Am I missing something?

Since my wife and I both have autism, sometimes we misunderstand each other; sometimes we get the wrong end of the stick; and sometimes we are simply incapable of understanding the other’s point of view.

I live with my wife; I have kids with her; I spend practically every waking moment with her; but after the conversation I just had with her, I’m pretty sure she lives in a parallel dimension where up is down and black is white, or I do. I have no comprehension of what just happened.

She rushed into the lounge, her face aglow with excitement. ‘I’ve just realised something,’ she said.

‘Oh, yes?’ I replied, eager to hear what it was.

‘You know the alphabet? If you count seven letters above A, you get H.’

‘Yes.’

‘And if you count seven letters above B, you get I.’

‘Uh-huh.’

‘Well, if you count seven letters above C, you get J.’

I waited for more, but no more came. ‘And?’

‘Well isn’t that amazing?’ she said.

‘Isn’t what amazing?’

‘That if you count seven letters up from A, B and C, you get H, I and J.’

I frowned. ‘Still not seeing the significance.’

Her smile fading, as though talking to an idiot, she said, ‘Seven letters above A is H.’

‘Yeah, I get that.’

‘And seven letters above B is I.’

‘Yeah, and seven letters above C is J. So what?’

She sighed. ‘You’re not getting this.’

‘No, I’m not. Seven letters above A, B and C are H, I and J. Why is that significant?’

‘Look,’ she said, starting to lose her patience. ‘If you put the numbers A to G in a line, and then on the next line put H to N, all the letters on the second line will be seven in front of the letter above.’

‘Yeah.’

‘Well, that’s amazing, isn’t it? I just figured that out.’

‘You figured what out?’

‘That H, I and J are seven letters ahead of A, B and C.’

‘I’m still not understanding why that’s significant.’

‘Because, like, mathematicians could make algebraic equations out of it.’

By now, my frown was so deep my eyebrows had merged with my moustache, and she got even more annoyed.

‘What?’ she said. ‘You knew that seven letters in front of A, B and C are H, I and J, did you?’

‘Yes. I don’t get why this is news to you.’

‘Because H, I and J -‘

‘I know,’ I said. ‘They’re seven letters in front of A, B and C, but so what? Why seven? What’s the significance? Do they spell something out? Do they mean anything?’

‘No, but seven letters ahead of A, B and C are H, I and J.’

‘So what? Three letters in front of A, B and C are D, E and F. Four letters ahead are E, F and G. What’s interesting about that? What the hell are you talking about?’

She was very cross by now. ‘I’m talking about how, if you put the letters A to G in a line -‘

‘I know! The second line are all seven ahead! So what? Who cares?’

‘You’re just not getting it!’ she cried.

‘No, I’m not, because you’re not explaining it, you’re just repeating it!’ I cried back. ‘Why seven? If you make a line of three letters, the next row will all be three ahead; four letters, they’ll all be four ahead. Shit, we don’t even need letters. Three in front of 1 is 4; three in front of 2 is 5. Look at your phone – every number on the second row is three ahead of the first row. Who cares? Why exactly does it matter!?!’

‘Because if you choose a letter and go seven ahead, and pick the next letter and go seven ahead of that, they’re next to each other!’

‘Of course they’re bloody next to each other! If you go ahead any number of letters, from one to twenty-four, they’ll be next to each other! Twenty-four above A is Y, twenty-four above B is Z. So what?’

‘You just don’t want to admit it’s amazing because you didn’t come up with it.’

‘Come up with what? That some letters in the alphabet are ahead of other letters in the alphabet?’

‘No, that seven letters above A, B and C are H, I and J.’

‘But that’s not – that doesn’t mean anything.’

‘Not to you. I think it’s quite a profound idea.’

By this point, I wanted to rip off my own arm and beat her over the head with it. ‘That’s not profound. It’s not even an idea. That’s saying what you see. The sky is blue. Who cares? That’s half an idea. You need to say, the sky is blue and therefore. You have to provide significance. Meaning. Like, neo-Nazi organisations often put 18 in their name because 1 and 8 are the letters A and H, which stand for Adolf Hitler. Or, it’s called the alphabet because the first two letters are alpha and beta. That’s interesting.’

