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!

Five Months of Autistic Parenting, Part 1

Five months ago I started this blog with the question: what happens when a guy and a girl with Asperger’s Syndrome have a baby? I can answer that very simply: we have a gosh-darned gorgeous daughter. Beautiful, inquisitive, intelligent, happy and healthy. And it’s not just me that says that – health visitors, midwives, nurses, doctors, childcare specialists, social workers and swimming teachers all agree, and they have no reason to suck up to me so it must be true. Yay.

But of course, that’s only a fraction of the answer. How has our autism affected our parenting thus far? How has it affected our relationship? How have we compensated for or overcome our foibles and idiosyncrasies? What have we learned? These are the real meat of the answer, and I’ll do my best to cook them for you.

In this post, I’ll cover the small, humorous parts of autistic parenting. The next post will detail the larger, more serious problems of parenting with Asperger’s. So hang on in there if that’s what you’re looking for.

Firstly, I have to mention the mobile over Izzie’s cot because it drives me freaking insane. Why? Because you have to turn the mechanism ten-and-a-half times to wind it up fully. What kind of sadist designed that? Why can’t it be ten? Why ten-and-a-half? I’d even accept it if it went up to eleven (insert This Is Spinal Tap reference here). But leaving it with a half is plain belligerence. It’s practically warmongering. (For future designers, I would accept fifteen as well – multiples of five are always good).

This same sadist also made it run out of steam one solitary note from the end of its repetitive tune. Yes, one note. I lie awake listening to that simple tune on the baby monitor, round and round, knowing that soon it’ll stop short and leave me with a horrible sense of incompleteness. It’s like watching a firework shoot up into the sky and then splutter out without so much as a ‘fzzzzt‘.

The play mat bugs me too. All the tunes it plays are almost nursery rhymes, but not quite. Whether for copyright reasons or simple hatred of children, they’ve changed the last line of each one so you’re singing along and suddenly – boom – you can’t finish it! So Incy Wincy Spider never gets to climb up the spout again, the little boy who lives down the drain never gets his bag of black wool, and Frere Jacques doesn’t end with a ding, dang, dong. So annoying.

The monitor is a pain in the ass too. The first sound the baby makes switches it on, and then you’re treated to ten seconds of the microphone trying to pick up whatever white noise it can find. So, if the baby coughs, you don’t hear her cough – you hear the monitor come on, ten seconds of humming, buzzing static, and then it switches off again. She coughs again, the microphone comes back on. So you lie in bed listening to the monitor switching on and off without once hearing any baby noises. It drives me crazy.

But infinitely worse is when you can hear noise through it, specifically screaming. Izzie screams so loud, I imagine the neighbours wake up thinking, ‘Whose bloody baby is that?’ And when I say ‘neighbours’, I mean ‘the people in the next village’. It’s bad because I can hear Izzie screaming through the wall and I can hear her screaming in my ear through the monitor, so I get it in stereo.

And if that wasn’t bad enough, there’s a slight lag between the microphone picking up the sound and the speaker relaying it, so the screams are slightly out of sync. If you want to make a noise so unholy it could summon the devil, come to my bedroom around eight pm. Bring cake.

In truth, I’m not sure whether it’s my autism that makes these things bug me or if it would bug every parent. Certainly, my autism makes me pedantic and pernickety – I like completion, efficiency, accuracy, things working as they should and doing so logically – and whoever designs these things for babies seems to enjoy torturing parents like me. Grrrr.

Probably more directly related to autism is my dislike of slimy stuff. Autism is often accompanied by sensory issues, including a strong liking or disliking of particular textures, temperatures, smells, sights and sounds. One Easter at Sunday School when I was about eight we had to do egg-blowing, and I absolutely hated it – disgusting, squidgy raw egg dripping out the hole in the bottom of the shell. Yuck. The teacher lady, knowing I didn’t like mud, grass stains, getting dirty, told me I wasn’t like other boys – in hindsight she might have been suggesting I was gay. But she was right – I cannot stand slimy stuff.

Which means changing Izzie’s poopy nappies, especially when the crap has spilled out and soaked into her vest and top and trousers and I have to slip it off over her head and then there’s faeces in her hair, is particularly difficult. And when I get it on my hands I run to the bathroom screaming to wash my skin in scalding water with antibacterial soap and a wire brush.

Worse, though, is feeding the baby her solids. I’m not sure why they’re referred to as solids because, as everybody knows, baby food is sludge. Watery, slimy, smelly sludge that stains everything it comes into contact with.

Since babies learn about the world by watching our reactions, I’ve been told we have to act as though their food tastes lovely and there’s nothing we’d like to be doing more than feeding them this gunk, or else it might put them off. Now imagine you’re someone who is horrified by the feeling of sludge and who squeals if he gets mud on his Wellington boots. Yeah.

I spoon that gloopy, dripping, phlegm-like goo into Izzie’s mouth, force a smile onto my mouth as she dribbles it onto her hands then smears it over her face, try not to react as she grabs my forearm with her cold, slimy fingers and rubs that delightful substance into my skin. Mealtimes have become my least favourite activity by far – I’d rather clean out the cat litter, and that’s saying something.

And this fakery of enjoyment leads me onto the final and most profound observation on autistic parenting in this first part of the post. As someone with Asperger’s Syndrome, my life is one giant performance. My body language, facial expressions and tone of voice are not natural, but the result of study and conscious manipulation. I project confidence, contentment and cheerfulness when in truth I am filled with hidden insecurities and neuroses, discontentment and confusion, and I spend my life battling against my thoughts with a violence that nobody could ever guess at. How does this relate to parenting?

