AS, Babies and Multitasking

When you have AS, you don’t process information the same as other people. We have rigid, systematic ways of thinking that give us excellent rote memory, but that hinder our ability to combine different pieces of data to create a larger whole or easily shift from one thought sequence to another. Sounds complex? Let me explain.

If you imagine each sensory input, thought or piece of knowledge as a sheet of paper, and the autistic brain as a giant filing cabinet, it goes some way to understanding how we operate. Every sheet of paper needs to be analysed, categorised, related to other sheets of paper and then filed in its relevant folder in the relevant drawer before we are done with it. It seems great in theory, but in practice? Bloody exhausting.

Processing information in this manner takes both time and huge expenditure of mental energy. Sometimes people with AS can seem a little slow when you’re talking to them, but they’re not – they’re just busily interpreting all those little nuances of social interaction that neurotypicals do automatically. Sometimes you can say something to an Aspie, and it’ll be minutes, hours or even days before they get back to you, because that’s how long it can take to work through everything you’ve said, figure out what it all means, and create an appropriate response. And if you give me a list of instructions, you can bet your bottom dollar that I’ll focus so intently on the first step to make sure I understand it that I’ll switch off from everything you say thereafter.

This is because we can only think about one thing at a time. With a mind like a filing cabinet, every detail is separated and stored in an individual folder. If we’re thinking in a certain way about a certain thing – say, file Z284 in Drawer C (the book we’re reading) – then how on earth can we suddenly start thinking about something else – file B827 in Drawer F (the gas bill), for example? So we focus on the first file, and the others cease to exist – at least until they come knocking on the door.

And when we try to do too many things at once, or switch from thinking about one thing to thinking about another, we often screw up our whole filing system. We open a drawer, take out a file, study the page; then we open another drawer, take out another file, look at it; open a third; and before we know it, all the drawers are open, we’ve got files all over the place, we can’t work out what goes where and can’t put anything away or let anything go, our thoughts spiral round and round and, unless we manage to stop this process, we go into what is affectionately called an ‘autistic meltdown’. That’s what it’s like having a filing cabinet for a brain (and that’s without mentioning how, because our thoughts are separated into different files, we focus on the details and miss the ‘bigger picture’ – we see trees instead of forests – but that is by the by).

Anyway, ‘what does all of this have to do with babies?’ I hear you ask. Simple. My house is a tip.

Actually, that’s putting it mildly. My house is, at current, a shithole. I know this because both of Lizzie’s parents have separately described it as a ‘disgrace’ and said that they would be embarrassed to have people over. Ouch!

To be fair, I don’t really notice the mess most of the time. We’ve been blaming it on having a baby – how can anyone have a baby and a tidy house? – but I’ve stumbled unannounced into two houses in the past fortnight who have kids the same age as Izzie, and their houses are freaking immaculate: toys put away, the sideboards clear of stained coffee mugs, no dishes in the sink, clothes hung up instead of strewn over the backs of chairs, everything in its place. Where in God’s name do they find the time or the energy to do that? What makes us so different?

The answer, which has been eluding me for so long, is horrifyingly obvious: they don’t have autism; we do.

To have a tidy house and a baby, you have to be able to multitask. You have to be able to keep one eye, or part of your brain, on the baby and the other on the washing, the ironing, the cleaning. And that’s not something I’m capable of doing.

When I look after the baby, I look after the baby. That’s my job, that’s my focus, and that’s what I do. When I tidy, I tidy. I can’t do both at the same time. So I leave the tidying to the evening, after Izzie’s gone to bed, by which time I’m exhausted and tend to flop down on the sofa or, to be entirely honest, obsess over random things like making lists of all the WWE wrestlers from my teens who are now dead, or researching the million-and-one rebuttals to 9/11 conspiracy theories, or writing 10,000 word treatises on why Jack the Ripper was not Arthur Sickert (take that, Patricia Cornwell!) – you know, useful, productive things like that.

Raising a baby as a person with autism is surprisingly mentally taxing. There is so much information to process, so many sensory inputs and new experiences to file away, my brain is constantly distracted. I used to go to bed between midnight and two every night, getting around six hours sleep – now, I’m lucky to be able to function past ten. That’s how draining it is.

I’m not entirely sure how to rectify this situation. I mean, the house is mostly clean – it gets hoovered, the sides are anti-bacced and we’re still sterilising the baby’s bottles; bleach down the toilets, dog poo picked up, nappy bin emptied regularly, rubbish put out – it’s just got stuff everywhere. And until I can figure out a way of thinking about two things at once without tying my thoughts into knots, that’s the way it’s going to remain.

But it’s all worth it to see that smile every day!

AS, Parenting and Mental Exhaustion

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.