Tag: communication

What do you say in response to THAT!?

Gillan DrewLeave a comment

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

Gillan Drew3 Comments

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

Gillan DrewLeave a comment

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

Gillan Drew1 Comment

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

Gillan DrewLeave a comment

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

Gillan DrewLeave a comment

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.

Support for Parents With Autism

Gillan Drew1 Comment

This is a long one, so brace yourselves.

There’s plenty of support for parents with autism. There’s also a total lack of support for parents with autism. Weirdly contradictory, I know, but read on and I’ll explain.

While Lizzie was pregnant with Izzie, we received plenty of support on account of our autism. They gave us a consultant at the hospital, sent us to a nutritionist, referred us to the ‘special’ community midwives and introduced us to our future health visitors. We also had an outreach worker from a local children’s charity who visited us every few weeks to make sure we didn’t need anything extra and were up to speed on the processes of labour, birth, and what comes next. Pretty nifty.

The ‘special’ midwives visited us every few weeks in the safety of our own home, and gave us extra time to explain things and iron out any problems. The team was so good that when Lizzie was sent home from hospital because they didn’t believe she was in labour, three community midwives turned up when the emergency shout went out, and two of them accompanied Lizzie in the ambulance.

We had meetings involving social workers, the local autism charity and representatives of the local council to offer their help and support, too. The unborn baby was assigned a social worker and our competence was assessed (and found to be fine). We were given a fake baby to look after for a few days and attended both NHS and NCT courses on pregnancy, childbirth and breastfeeding. The midwife team could support us for 28 days after birth; the health visitors could start from 11; and they’d see us every single day if they had to. Promises were made, support was offered, and our hands were going to be held right through the pregnancy and birth and into the future.

But it hasn’t worked out like that.

The main problem we had before the birth was getting Lizzie ready for her two nights in hospital. As a medically high-risk individual, she and the baby had to remain under observation for 48-hours. Trouble is, they wouldn’t allow anyone to stay with her overnight – visiting hours ended at 8pm and partners had to be gone by midnight, not to return before 10am – and as a highly anxious person with autism, a fear of hospitals and difficulties adjusting to new situations, Lizzie was terrified of being alone, particularly with a new baby.

Various people contacted the maternity unit on our behalf, and we were even given a tour of the birthing suite, postnatal ward, Special Care Unit, Neonatal Intensive Care Unit (NICU), and Transitional Care Unit (TCU) – all of which we unfortunately got to use – but they wouldn’t budge an inch: despite Lizzie not spending a night by herself for years, having six hours of support from the autism charity each week and a hell of a lot more from family, friends, and me, and struggling to communicate when stressed or with strangers, both of which she was going to be, they would not make any exceptions for anyone. The best we got was that the hospital would try to give her a side room on the postnatal ward, or a place in the eight-bed TCU, depending on space and circumstance. So she’d just have to grin and bear it.

As I have mentioned before, the labour and birth were a bit of an ordeal. Lizzie lost almost three litres of blood, the baby spent the first two days in an incubator on NICU and the next two in the special care unit, and then another three on TCU. I would like to say that the midwives and nurses and healthcare assistants were great, and they were, but one deep problem overshadowed that whole week: where was our special dispensation for being autistic?

‘Ah,’ I hear you say. ‘Why should you get extra attention for having autism? Never happened in my day. The midwives and nurses should have been able to support perfectly well.’

And yes, they should. But there are a couple of problems with that.

Staffing is the first issue. They don’t have the time to provide the extra support a person with autism needs. On the Postnatal Ward one night there was one midwife to cover 25 beds – so presuming one baby per child, that’s one person to care for fifty people. And Lizzie was in a side room. Did the midwife have the time to check on Lizzie, explain things to a greater depth, make sure Lizzie understood, and, more importantly, that she had understood Izzie? Of course she didn’t.

Things weren’t any better on TCU. You’d think that with eight beds supported by one midwife and one healthcare assistant, you’d be seen when there was a problem. But one night, it was ten o’clock, the staff had changed over at seven, we hadn’t seen anyone for four hours and my taxi (also named ‘Dad’) was due at eleven. We were worried about Izzie as she was jaundiced and not going to the toilet, and I was worried about Lizzie, who was freaking out, and I’d buzzed three times already, so I went to find someone. It turned out the two staff were feeding two sets of twins, and they told me to wait my turn. Hardly supportive of two desperate and terrified new parents, particularly if they both have autism.