‘Well, I’m still pleased with myself for coming up with it.’

‘Well, you go and be pleased, then. I’m going to try and figure out what planet you’re on, because it definitely isn’t mine.’

And, try as I might, I still can’t figure out what the hell she was on about.

Am I missing something?

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!

Mondegreens, urology, and bringing sexy back: Autism and Language

As the father to a nineteen-month old daughter, I’m deep in the throes of teaching her to communicate. For one thing, our nappy-changing conversations have become a little one-sided and repetitive for my tastes, and for another, it would make it a whole lot easier working out what she wants, what she doesn’t want, and what she’s getting stroppy about if she could just say, ‘Dad, I want to eat the cat’s breakfast instead of this slop,’ or, ‘But why can’t I put this screwdriver into that plug socket?’

Unfortunately, as a person with autism, a condition that is pretty much characterised by difficulties with communication, there are a number of potential difficulties ahead. As my wife also has autism, and a different set of communication problems, the job becomes even more fun. Not that we don’t know how to talk or communicate, of course – I wouldn’t be able to write this if that were the case – but there are some oddities in how we use and understand language.

A case in point is onomatopoeia. We are teaching Izzie animal sounds – moo, baa, eeyore, and suchlike. Like a lot of people with autism, my wife Lizzie struggles to alter the tone and pitch of her voice to express emotion or replicate sounds. On the musical scale, she can do doh, re, mi and fa, but that’s her limit, so she has a very narrow vocal range and thus a somewhat monotonous delivery. She also has limited volume control, her voice being either quiet, loud or shouting. This means that no matter what animal she’s doing an impression of, it tends to sound like a drunk guy being kicked in the nuts. Which works when it’s a donkey braying. Not so much the cat’s miaow. She’s very good at simply reading the words.

My problem with onomatopoeia is the opposite. I think my animal impressions are rather good, and my voice ranges from a passable bass right up to a passable falsetto, but I cannot read a ‘sound’ word as a word. When I was five I had to read out in class from Funny Bones. There’s a page where a mouse was saying ‘squeak, squeak, squeak,’ and I read it in a high-pitched, squeaky voice that made everyone including the teacher laugh. The truth was, I couldn’t read it any other way, and I still can’t. For this or with any other onomatopoeia.

It’s embarrassing. I can’t say my chair is squeaking without sounding like a pubescent boy on the final word. I can’t describe a loud BANG! without making everyone jump and I can’t say the word whisper in anything other than a whisper.

It’s wrecking my ability to sing Old MacDonald because I can’t make ‘moo moo here’ or ‘baa baa there’ fit the rhythm, since lowing is moooo and bleating is ba-a-a. And if you’re at a parent-toddler group and you can’t even manage to sing Old MacDonald, you’re definitely not seen as a doyen of the literati.

Another difficulty is mishearing sounds, or rather, hearing them properly but failing to connect them in the right way. For many years at school, I shared a class with a girl called Antal Mage. I thought she had the coolest name ever, like a heroine from a fantasy novel. Then came the disappointing day I was handing out exercise books and discovered her name was Anne Talmage. Not nearly so exciting, and no wonder she used to look at me funny every time I said, ‘Morning Antal.’

I often mishear songs too. For twenty years, I thought the chorus of the Radiohead song ‘Creep’ was, ‘I’m a creep, I’m a widow’. How sad, I thought – people should be nicer to the bereaved. Then I discovered it’s actually ‘weirdo’. Changes it entirely.

For the past fifteen I also thought ‘Can’t Fight the Moonlight’ was about a mum trying to hide her dalliance from her offspring – ‘You can try to resist, got to hide from my kids…’ Although to be fair, I seem to mix up ‘kids’ and ‘kiss’ quite a lot, since I thought Paloma Faith’s ‘Only Love Can Hurt Like This’ contained the line, ‘Must have been my deadbeat kids’ (it’s ‘deadly kiss’, FYI).

Of course, mishearing song lyrics is not exclusive to people with autism. There’s even a word for it – mondegreen. But even when I hear them right, I can still struggle to understand the meaning.

