Tag: parenting

Parents with Autism

Gillan Drew1 Comment

I have mentioned before the overwhelming focus on children in the literature on autism, and the corresponding lack of study on adults with the condition. Indeed, researchers know next to nothing about autism and sex, and autistic parents, which seems odd given that one often leads to the other and the consequences can be profound and life-long.

Studying the issue of parents with autism would be helpful in two major respects. First, it would ensure that autistic parents received appropriate guidance and support for the demands of parenting, which, let’s face it, is difficult whether you are on the spectrum or not. Secondly, it might help to normalize the notion of autistic parents and remove much of the stigma surrounding this section of the community.

If you go online, much of what is written about autistic parents is by adult children of these same parents, and almost universally the experience seems to have been less than positive. Some say allowing autistic parents to raise neurotypical children is a form of abuse, and others that autism constitutes a ‘parenting disability’. There are even sites that claim autistic parents inevitably raise emotionally and psychologically damaged children. As an autistic parent, with an autistic wife, and raising an apparently neurotypical daughter, all I can say is: ouch.

On the other hand, I neither agree with nor believe any of these statements. For one thing, many of these parents haven’t received a diagnosis of autism by any other authority than their children, who might not necessarily be able to disentangle autism from other conditions such as narcissism, avoidant personality disorder, OCD, and just being a plain bad parent; and for another, people who have had an unhappy childhood and a strained relationship with their (autistic) parents are far more likely to write a blog about it than people who had a happy childhood and good relationship. Thus the picture is skewed away from reality because of the very lack of objective input from academic researchers mentioned above.

It’s also important to note that these apparently awful autistic parents had not received a diagnosis and therefore did not know they were autistic – and to me, knowing is everything. If you know you have autism, you know to work on certain areas in which you’re weak; you know to regulate your behaviour in order to meet the needs of your child; and you know to get help and advice from others. Autism is therefore no barrier to being an effective parent.

My belief is that your parenting ability comes down to you as an individual. There are some fantastic autistic parents out there and some terrible neurotypical parents, just as there are terrible autistic parents and fantastic neurotypical parents. The point is, a diagnosis or otherwise doesn’t dictate an individual’s ability to parent or the long-term outcomes for their child.

I was lucky enough to be interviewed by Spectrum Magazine for an article on parents with autism that discusses these very issues. It is well worth a read, and contains some beautiful photos of my wife and daughter, and unfortunately some of me as well. Here’s hoping that these holes in the story of autism will soon be filled.

Romantic and Parental Love: an Aspie’s Perspective

Gillan Drew1 Comment

When people say ‘I love you,’ what do they really mean?

As an Aspie, love has always been a confusing concept to me. When I was younger I took my cue from movies and TV, believing in a fantasy, fairy tale form of love that moved mountains, crossed oceans, and transcended space and time. People in love never argued, never had to compromise, and never had to say sorry, for love is such that they could communicate without words. It was a force so powerful it could even conquer death. Thanks Hollywood!

For some reason, the divorced and unhappily married people around me didn’t contradict my belief in a happily ever after. Indeed, they were an object lesson not to settle, to keep holding out for ‘the one’ – that person who would make everything better. I was half a person, broken and drowning, and she was half a person, broken and drowning, and together we would become a single whole, entire and swimming. We’d live in and through and for each other. Limerence, I think that’s called. Looking-for-a-miracle-cure-for-my-depression would be more accurate.

As I got older, I started to notice there were a few holes in this idea of love. For one thing, there are over seven billion people on this planet, so if there’s only one person out there for you, the odds of you finding them are too small to be worth calculating – unless you also believe in magic, and destiny, and unicorns, which I don’t. For another, from a psychological perspective, the very notion of being incomplete and needing another person to fulfil you puts you in a rather vulnerable position. Not to mention that it’s an incredibly disrespectful way of viewing your partner – only half a person without you. What rot.

I then redesigned my concept of love. It was not an emotion anymore, not a feeling, but a psychological compulsion programmed into you by biology, society and the greetings card industry. You got together with someone not to complete one another, not to make you happy but to enhance your own happiness. It was about two wholes coming together and remaining two wholes. Think two islands joined by a causeway that gets covered every high tide.

The emotional aspect of a relationship – the butterflies, the happiness, and all the other intense experiences of the honeymoon period – is simply a mislabelling of nervousness, lust and the fulfilment of social expectation. And once that exciting time fades, you’re left with a need for the other person that has developed through shared activities and the difficulty of disentangling your lives and CD collections. Not a particularly romantic idea, perhaps, but certainly more realistic.

As time went on, I decided that denying an emotional aspect to love didn’t entirely fit the reality I saw around me or that I experienced myself. And when you’re in a relationship, there is an undeniable merging of two people, a coming together of hopes and dreams, sacrifice and support, until you struggle to distinguish where you end and the other person begins. Clearly, I needed to come up with a new definition.