Another issue is therefore understanding. I don’t know if they’ve had training in autism and Asperger’s – they should have done as a result of the Autism Act – but I had to explain to every one of them what it was and how it affected people. They all said the same thing – ‘Oh, if she needs anything, all she has to do is ring the buzzer.’ Even without a three hour wait, the simple fact is that Lizzie isn’t capable of asking for help. She shuts down when there’s a problem, goes into herself and stops communicating. And she pretends she understands things, or thinks she understands them, when she doesn’t. I watched midwives ask if she was okay and she smiled and they walked off when I knew there was actually something wrong. And I watched as people explained things to her and she nodded intelligently and then afterwards said to me, ‘What did any of that mean?’ This is why she needed someone who knew her to advocate for her, to talk to people on her behalf as the support workers and social workers had been doing. But they still wouldn’t let me stay.

Now, imagine you’re a twenty-nine year girl – perhaps not the easiest of things. Imagine you hate hospitals and have had to have counselling from various sources to face up to the fact that you have to spend two nights away from home. You’ll be away from your partner and your regular support network, and in addition, you’ll have the responsibility of a newborn baby that you have to look after alone, without your partner backing you up.

Now imagine that you have the baby, only it’s a terrifying nineteen hour ordeal involving ambulances, blood, screaming and pain, a spinal injection, episiotomy, failed ventouse and forceps delivery. Imagine you then haemorrhage and have to have two blood transfusions, while the baby is rushed off to Intensive Care in an incubator. Imagine that instead of the two days you’ve prepared for, you have no idea how long you’ll have to stay. Imagine that they put you in a side room and ignore you for eight hours at a time while you plod back and forth to NICU, where your baby is being fed through a tube in her nose.

Now imagine you get transferred to TCU after four days, and are handed your baby and expected to get on with it. They’re too busy to sit with you and show you how to breastfeed, so they give you advice and leave. Now that the baby’s not being fed through the nose, she’s desperately hungry, and won’t stop screaming and sucking on your breast even though there’s nothing in them.

Imagine she’s been feeding for five hours, and you’re weak, and sore, and tired, and you haven’t recovered from the blood loss, and you’re in a strange place with strange people and nobody is responding when you buzz. And then they tell your partner, the one who has been standing beside you all day, supporting you, giving you strength, that he has to leave and come back almost eleven hours later.

Now imagine that you have autism.

I think that warrants a little special dispensation.

People with autism don’t like change, and with a different midwife or nurse every few hours, and no consistency from one day to the next, hospitals aren’t designed to be easy for us. With the additional problems with communication, understanding and anxiety, people with Asperger’s Syndrome and other forms of autism really need someone to advocate for them in hospitals. Ideally, a family member or partner should be allowed to stay with them to act as go-between. Hell, I’d have slept in a chair – I even asked to – if it meant I could stay and support Lizzie. It would free up nurses and midwives, provide far better care for new mothers, and be less cruel on people who have just been through a traumatic experience.

But they don’t make exceptions for anyone, apparently.

Once we were eventually out of hospital, we had great support from the midwives and health visitors. Until, unfortunately, a few weeks ago it was decided that as our village sits on the border between Hampshire and Dorset, all the people formerly looked after by Dorset health visitors (like us) must be transferred over to Hampshire health visitors. So the Dorset health visitors have washed their hands of us, but Hampshire haven’t picked us up yet. After seeing the health visitor every week since the birth, we’ve not been seen now for a month. I spoke to Hampshire and they said they’d be happy to see us, two towns over, in a year. So I rang Dorset to say that doesn’t sound right and they told me to speak to Hampshire. Again, for people who don’t respond well to change, to have support and then take it away seems like calculated cruelty.

So all in all, there are great support services out there for expectant parents with autism, and some great support services for parents with autism, but don’t expect to get much support inside hospital, because it all ends at the door. Equally, the provision of services in the community is terribly inconsistent and seems to be dependent on postcode and not need. I guess it’s lucky we’re doing so well, and nowadays don’t really need that much support, but for people further down the autism spectrum, I dread to think what could happen.