For the past ten years, I thought Justin Timberlake’s ‘SexyBack’, with the chorus ‘I’m bringing sexy back’, was the oddest song I’d ever heard. I mean, backs just aren’t sexy. It’s not like anyone ever said, ‘Put your boobs away, I want to see your back, yo.’ And I always thought it was a bit derogatory talking about people in terms of their physical attributes.

‘Who you bringing to the party, dog?’

‘I’m bringing Hairy Upper Lip, how bout you?’

‘I got a date with Freckly Belly. Hey Justin, you got a date for the party?’

‘Yeah, I’m bringing Sexy Back.’

I get it now.

My misinterpretations aren’t just limited to songs. I went on a coach tour a few years ago, and one stop was the museum of the Berlin Airlift. I looked around this museum for an hour, taking in the stories of the Soviet blockade, the fact they had to fly in supplies around the clock, gazed at the model aircraft, the photographs of airfields, the medals awarded to the pilots, and then I called over the guide and said, ‘I can see all the planes, and stuff, but where’s the Berlin Airlift?’

He looked at me blankly before gesturing outwards with his arms. ‘It is all around us,’ he said. ‘This is the museum of the Berlin Airlift.’

‘Right,’ I said, confused. I’d seen some stairs. No lifts, though. Nothing that would fit the grandiose title of The Berlin Airlift. It wasn’t even a very tall building. Why would you install a pneumatic elevator in such a structure? And why make a museum about it and then fill it with aeroplane models? Made no sense to me whatsoever.

I didn’t get it until after we’d left.

Just like last year when my parents asked me to stay at their place one day because they were having some tablets delivered. Mid-morning, a delivery man turned up with two iPads. I took them and waited, and waited, and waited, and nobody else turned up. My folks eventually called and said, ‘Have our tablets arrived?’ and I said, ‘No, I’ve waited in all day, and all that’s been delivered are a couple of iPads. Just how important is this medicine you’ve ordered?’

Misinterpreting the intended meaning behind single words is often humorous, but given that those of us with autism often take things literally, it can sometimes get serious. Like when I was seven and my grandfather told me to jump out of the bath – I jumped, two feet together, and almost killed the both of us. Or when my dad asked me to chuck him his toolkit, so I literally chucked his toolkit at him (CRASH! WALLOP! Onomatopoeia!). Or that time somebody said, ‘Throw that bottle in the bin,’ so I threw it, and showered us both in broken glass. You have to be careful how you phrase your requests to me!

Normally, if I concentrate, I can overcome this problem and detect the wider nuance or significance of a request – what they have asked me to do versus what they probably want me to do. If I’m tired or distracted, however, like, say, I’m the parent of a toddler perhaps, I can go full Aspie. And when I do that, it can really get me into trouble.

The other week my wife asked me to check in my safe to see if her birth certificate was in there. This I duly did, and it wasn’t, and I told her it wasn’t. An hour later I noticed her pulling out drawers and throwing things out of cupboards in what I shall politely call a highly agitated state.

‘What are you doing?’ I asked.

‘I can’t find my birth certificate!’ she cried.

‘Oh, that’s in my filing cabinet,’ I replied.

She looked at me, daggers for eyes.

‘What?’ I asked.

‘You knew where my birth certificate was all this time?’

‘Yes, that’s where I keep them,’ I replied.

‘Well why the hell didn’t you tell me that an hour ago when I asked you to look in your safe for it?!’

‘Because you said to look and see if it was in my safe. And I did, and it wasn’t. You didn’t ask me if I knew where it was.’

I understand why she got so upset (though I’m not sure threatening to divorce me was warranted), and in hindsight, yeah, I was being kind of dumb. On the other hand, I was being kind of autistic.

And she’s not exactly perfect herself. The other day I asked her what she was doing.

‘I’m reading a urology,’ she said.

‘A what?’

‘A urology. You know, when someone says nice things about the dead person at a funeral.’

Aah…when it comes to teaching our daughter to communicate, I think we’ve got our work cut out for us!

Aspie Family Update, Pt 1

It has been over a month since my last post. I’d like to say it was a deliberate attempt to track incremental change over a longer timescale, but that would be a misrepresentation of reality. The truth is I could neither find the energy to write nor think of anything to say. It has, however, led to a benefit, in that, all bullshit aside, I have been able to track incremental change over a longer timescale. Which is good for all concerned.

