What do you say in response to THAT!?

What should you say when you’ve just sprayed blood into someone’s face?

As an autistic guy, I have a number of rehearsed responses to virtually every question and situation. I don’t think I’m alone in that – much of society have pre-programmed sets of words they drop into sentences to convey meaning without having to engage their brains and thus slow down the communication.

When we meet a casual acquaintance, for example, we don’t choose every word to create a sentence – we select a block of meaning, as from a drop-down menu, and send it to the mouth:

‘Hi, how’re you?’

The unthinking response is invariably, ‘Fine, thanks, how’re you?’

We do this all the time. It’s the reason idioms are so divorced from their literal meanings – catch you later, how’s tricks, I’ll take a rain check, a piece of cake, shitting bricks. Instead of thinking of each individual word, we select the meaning we want, and the particular register (formal, informal), and our brains arrange the chunks and make the sentences for us.

If we didn’t operate like this, it would take too long to say anything and too long to interpret what other people are saying. It’s as though society has consented to ignore the individual words and ascribe meaning to blocks of words – they’ve agreed that ‘once in a blue moon’ means ‘rarely’ and ‘over the moon’ means ‘pleased’, for example.

This can be a good thing for those of us on the spectrum, as it means we can fake empathy and not have to struggle to figure out what someone’s thinking or feeling. So long as we learn the rules – which can admittedly be difficult in itself – we can fit in.

For example, I’ve had to learn that when people ask, ‘How are you?’ it’s merely a means of facilitating conversation and not an earnest enquiry after your health, so you’re not meant to tell the truth (for a time, I answered with, ‘Entering the inner sanctum of the seventh circle of Hell, and you?’ just to see the reactions).

Where a context-specific response is required and I can’t tell whether a comment is serious or sarcastic (‘Lovely day, isn’t it?’) I normally reply with ‘Indeed’ or ‘Absolutely’ so that it fits both. Unless I’m tired and slip into Aspie mode, where I’ll take everything literally, overthink everything I say and consequently fail to communicate, I can normally mask my difficulties.

However, there are three situations I keep encountering that I’ve never figured out how to deal with.

There’s a lady at the school gate who keeps slipping into small talk that her eldest daughter died as a toddler. Every time she does it, it’s so matter-of-fact that it knocks me off track.

‘How was your Christmas?’

‘It was really good. We lost a child at Christmas, so we make the most of it every year. How was yours?’

‘Er, er, yeah, fine,’ but all I can think is, Should I be saying, ‘oh dear’, or ‘that’s terrible’, or ‘poor you’, or ‘what happened’?

Another difficulty is when old people look at you, groan wearily, and say, ‘Don’t get old.’ Since I live in a village full of elderly people, this happens more often than you’d think. How the hell are you meant to respond to that?

‘I won’t,’ or ‘I’m not planning to,’ sounds like you’re going to kill yourself. Saying, ‘It happens to us all,’ is a bit patronising because they’re old and in pain and I’m not, as is minimising their experience with, ‘It can’t be that bad’ or ‘It could be worse’. And giving some philosophical statement like, ‘Youth is wasted on the young,’ or ‘Any day there’s air in your lungs is a good day,’ is a little too in-depth when you’re standing in a queue at the local shop.

But the worst, the absolute worst, is when I spray people with blood.

I’ve mentioned before that I donate platelets. The way they do it is to put a blood-pressure cuff on your upper arm, inflate it, then stick a needle in your arm. Despite having normal blood pressure, for some reason I have a tendency to squirt. It’s like popping a balloon – the second the needle touches my arm, boom! Blood spattered all over their hands.

So I warn them every time. And every time they’re like, ‘Ah, I’m better than the other nurses, it won’t happen to me,’ and every time – pop – I get them.

There’s something incredibly intimate about blood, so it makes me feel embarrassed and kind of dirty when I spray it over some poor girl’s hand, or neck, or face. The girl yesterday got it all over her bare hand and up her arm, and was clearly horrified, and in those situations I have no idea what to say.

I muttered, ‘Sorry,’ but that seems on the one hand inadequate (I’ve just squirted my bodily fluids over her, after all) and on the other pointless (I can’t exactly control it, can I?). I once tried, ‘See? Told you so,’ but decided that’s rubbing salt in the wound. Likewise, ‘Gotcha!’ makes me seem like a sicko who enjoys the sight of his blood on someone’s cheek.

So I just sit there uncomfortably and squirm. Every time.

