, I’ve momentarily thought she’s dead. I watch for the rise and fall of her chest – nothing. I put my hand by her mouth to feel her breath – nothing. It then takes a huge effort of will to reach for her wrist and check her pulse, because I dread feeling cold skin beneath my fingertips. But she’s never been dead so far, so that’s good!
She’s developed a fascination with Grandpa’s cans of cider too. There’s this thing called object permanence – basically, once something’s out of their sight, babies don’t realise it still exists so won’t look for it, whereas later they realise things exist even if they can’t see them. Well, Izzie’s cracked that one – no matter where he puts it, where he hides it, she continues to look for it, crawling all over him like an alcoholic spidermonkey. Gives new meaning to the expression ‘monkey on my back’.
Her level of activity is astonishing. If I need the toilet during the day, I pop her down in her cot and go sit on the loo with the door open as it faces the nursery. Within seconds, a little hand will appear on the top of the headboard, then another, before the top of the head, eyes and nose come straining to get a look. She’s like that graffiti motif Kilroy Was Here. Watching me take a crap. Thanks honey.
It extends to nappy changes. You put her on her back on the changing mat and she immediately rolls onto her front and crawls away because she knows what’s coming. You manage to grab her by the ankles, drag her kicking and screaming back, take off her tights – she crawls away again. You hold her by the ankles, lift them up in the air, but she twists so her upper half is facing the opposite direction to the lower. In that odd, contorted position, you take off her nappy, clean her up. You let go for a split second, look away, look back to see a little naked bottom disappearing behind the sofa. At which point you think, ‘Sod it!’ and let her keep on half-dressed. Although it’s a bit like Russian Roulette – peace right now weighed up against the risk of having to clean poo out of the carpet. Sometimes peace right now is worth any amount of future scrubbing.
And since she’s just vomited yellow stuff all down my trousers, I’m going to sign off here. Like I’ve said before, you need a sense of humour to be a parent – otherwise, it’s just tragic!
Now that Izzie is crawling, standing, climbing and talking (albeit gibberish), people keep telling me how this is the best, most exciting, and most rewarding time of raising a baby. Those first months where she slept and cuddled and needed, needed, needed were boring, challenging, the hardest slog, but now that she’s interactive and starting to give something back, you can enjoy it. Now it gets interesting.
I have to admit, I feel the opposite.
It’s my belief that Asperger’s Syndrome is at root a problem with information processing. We have no problem taking in vast quantities of information, but our brains are so structured that we compartmentalize this data. It’s in trying to interpret it – to work out how it relates to everything else and what it all means – that we struggle.
I can explain it much better using an orange.
Imagine that each piece of information that goes into making a concept, activity or understanding about the world is a single segment of an orange. A neurotypical person only needs to see one segment, or at the very most two or three, in order to realise they’re parts of an orange, and since they know what an orange looks like, they can construct the orange – the concept, the understanding – without needing to find the rest of the segments or even really thinking about it.
Not so if you have Asperger’s.
You get a piece of information – a segment – and you store it in one part of your mind. Then you find another piece, and even though it relates to the first and is part of the same orange, you don’t have the faculties to realise this, so you store it in a totally different part of your mind. And you keep going like that, and even when you have all the pieces, and you’ve seen an orange before, you can’t work out what it’s meant to look like, so you cram these segments together, trying to work out how they fit, and throwing some things out, and adding bits that aren’t supposed to be there, and ultimately making something you’re happy with but that, to anybody else, looks nothing like an orange.
Thus, in order to compensate for our deficits and function on a daily basis, people with Asperger’s Syndrome have to expend huge amounts of mental energy. What comes naturally to so many neurotypical people, we have to consciously process, and like a computer, we only have a limited amount of processing power.
This is why socialising is so exhausting. Interpreting what people are saying, how they’re saying it, what they mean, in what way they mean it, what you should say, what you shouldn’t say, when you should say it, is your voice too loud, too quiet, do they understand you, are you standing too close, are you making too much eye-contact or not enough, what’s the relationship between this person and that person, how are you coming across, and what does it all mean, while trying not to get distracted by music, other conversations, traffic noise, light bulbs, their deodorant, the way the sun is reflecting off someone’s forehead, and the fact their DVD collection isn’t alphabetized, is excruciating. It’s no wonder we so often become overwhelmed and suffer burnout. And why we need extended down time to recover.