You see, in the first thirteen or so months, Izzie changed dramatically and so did our lives, giving fertile ground for blogging. But by the time you’re over a year into parenthood, the changes become rather less profound. For one thing, by this point you’re used to the whole parenting lark, so dramatic, soul-searching incidents occur with less frequency than at first; for another, the changes in your toddler become developments in extent rather than in kind. What I mean by this is that first steps, first word, first use of a spoon, are milestones that require an entire post, but more steps, more words, and further use of the spoon don’t really warrant much comment. It’s like a person confined to a wheelchair after a horrible mountaineering accident – the first time they get up and walk they’re in all the papers and magazines, but as they continue to walk and gradually get better at it, nobody gives a crap because it’s just a person walking. We have to wait for them to climb Everest before we hear about them again.

All of this is a longwinded way of saying the time away has been a good thing, as I’ve been able to notice and reflect upon things that, had I been writing every couple of days, would surely have slipped by unnoticed.

Here, then, are the developments that have occurred in the past two months to my almost-nineteen-month-old daughter.

Communication

Izzie still can’t talk, but that’s okay, because she communicates just fine. By which I mean she points at things she wants and then grunts, nods emphatically if we pick it up, or shakes her head and screams if we fail to understand.

Which reveals a mistake that we, as first time parents, have made with our daughter – responding to her non-verbal communication. Don’t do this. It is bad.

When she first started her snippets of words and what have you, she seemed to be coming on quite well; then we started understanding her, and she suddenly stopped advancing, because who needs to talk when you can just point and grunt? So now when she asks for things we have to feign ignorance, which makes her incredibly stroppy because we hitherto understood her, but it must be endured if we want a human daughter who communicates in full sentences, and not a pet monkey.

Speaking of which, her monkey impression is great: oo-oo ah-ah. And she’s got a whole other bunch too: baa (sheep), oof oof (dog), guck guck (chicken), gack gack (duck), choo choo (train), oooo (Frankie Howerd or possibly a cow), sssss (snake, though I have no idea where she learnt that from), and ‘Ummm,’ which is her impression of a teenager and the sound she makes every time you ask her a question. At least, I hope it’s an impression and it’s not that she really is that indecisive!

To be fair, though, while she doesn’t have a broad vocabulary, she understands freaking everything. She knows all the who’s, what’s, where’s and why’s of everything you say. Over there, the other one, not on your head, where’s your bellybutton, no that’s my bellybutton, sit down, stand up, if you splash me again there’ll be trouble, get out the way of the telly, shut up and go to sleep, put the knife down, let go of my leg, stop feeding your breakfast to the dog, what happened to my youth, oh God I’m old, and the like.

In fact, what I’ve noticed is that while she understands most things, she doesn’t seem to understand negatives. For example, she understands ‘eat it’ but doesn’t understand ‘don’t eat it,’ and while she seems to grasp ‘sit on the floor’ she doesn’t understands ‘don’t sit on the floor.’ So instead of saying ‘don’t touch the plug socket’, which invariably results in her touching the plug socket, you have to distract her instead by saying something like ‘go get your crayons, we’ll do a drawing’.

And nor does she understand it if you say ‘no’: she just shakes her head and laughs and does it anyway.

At least, I hope these last few examples are because she doesn’t understand it, and not because we’re raising a right little bastard…

 

Mobility

I’ve been taking Izzie to soft play. I was brought up to believe in hell. I have found it.

Over the past two months her mobility has come on leaps and bounds, pun entirely intended. All day she runs and jumps and falls and bounces off every surface imaginable. She has inherited her mother’s total indifference to danger, and it seems that the higher the object, the more determined she is to throw herself off it.

Her favourite pastime at the moment is crawling under the dining table, dragging herself up onto a dining chair, then clambering onto the back of the sofa. Perching there a moment, she checks to make sure you’re watching, then does a forward roll/somersault onto the seat cushions and bounces onto the floor with a thud, whereupon she pulls herself to her feet, gives herself a round of applause, and then repeats the whole terrifying stunt.