Love is partly a feeling, partly a psychological compulsion, partly the result of biology, partly a fulfilment of a social need, and partly an idea you consciously engage with, negotiate and decide upon yourself. Think two islands linked by a bridge, a causeway, a swamp, a lagoon, and a tangle of vegetation, all of which change depending on the height of the tide and the time of the year.

How does this work in practice? It means that my wife and I are bound together by a variety of things, some deliberate, some accidental, some beyond ourselves, some of which we’re unaware of; it means we are sometimes close, sometimes more distant, that sometimes it’s easy to connect and sometimes bloody difficult; and that ultimately, though we could sever our ties or seek other people to love, we have chosen to be together. This is what it means when we say, ‘I love you.’

Or at least, that’s what it means when we’re talking about romantic love.

Parental love is something entirely different.

There is no choice when it comes to parental love. You don’t consciously create ties with your child, psychoanalyse why you love them, adapt the form it takes to suit both of you – it just is, with an intensity beyond anything else.

And it asks no reciprocity. You’re not even sure it’s a two-way thing, and it wouldn’t really matter anyway, because you’d go on loving them regardless. You’d suffer any indignity so they don’t have to, fight the world if it was necessary, and lay down your life in a heartbeat. Autistic or otherwise, I think most parents would feel the same way.

Where autistic parents can differ is in our expression of that love. The children of autistic parents often grow up feeling unloved because, as we know we love them, we assume they know too and therefore don’t feel the need or even understand we have to tell them. Which is why, since birth, I have showered my daughter with hugs and kisses and smiles, even when they don’t come naturally to me, so she grows up feeling loved.

But it struck me the other day that there is one thing I’ve not done in the twenty-two months she’s been with us: I’ve never said to her, ‘I love you.’ It just never occurred to me to say it. I don’t know if that’s normal, I don’t know if it’s odd, but from now on I’m going to tell her every day – just so that she knows.

Even though it doesn’t come naturally to me.

Parenting and writing: more similar than you might think

Gillan Drew1 Comment

Having had my first book published last month, I can now call myself a writer. Of course, I could have called myself a writer at any point over the past twenty-five years, since that’s how long I’ve been at it, but it always felt a little pretentious, given I have barely made a penny from it. It would be like a postman, upon being asked what he does, saying, ‘I’m a fisherman,’ because at weekends he takes a rod and some maggots to his local river and casts about for fish. While he might want to be known for doing that, it’s not exactly an accurate answer, is it?

And yet, throughout my writing life, I have met no end of people who proudly introduce themselves as writers, authors, novelists, poets and even philosophers, despite never having had anything in print. On top of this, there is a really weird thing that many of the writers I’ve met have in common: none of them actually write.

I’m always amazed by how many people pack up their laptop and go to a busy cafe, park or pub in order to write in a loud, bustling and incredibly public place. I’ve had long conversations with writers about their writing, their ideas, their characters, their themes, the depths of their literary ambitions, and how if only someone took a chance on them, they’d shake up the publishing world – all without ever having written anything. I even had a tutor on a creative writing course I was taking tell me she wanted to write a novel one day. I didn’t have the heart to tell her I’d already written eight. What’s stopping you?

It seems to me that while many writers love being writers, they don’t particularly like doing writing.

That’s understandable – writing is hard. All the other aspects of the craft – planning, plotting, themes, character biographies, working out the front cover and the blurb, giving imaginary interviews in front of the mirror and picturing your book at the top of the bestseller list – those are the easy parts, the fun parts, the parts you can do with an audience. The hard part is sitting down and actually writing, day after day, week after week, churning out tens of thousands of words, editing, rewriting, reworking. Most of that stuff you can’t do in public – you do it in private, in loneliness, in blood, sweat and tears. The only publicity is the book itself, because nobody is meant to see the struggle that goes into it.

The fact is, writers write. They don’t sit around pontificating about their ‘art’ all day, worrying about which jacket makes them look the most writer-ly, or which is the best place to write where they’ll be seen and acknowledged. They knuckle down and work. They don’t wait for inspiration to hit them. They cram it in whenever and wherever they can. Some days it’s easy, some days it’s hard. Some days you have no idea if you’re doing it right and if you’re wasting your life. But you persevere. You keep going in the faith that you’re on the right path and that tomorrow it’ll all click. You keep going not because you want to, but because you need to, because it’s in you and it’s who you are.

In this way, it’s a lot like being a parent.

It’s very easy to get caught up in the superficial aspects of parenting. You take the little one to a cafe and she sits there all well-behaved and you play a game and she laughs and an old couple comes over and tells you what a great parent you are – I love that stuff. It happens to me quite often, in fact – I can’t go a week without a stranger coming up to me and telling me how awesome I am, which makes me walk around all day with a massive head, going, ‘Oh yeah, I’m the shiznit.’