If anybody has some advice for how I can respond, I’m all ears!

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.

Sense of Humour Bypass

The hardest thing about looking after a baby is not a single, groundbreaking event like a giant poo or a sudden explosive scream just as you’re settling down to dinner. It’s not a night without once closing your eyes or an entire day of crying. It’s subtler than that, the accumulation of lots of little events, weeks of broken sleep, and the general running down of your energy reserves, but when it comes, it’s no less impactive than a Mike Tyson slap round the face.

One day you wake up and find that things just aren’t funny anymore.

At five this morning I came downstairs with the baby to discover the dog had, in her infinite generosity, left me some chocolatey gifts all over the kitchen. And not crisp, tempered chocolates, but some kind of squidgy, runny mousse that has somehow stained the lino black as though we’ve spilt oil on the floor. Normally I’d think, ‘Wow, what a great anecdote to add to my ever-growing pile of gross-out fun!’ Instead, I cleaned it up with about half a roll of toilet paper, disinfected my hands, and set about feeding Izzie.

How dull.

I think the funk set in yesterday. I’m particularly good at what we in the autism community call ‘masking’. This is using your intellect to compensate for your condition and thereby mask your symptoms. It was the reason it took until I was 28 to receive a diagnosis. It’s not being dishonest, simply that we’ve learnt to hide the more ‘out there’ aspects of our autism in an attempt to fit in.

Unfortunately, the more tired I become, the less capable I am of consciously suppressing my autistic behaviours. Thus, if I’m not paying really close attention, I start taking everything literally; I lose the ability to understand when someone is joking; my social filter stops working; I start being pedantic and pernickety; I become paranoid because I can’t figure out why people are behaving the way they are; my mind starts to trip over the rapid flow of thoughts; and I act out my obsessive tendencies.

Yesterday we went out for coffee with some family and family friends. Because I pay close attention to every little detail in a social interaction to know when to speak, what to talk about, I don’t miss a trick, so I noticed that every time I spoke, two of the people around the table looked at one another, made a face, and laughed. I watched them while other people spoke, and nothing. I spoke, same response – they looked at one another, made a face, and laughed.

Thinking I might be paranoid, I went to the toilet, cleared my head, returned and tried again. Same thing. They were mocking me.

I couldn’t figure out what I was doing wrong. Was I speaking too loud? Off topic? In an odd register? Was I saying things inappropriate to the context? Sure, I was discussing how Izzie seems to have a hard nugget of poo in her rectum which backs up a sausage and a tin of mushy peas, but they had asked how she was doing and nobody was eating at the time. Then I was mentioning my orthodontic treatment as a teenager, how they wanted to break my jaw, bring it forward and insert a false chin to line up my teeth, but instead I opted for an agonising headbrace. I’m not sure what’s so amusing about that. One of them said they kept all of their child’s teeth and had them in a box – I said they should make them into a bracelet, but that was considered horrible. Well, you’re the one collecting teeth like a kleptomaniac tooth fairy!

Later, I had a row with Lizzie. As she is also autistic, she can similarly struggle to see things from another’s perspective i.e. mine. I didn’t feel she was giving me my due for doing the nights and allowing her to get a full night’s sleep, every night. In fact, I turned very much into a woman. ‘You just don’t understand how hard it is,’ I said in my whiniest voice. ‘You go out with your friends and come home and just watch TV. You don’t pay me any attention anymore. I feel like a single father. I just want a little consideration, and wah, wah, self-pitying wah.’

In the ensuing argument she grew defensive and said some things she shouldn’t have, and which I should have known not to take seriously, but I did. And all I could think during the argument was, ‘Why are you saying nothink? There isn’t a k in it, the word is nothing. And stop saying miwk, it’s milk. This Estuary English is entirely inappropriate for someone born and raised in Dorset!’

We made up, but when she went out in the evening with the baby, instead of having a rest I spent three hours obsessively looking up Spanish swear words on the internet. They mostly cast aspersions on the sexual behaviour of one’s mother. But I can think of better things I could have been doing instead.

So here we stand, or rather sit, with Izzie fixing me with her creepy unblinking gaze as she has done the past few hours. If she’d only cry, I’d be able to deal with it: why the hell is she just looking at me?

I need to regain my sense of humour. You lose that, next comes misery, self-harm and suicide. Or, at the very least, socks with sandals and an interest in snooker. And I need to find it fast: nobody can survive a baby without it.