The self-congratulation appears to be an important part of the whole process. I think it comes from swimming – she’s been taught to stand on the side of the pool and then, ‘One, two, three, go!’ and jump in, after which we praise her. If I’m helping her down the stairs, every so often she stands, says ‘Doo, doo, doo, oi!’ and then leaps into space. She does the same from the coffee table. She even does it standing on books, all of 5mm from the carpet: ‘doo, doo, doo, oi,’ jump, clap, repeat. Half the time, it’s really cute and entertaining; half the time it scares the bejesus out of me!

A slightly safer pastime is her newfound love of dancing. She always enjoyed gyrating to music, but now she’s turned it into an art form. We discovered this in December while watching a film scarier than any horror. I don’t normally mind kiddie movies, but this one is painful. In TV, the moment a show exceeds the point of ridiculousness, it is called ‘jumping the shark’, after a diabolical scene in Happy Days. Having now seen the abomination that is Nativity 2: Danger in the Manger! I would like to suggest a new term: ‘lowering the donkey’ – the point in a movie at which you realise it truly is an irredeemable piece of crap and you are wasting your life watching it.

Needless to say, Izzie loves it.

For the duration of the songs, she laughs and skips and dances and claps, and points at you to join in, and shouts at you if you don’t. Then, when it’s over, she wants you to rewind it so she can dance all over again. If you dare to turn it off, ouch, you’re in for a tantrum.

Don’t put it on, I hear you cry. Well, every day she points at the TV, points at you, points at the TV, starts to dance, points at you again, and then goes up and starts tapping the TV screen – come on, where the hell is my movie? I have nightmares I’m going to be watching this awful tripe until October, when it’ll be on again.

So we’re channelling all this talent and energy into ballet. One lesson and she’s learnt ‘tippee-toes’, so prances around the lounge all day waving her arms with better balance than I have.

And when bedtime approaches, the craziness increases. You can always tell when five pm arrives because Izzie starts to rotate on the spot, giggling and wobbling, until she cascades into the furniture or face plants into the floor. After twenty minutes of spinning she then charges the sofas, throwing herself face first into one, shaking her head to clear it, then charging at the other, like a turbo-charged, pint-sized pinball. I sometimes wonder if there’s not a little insanity mixed in there somewhere.

Which might explain the intensity of her tantrums…

(Cont’d…)

 

First Words

One of the major milestones all parents look forward to is their child’s first word. After all, a spoken language is what distinguishes us from the rest of the intelligent apes, and the first word is the moment when your little bundle of neediness and poop becomes a fully integrated part of the human race. Every baby diary dutifully stipulates you must record this sacred first word, and people can often tell you what it was as it sinks into the familial consciousness as a treasured anecdote.

I’m finding it’s a bit more complicated than that.

Izzie talks. That is, she makes lots of babbling noises that she combines in long streams of phonemes. Every so often, she’ll therefore come out with something not simply resembling a word, but as clear a word as you’ve ever heard. By accident.

Do these random noises count as words? I bloody hope not. About five months ago when she was sitting on our bed, she looked at me, smiled, and said as plain as day, ‘Murder.’ When I was bathing her a month after that, she pointed at me, all innocent and sweet, and said, ‘Man-boobs.’ There’s no way in hell I’m writing that in her baby diary!

Then there are the words she uses that aren’t actual words. Whenever she sees my father-in-law’s dog she says, ‘Wo-wo,’ and does it consistently enough for us to know what she means. If a word is a bunch of sounds that carry a specific meaning that is used to communicate information, then ‘wo-wo’ is definitely her first word. But ‘wo-wo’ isn’t a word – at least, not in any language of which I’m aware.

And what about words she mispronounces? If you greet her and say, ‘Hello,’ she replies with, ‘Ay-oh’. There are two problems with this one. First, she’s simply repeating what you’re saying rather than volunteering the sound herself. Secondly, ‘ay-oh’ is not ‘hello’. So do these facts invalidate it as a word?

Anyway, what she can say seems, to my mind at least, far less important than what she can understand. It’s said that for every word they can say, a child understands ten. I think that’s an underestimate – Izzie seems to understand freaking everything.