Since our babies look to us to learn how they’re supposed to react to new situations – should they be afraid, relaxed, excited, upset? – we have to act as though we know what we’re doing and everything’s fine and dandy. Well, having had a lifetime of practice hiding (masking) my problems, I’m an expert at making Izzie feel safe and secure. I might be terrified of setting foot outside my own front door, but Izzie will never see that, so she won’t grow up infected by my fear of the outside world.

So my autism is really a double-edged sword. Without it, I probably wouldn’t be a reclusive, hysterical pillock; with it, I’m able to pretend that I’m not a reclusive, hysterical pillock. What kind of parent does this make me?

The best that I can be.

Colic, Part 2

Colic is one of the hardest things I’ve ever had to deal with, and if I was twenty and not the thirty-five that I now am, I’m not sure I’d have the tools to cope with it. Although ‘coping’ is a relative term: as I said in my last post, all you can do is survive.

When you’re not experiencing it, colic is a very easy thing to dismiss. ‘It’s nothing to worry about, just a bit of colic,’ is what you hear from health professionals, while people whose kids are grown and gone reassure you that it passes, so don’t let it colour your perceptions of parenting.

Nobody should ever use the word ‘just’ alongside ‘colic’. It’s like saying falling down a flight of stairs is ‘just a little tumble’. And the fact that there’s a light at the end of the tunnel is no practical help when you’re standing at the coal face in the dark. This might sound melodramatic, and if I weren’t the one going through it, I might roll my eyes and say, ‘Oh get on with it, nobody ever said it’d be easy.’ But the unlikely truth is that an eleven pound baby that can’t verbalise, move, or consciously plan her behaviour can dish out punishment like a professional.

A colicky baby doesn’t cry. Crying is dainty, purposeful and reasonable. A colicky baby screams an angry, pain-filled shriek of accusation and exasperation. The volume, tone and pitch seem perfectly calculated to inflict pain, set your teeth on edge, and rattle your nerves. And the duration – hour after hour after hour – saps your strength and your ability to think clearly. You can’t eat, talk, go to the toilet, read, watch TV, listen to music, or in any way relax because you’re subjected to a continuous assault on the senses.

And assault is what it is. While Asperger’s Syndrome is often portrayed as a social condition, many of us are afflicted with sensory issues from extreme sensitivity to surprising insensitivity. Lizzie has no sense of smell, very little sense of taste, and while she is oversensitive to touch, she has an incredibly high tolerance of pain. But like me, she has hypersensitive hearing, able to hear whispered conversations from several rooms away. This means that when Izzie screams, it causes us physical pain and a rush of adrenalin that befuddles us even further.

Worse are the emotions it stirs up. People liken those of us with Asperger’s to Mr. Spock from Star Trek – logical, unemotional beings who live in our heads, not our hearts – and they’re right, but not in the way that they think. Because the Vulcans are not unemotional creatures, but are in fact so emotional that they’ve had to come up with a way to control and overcome their passions. I think that far from being unemotional, people with AS feel emotions too much, and so force them down and try to operate at the level of intellect. This means we don’t understand our emotions, don’t know how to control then, so do our best to keep them at bay.

Colic unlocks them.

Lizzie can cope with a crying baby for around three minutes before it becomes too much. She feels overwhelmed, afraid, guilty; she gets upset. Why is Izzie crying? Why can’t I stop it? I’m a bad mother; I can’t deal with this; I’m not good enough. Lizzie’s heart pounds, her body goes into defence mode, and she hands the baby back to me and leaves the room. It damages her ability to bond with the baby and her involvement in Izzie’s care. I catch her crying when she’s by herself. It means we’re floating around a diagnosis of something with the initials PND.

This isn’t exclusive to parents with Asperger’s, of course. Colic is well known to heighten stress and cause anxiety, postnatal depression, self-esteem issues and relationship difficulties. You feel helpless. You feel frustrated by your inability to do anything to help. But you know it’s not the baby’s fault, so you take it out on each other.

As a couple, during a bout of colic you communicate by shouted niggles and pointed digs, because you’re both stressed and tired and you can’t hear one another or have anything like a reasonable conversation. You start to think about how unfair it is that the other person is eating dinner while yours is getting cold, or that they’re having a nice relaxing bath while you’re gritting your teeth against a tornado. It’s no wonder it puts such a strain on relationships. By the time it’s finished, it’s so late that you collapse into bed and the last thing you want to be is an attentive partner. Cuddle? I just want to be left alone.

Given Lizzie can only cope for around three minutes, when Izzie cries for a solid eight hours, I bear the brunt for seven hours and fifty-seven consecutive minutes. Her screams make such an impact on my mind that I even hear phantom baby cries when she’s fast asleep. It’s lonely trying to console a colicky baby, a nightmarish fight for survival that breaks your heart in two.

But survive I must and survive I do, even if I despair sometimes, even if I’m driven to tears, because I’m a dad, and that’s what dads do. The true measure of a person is not how they cope when everything’s going well, but what they do when it’s all falling apart. I knew going in that I’d have to walk through hell for my daughter, and it’s a price I’m willing to pay.

One day it’ll be over and I can wear my scars with pride. Until then, I just have to keep fighting, and remember what it is I’m fighting for.

Yogi Bear

This. Always this.