Trouble is, sitting in a cafe playing with a well-behaved child as you bask in the adoration of the public is not all that different from the writer who sits in the pub and delights in telling people about the books he intends to write when his writing credits to date total zero. You’re wallowing in the glory of being a parent, without actually doing any parenting. Because parenting, like writing, can be bloody difficult.

A good parent, just like the good writer, does most of their work unseen. They do it day in, day out, and all through the night, despite the aching spine, the headaches and the tiredness. They face the monotony, the boredom and the isolation with stoic fortitude. They work, work, work, because they have no choice but to do so. They get pushed to the edge but keep their cool somehow; cuddle a kicking, screaming toddler at two in the morning when all they want to do is stay in bed; and endure the torture of a hundred mealtimes in a row that involve more tears and thrown food than spoonfuls successfully swallowed.

Sometimes they’re driven to tears themselves. Sometimes it seems utterly hopeless, and they don’t know how they can possibly get through it all. Sometimes nothing seems to work. But they still get up and do it, because it’s the only thing they can do.

The mark of a good parent is not measured by being good when everything is going well – it’s how you do when your precocious twenty-two month old is driving you up the wall by testing you, pressuring you, challenging you, from dawn to dusk each day and then again from dusk till dawn. It’s measured by what you do when you’re in a cafe and your little one is screaming bloody murder, by how you react when they’re not behaving themselves, by whether you can remain calm when everyone’s looking at you and judging you for the behaviour of your child.

Nobody sees the work that goes into a book, just as nobody sees the work that goes into a child. By the time it is ready to be released into the world, you have poured far more of your heart into it than you even thought you had in you to give. But when all is said and done, you’re only assessed on the finished product, not the work that went into creating it. So you just have to press on in the faith that one day it’ll all come good. And then maybe your kid will write that bestseller that eluded you so long!

Just let my little girl dance

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It started off innoculously enough – I was in a session with a support worker, I had some music on the TV, and the little one was dancing around the room, giggling, smiling and waving her arms like a happy little lunatic. ‘You’re going to be a dancer when you grow up, aren’t you?’ I said.

‘Wow,’ said my support worker. ‘What gender stereotyping! Why can’t we teach little girls to be doctors or mechanics?’

Considering my daughter is mostly pre-verbal, it might be a little early to start her on the finer points of anatomy and physiology, but since I was only half-serious, instead of leading with this self-evident statement, I said, ‘Because she likes dancing.’

‘Of course she likes dancing, you take her to ballet classes!’ the lady replied, as though I was somehow brainwashing my daughter into enjoying a stereotypically feminine pastime.

‘Well, actually we took her to ballet because we noticed she enjoyed dancing, not the other way around. And since she loves being the centre of attention, posing for pictures and watching herself on videos, she might prefer to be a model or an actress.’

‘Actress,’ the lady spat, ignoring everything but the final word. ‘Why can’t she be an actor?’

Notwithstanding the fact that the Oscars would take issue with this (gotta aim high, yo), I realised then that I had unwittingly wandered into a minefield of semantics, gender politics and societal expectation with someone who saw me as a gender-Nazi. Which is odd, because I’ve always considered my views on sex and gender to be rather liberal and enlightened.

I mean, I’ve always believed men and women can do pretty much any job equally well, regardless of what’s between their legs – with the possible exception of the adult entertainment industry. Whether it’s doctors, dentists, pilots, bus drivers, lecturers, tattooists, waiters or the police, the only real requirement is that a person can do the job and do it well. The greatest action movie ever made (Point Break, as if you didn’t know!) was directed by a woman. The best nurse I ever met was a man. Their sex didn’t make any difference at all – they were just damn good at doing their chosen professions.

Likewise, I’ve never considered there to be male and female jobs around the home. Most of my parents’ generation still believes that the man puts up shelves, disciplines the kids, carves the turkey and fixes the car while the woman does the washing, cleaning, cooking and ironing. That’s not how it happens in my household. We pitch in equally. Equally badly, as it turns out, but equally nonetheless.

And nor do traditional gender divisions restrict my interests and behaviours. As a kid, I read Nancy Drew books in spite of the teasing I got (even though they had the same authors as the Hardy Boys, since Carolyn Keene and Franklin W. Dixon never actually existed). My favourite movie is The Jane Austen Book Club, the DVD of which is bright pink and very much sits in the ‘chick flick’ section of the supermarket. For my parents’ silver wedding anniversary I did them a cross-stitch, and my favourite exhibit at the New Forest Show each year is the flower-arranging tent. I’m hardly an advocate of men behaving like men and women remembering their place.

So how the hell could she think I was an advocate for traditional gender roles, or that I want to restrict my daughter to a submissive position in society? And what’s so bad about being a dancer anyway?