Mummy, daddy, Nana, Granny, Poppa and Gramps are a given by this age, and there’s no doubting she knows her own name. Yes, no and don’t are also in the bag, even if she chooses to ignore them more often than not. And key events are well known – bedtime (rubs eyes), nappy change (runs away), bye-bye (waves).

More impressive are the actions. Most of them are quite simple, one-action commands. ‘Where’s so-and-so?’ will prompt her to seek it out. ‘Get it for daddy,’ results in her fetching it. ‘Put it in the box,’ will make her do just that, and she’s very good at ‘hands up’, ‘clap’, and ‘twinkle, twinkle’ (opening and closing fists).

Some, however, are far more complex. If you say, ‘Mummy needs to put on her shoes,’ she crawls over to a shoe, picks it up, brings it back, and tries to put it on mummy’s foot. Generally the wrong foot, but it’s still remarkable when you consider she can’t actually speak yet. Before you know it, she’ll be making daddy his morning coffee.

So if anyone asks, many years hence, about Izzie’s first word, it was ‘murder’, followed by ‘man-boobs’, ‘wo-wo’ and ‘ay-oh’. But until she says something like ‘mummy’, I’m leaving the baby diary blank!

Five Months of Autistic Parenting, Part 3

Having Asperger’s Syndrome means you struggle to say the ‘right’ thing, misinterpret what other people are saying, fail to give due diligence to the feelings of others, and don’t appreciate that people have different needs. It also makes you rather self-centred. Mostly I can use my intellect to overcome my natural shortcomings in these areas, but the more tired I become, the harder it is to do that.

Having two tired new parents with Asperger’s in the same house with a five-month-old baby is a recipe for disaster.

This morning, for example – Lizzie is spending the day in Southampton shopping with a friend and she’s taking Izzie with her. Since I’m in desperate need of a break, I’ve been looking forward to today – for once there are no support workers, social workers or family members coming over, no urgent writing deadlines, no charity shop, no cooking, so it’s all mine, yes, all mine (he says, rubbing his hands together with a maniacal grin). I can soak in the bath with a book, make my model that has sat untouched for five months, go to the local coffee shop in the village and watch the world go by. Or I can mooch about in my underwear and watch rubbish TV. My day. Bliss.

And Lizzie would know that if she’d been listening and considering my needs.

So I’ve been up since five, fed the dog, the cat and the chickens – not to mention the baby – and I’m just waiting for Lizzie to hurry up and go when she says, ‘Oh, by the way, I want you to mow the lawn today.’

The lawn takes two hours to mow because we have a rubbish mower and a massive lawn. I have to empty the grass collecting box around twenty-six times during mowing. And it’s raining.

So I said, ‘No. Not a chance in hell. I’d rather poke out my eyeballs. You want me to do chores while you’re out on a jolly? How dare you even suggest that? This is my day.’

In hindsight, a simple, ‘No, I’d rather not,’ would probably have sufficed. Yes, I overreacted. And then she overreacted to my overreaction. And that’s how it tends to go at the moment. If we were less tired, we’d probably be able to rein ourselves in, realise the other person wasn’t being belligerent or deliberately insensitive, they just hadn’t realised their partner had been looking forward to a day off. But we flip out instead.

That is, unfortunately, part and parcel of having autism, and only to be expected.

What is not so obvious is why, as a result of my Asperger’s, I find it so difficult to entrust the care of my baby to others.

It would make life so much easier, and would have done over the past five months, to have babysitters. Lizzie has a remarkable ability to go out and then not think about home, or babies, or really much of anything (miaow!). I, however, find it nigh impossible to switch off.

The autistic brain is very susceptible to obsession – I’m using up my ‘day off’ writing about the baby! But this could also be the result of the fact that the autistic brain is also so structured that your thoughts can go round and round and round, growing bigger and more frantic with each circuit. Since Izzie was born, I haven’t rested, haven’t dropped my guard for even a moment – I am a dad, and that means constant vigilance, care and concern. After years of learning that people let you down, it’s very difficult to trust anyone else with the most precious thing in my life.

This goes for Lizzie too. As I have mentioned in previous posts, thanks to difficulties with Theory of Mind – that is, understanding how other people think – I struggle to comprehend why people would do things in a different way to me (because clearly my way is the best, which is why I’m President of Earth). I therefore find it very hard to step back – I want to take over, because Izzie is my baby and I know what she wants and I’m the best at doing it so back the hell away. This has inevitably led to friction between me and Lizzie and I realise now that I’m a total control freak.