So how does this relate to being a dad?
I liken it to the old people’s home I used to work in. Those upstairs were frail and grumpy, but were compos mentis and had simple needs – toileting, bathing, dressing, eating and sleeping. After working seventeen straight hours without a break, I’d be physically exhausted but mentally quite alert. Other than latent old-fashioned racism (‘That dark girl has stolen my pearls.’ ‘You’re wearing them, Gladys.’), it was a breeze.
Downstairs, behind code-locked doors, were the Alzheimer’s and dementia residents. Most of them were able-bodied, and so working with them wasn’t nearly as physically tiring as working upstairs. Mentally, however, it was like being hit with a crowbar.
You’d have a suddenly-naked ninety-year-old man charge at you with his willy in his hand, turn around to find a woman trying to remove non-existent make-up with cutlery. You’d try to console a former naval officer sobbing over a cat that had been dead for fifty years, before bathing a woman who screamed at the top of her lungs all day long. You ever tried shaving a man who’s spitting at you? Fighting off the advances of a woman who thinks you’re her long lost lover back from the dead?
I’d go home after a shift downstairs and my back wouldn’t ache, my feet wouldn’t hurt, and I’d be capable of running a marathon, but good golly, my brain would be mush. Trying to process the assault of noise, colour, emotion, attempts at communication – it left me useless for the whole night and into the next day.
And that’s how it is with Izzie.
When she was little, it was physically demanding but mentally easy – she spent half the time asleep and the rest of it feeding or pooping. Her needs were simple, her sounds were few and explicable, it was easy to know what she wanted and to cater to that. It was like she was an extension of myself and I loved it, because I was good at it and it worked.
Now, however, she has morphed into a person, entire of herself and completely separate from me. Since my problems revolve around interactivity, having a suddenly very interactive child is something I’m struggling with. She’s become incredibly complicated. It’s like I’m behind those code-locked doors again, downstairs in the dark.
These days, Izzie is in near-constant motion from six in the morning till gone seven at night. Instead of cuddles and sleep, she’s climbing on the furniture, chasing after the dog, throwing tantrums if you take the TV remote off her, fighting you when you change her nappy. Mealtimes are complicated affairs where you try to get enough nutrients and fluid into her while getting it spat and flung back into your face. You can’t take your eyes off her for thirty seconds or she’s unplugging the telephone or ripping the pages out of your favourite book. And no matter what you do, it seems to be wrong.
She’s learning at an astronomical rate, discovering new textures, tastes, sounds, skills, vocalizations, facial expressions. She laughs, she shouts, she reaches for you, she pulls your hair, and you spend all day right there with her, trying to keep up. And every new texture, taste, sound, skill, vocalization and facial expression, I’m trying to interpret it, trying to process it, trying not to get left behind. Am I doing it right, how do I keep her safe, what does she want, what does she need, why’s she doing that, is this right, what should I do, has she eaten enough, I’ve got to catch her if she falls, what rules should I make for this, and that, and the other, and what does it all mean?
And that’s before we factor in visits from family and friends, health visitors, nursery nurses, social workers, care coordinators and support workers, and the everyday trivia of shopping, cooking, cleaning, writing, working, which create a whole bunch of processing issues of their own.
Mentally, I’m mush.
This interactive stage, before babies can express themselves but after they have a need to do so, is by far the hardest part of parenting I’ve experienced. Lizzie is loving it, but I can’t help counting down the hours until Izzie goes to bed, and that’s making me feel like a crap dad, especially as I keep being told that this is meant to be such an amazing period. By the time I’ve got Izzie down, I’m not fit for anything in the evening but staring numbly into space, my brain trying to make oranges out of everything I’ve seen and done. Throw in a touch of SAD and I can feel the Black Dog circling ever closer to me again.
I have an adorable daughter and I seem to be doing a good job of raising her. Physically, it’s easier than ever. But oh my gosh I’m finding it mentally exhausting at the moment.
Perhaps this is just something I’ll have to get used to.