Baby Talk

Gillan DrewLeave a comment

There’s something called Dunstan Baby Language that seems quite popular at the moment. It’s the idea that all babies have five ‘words’ that they use to communicate from birth, irrespective of culture. These are:

  1. ‘Neh’ – I’m hungry (listen for the ‘n’ sound);
  2. ‘Owh’ – I’m sleepy (watch for the wide open mouth);
  3. ‘Heh’ – I’m in discomfort (listen for the ‘h’ sound);
  4. ‘Eairh’ – I have lower-abdominal gas pains (a long, drawn-out sound);
  5. ‘Eh’ – I have an upper-abdominal air bubble I’m trying to shift (short or staccato, like ‘Eh-eh-eh-eh’).

I think, to a certain extent, these are fairly accurate. Izzie does make an ‘n’ sound in her screams when she’s really hungry, while her favourite cry is ‘eairh’, and I know for a fact she’s very gassy – she’s farted nineteen times already today, not that I’m counting, and not dainty little lady farts either but truck-driver tear-a-hole-in-the-seat-of-your-pants style guffs. The rest of the sounds are rather tough to distinguish from each other, and when Izzie goes, ‘Eairh-owh-neh-heh-eh,’ it muddies the water somewhat.

What is really good about this system is that it stresses the main problems with babies: they need feeding, changing, burping, cuddling or you just have to endure their pain. If only Izzie would stick to five sounds and these five alone, we might be getting somewhere. Instead, she’s confusing the hell out of me.

You see, at root, Asperger’s Syndrome is considered a developmental disorder affecting communication and social understanding. We struggle to comprehend the nuances of everyday verbal and non-verbal language, find it difficult to form and maintain relationships, and fail to appreciate the thoughts and feelings of others. So far, these aspects of my condition have had very little impact on my parenting ability, but they are beginning to make themselves felt.

Up until about a week ago, Izzie was a socially simple baby. That is, her wants and needs were easy to understand and fulfil. She was either asleep, staring blankly at a lightbulb or window, or screwing up her face as she experimented with her muscles – no action needed – or else she was crying, so needed feeding, changing, winding or cuddling. It didn’t require a great deal of imagination or interpretation.

But all that has now changed. I was looking forward to when Izzie started smiling, and it’s undeniably cute, but I had no idea that alongside the grins would come a range of facial expressions and vocalisations communicating the whole gamut of human emotions, entirely in the non-verbal sphere. And that’s what I’m battling with right now.

When Izzie’s sad, her little bottom lip folds back and tears come into her eyes as she lets out a heart-rending whimper; when she’s tired, she yawns; and when she’s hungry, she sucks her fingers. In addition, when I chirrup like a bird or make funny faces at her, she frowns as though bewildered, and when I lean in close to her, her eyes go wide as if alarmed. And that’s the limit of what I can decipher.

Alongside these expressions, she sticks out her tongue, rolls her eyes, chews on her fists, kicks her legs, swings her arms, wiggles her fingers, grips onto things, claws her face, rubs her eyes, thrashes her head from side to side, grabs her nose, kicks off her blankets and booties and trousers, slaps her cheeks, purses her lips, goes rigid like a plank or scrunches tight into a ball, lifts her arms above her head (don’t shoot me!) or reaches one up with the other at her waist (Superman!), and that’s just scratching the surface. None of these gestures seem consistent or communicate very much – sometimes the tongue out means she’s hungry, sometimes not; pursing her lips means she’s peeing except when she isn’t; and she rubs her eyes when she’s tired or else about to spend the next eight hours awake. So I watch her and feel helplessly confused.

The babbling is even worse. Whenever Izzie’s now awake, she’s constantly talking, cooing, muttering, coughing, squeaking, grunting, spitting and spluttering. It makes me surprisingly anxious. What on earth is she saying? What does she want?

Every time she ‘says’ something I leap up to see what she’s asking for, what I as a dad need to do. I feel like I’m letting her down because I don’t speak baby and can’t figure out what she’s blathering on about. Sometimes I find myself hoping she’ll cry, because I can deal with that – it means something’s wrong and I can fix it. But I can’t fix something when I don’t know it’s broken.

Apparently, I am told, most of the time Izzie doesn’t want anything. I should just let her talk. Or talk back to her. But what about? I explained how laser printers worked yesterday, the tripartite division of government the day before, which I’m not sure she got because she had a good chuckle midway through. And at least when I talk to the dog, he pays attention – Izzie couldn’t seem to care less if I was there or not. And none of it sounds like neh, owh, heh, eairh or eh!

Nobody prepared me for this phase. Roll on when she can use actual words. That’s only a couple of weeks away, right? Right?

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