But that’s because control keeps me safe. I’ve cleverly structured my life to avoid stressful situations and thus remain asymptomatic. If I go out to a social situation, I drive so I can leave any time it becomes too much. I sit on the end of tables so I can slip out unnoticed. I actively shun noisy and crowded environments. And so if I let others take over, I can’t ensure Izzie’s safety. I can’t be certain she’s getting what she needs, which is me, because I know best.

You see? Even I can see that I need to let go, step back, have a break, learn to trust others, and stop worrying so much when I’m not with her. But can I?

Perhaps the biggest obstacle to this is, again, my autism. I’ve always struggled to understand relationships – how to form then, how to keep them, what they mean – and I’ve only ever managed to have one friend/partner at a time. If I have a second friend, or a friend other than my partner, I feel as though I am somehow betraying the people I care about. If I have a friend, then it means Lizzie isn’t enough, and how can I say that? Of course, Lizzie has plenty of friends and I don’t feel she’s betraying me, but I resist any overtures of friendship because I don’t want to betray her.

The same is true of Izzie. If I let someone look after her, I feel I’m somehow betraying her, letting her down. I’m failing her as a dad. People tell me to stop trying to be perfect, because I’m only human, but that is like an admission of failure. Why can’t I be both?

That’s the biggest lesson I have to learn from five months of autistic parenting – I have to learn how to let go and relax. If I’m not careful, my ten-month review of autistic parenting will describe how I don’t let Izzie out of my sight and I haven’t left the house for weeks. Or it’ll just be gibberish.

The World’s Worst Word

Top of the list of words that should be expunged from the English language is ‘should’. Unfortunately, in order to make that statement, I’ve had to use it, so perhaps banning it isn’t the right answer. To rephrase, then: I would greatly appreciate it if the word ‘should’ was avoided in any conversation about life, lifestyle, parenting, babies, child development, behaviour and relationships, because ‘should’ is the world’s worst word.

Implicit, and often explicit, within the word ‘should’ is that there is only one way of doing things, the right way, and therefore if people use that word at you, they are telling you that you are not only falling short of the ideal, you are doing things wrong. ‘You should leave her to cry,’ means: ‘A proper parent leaves their child to cry. This is the only way to respond to a baby that cries. By not leaving her to cry, you are not being a proper parent. You suck.’

Okay, maybe that’s my autism reading too much into it, but how much nicer would that same sentence be if you replaced ‘should’ with ‘could’? ‘You could leave her to cry,’ means: ‘there are many options available to parents, of which this is just one. I leave it to you to make the decision as to which option is right for your family.’ See? Much better.

‘Should’ also fills your life with pressure. ‘She should be drinking five bottles a day.’ Great, but what if she only wants four? Or those days that she wants six? What then? Should we be forcing milk into her, denying her it when she’s hungry? Instead of following your instincts and adapting to reality, you feel an obligation to try to squeeze reality into a ‘should’-shaped hole, and that doesn’t make life easy for anyone.

That horrible imperative also changes the power relationship between you and whichever person said it. ‘You should change the brand of milk she drinks,’ is another way of saying, ‘I don’t respect you. There is no point in us having a conversation as adults because you are a child who cannot be trusted to make decisions. Therefore, I must fill the role of your parent and tell you exactly what to do. Switch to Aptamil.’

‘But Aptamil and Cow & Gate are the same company with different coloured packaging.’

‘Shut up, imbecile. You are incapable of deciding what is best for your baby so I will take that choice away from you. You are the hydrant and I am the dog.’

You see what I’m saying? ‘Could’ means that we are equals, you are making a suggestion and you respect my ability to sort through the conflicting information and select an appropriate course of action. ‘Should’, on the other hand, means you’re the expert and I’m the dunce, and I should do what you say because you’re the Man, and I’m the poop he just stepped in.

So next time you’re giving someone advice, think about turning that first phoneme from a ‘sh’ to a ‘c’, unless you really are that arrogant that you think you know the best way to raise my baby.

Rant over.