More to the point, how could she twist something so innocent and beautiful as an infant enjoying the simple pleasure of dancing into some judgment of my supposedly totalitarian parenting techniques?

Apparently, it is because our daughter wears dresses, and has a toy kitchen, and plays with dolls. Good gosh, I am an awful father. Clearly, instead of obediently reinforcing the patriarchy, I should make her play with engines and models of the human skeleton until she damn well likes it!

In all seriousness, I see the role of father as a cross between teacher and facilitator. It is my job to teach my daughter about the world, and it is my job to encourage her natural interests and abilities and guide her into being a healthy, happy adult. And you know what? At play group, she liked playing with the kitchen, so we got her a kitchen. And at her friend’s house, she really enjoyed playing with a doll, so we got her a doll. And every morning when we open the wardrobe, she picks out her own outfit. We’re not forcing her to play with dolls or kitchens – she also has jigsaw puzzles, teddy bears, toy cars, a box of musical instruments – she chooses to play with them. And that is the crux of the issue.

There are extremists on both sides of this debate. Those who try to force their daughters to conform to the traditional female tropes of motherhood, housework and dancing  are clearly in the wrong; but so too are those who think we should force our daughters to be doctors or mechanics simply to fulfil an agenda. My daughter is an intelligent, strong-willed, independent young lady, and she will be whatever she wants to be. If, when she grows up, she does in fact wish to be a doctor, then I will support her and nobody has the right to tell her she should be a dancer instead; but equally, if she wants to be a dancer, then I’ll support her in that too, and woe betide anybody who says she ought to be a doctor.

True equality between the sexes is about freedom – the freedom for little girls and boys to choose what they enjoy doing, and what they’d like to do when they’re older, without it being dictated to them by traditionalists on the one hand and progressives on the other. In short, when I’m encouraging my daughter to dance, keep your big mouth shut.

 

I speak English, sort of

Gillan DrewLeave a comment

As the father of a twenty-month old daughter, the issue of learning to communicate in the English language is obviously high up on my list of current interests. We’re lingering at the monosyllabic phase, and while it’s fascinating that the word ‘bear’ can mean biscuit, water, bath, yoghurt, playroom, daddy sit in that chair, I want to watch Peppa Pig, and a number of other concepts we haven’t yet been able to figure out, all at the same time, it can make life a little more stressful than it needs to be. I mean, being able to tell us what she wants (biscuits), and being able to understand our response (no, you’ve already had three, you greedy little madam), would probably avoid a few of the meltdowns we’ve been experiencing lately – although, on second thought, maybe not, since the answer would still be no and she’d still have a tantrum because she wants biscuits! Regardless, learning to express our thoughts, feelings and desires through language is an important step on the road to becoming a fully-fledged member of society i.e. the moment at which you can leave home and give mum and dad a break.

Unfortunately, learning to communicate in English is easier said than done, pun entirely intended. Normally, way before the formal teaching of language in schools, kids learn to speak by being immersed in the language of their parents, and develop their communication skills through both imitation and experimentation. With two parents on the autism spectrum, however, there may be some problems with this process.

‘But you can clearly speak English!’ I hear you yell. What you really mean is that I can clearly write English, because in actual fact, a written language and a spoken language are two completely different things. I am only now realising just how true this is.

It is a well-known fact, and one I have written about before, that people with autism often take things literally, and therefore struggle with the nuances of language. While this is true, the reality of communicating in English when you have autism is far more complex than simply struggling to interpret homonyms, homophones and idioms. I mean, there are plenty of books out there that explain all of these things, and oftentimes you can work out the meaning by context. By focusing on this ‘literal interpretation of language’ spiel, it overlooks the other really weird and confusing ways that we communicate in spoken English. I’m talking about the vagaries of language that only English teachers and pedants tend to know about.

Like the way we add negative tags to positive questions, and vice versa. This morning, I said to my daughter, ‘You will be good for Granny, won’t you?’ Will you, won’t you – way to confuse the poor kid! Or when I say, ‘You haven’t done a poo, have you?’ you can almost hear the cogs whirring away as she thinks, ‘I haven’t have? Does yes mean no or yes mean yes? I don’t know, so instead I’ll just say “pooooooooo,” and leave daddy guessing.’

These constructions – a declarative statement followed by a question – are called tag questions (or question tags, depending on which side of the Atlantic you’re reading this), and these parts of spoken English can cause problems for people with autism. The modal ones – that is, those those that request confirmation of information of which you’re not certain, like, ‘You’ve just pissed in the bath water, haven’t you?’ – aren’t overly important since they simply concern knowledge. It’s the other type, the affective tag questions, that can screw up your relationships.

These are the ones that soften statements or include people in conversations – the ‘I care about you and invite you to share in my life’ questions. My wife, bless her, is a lovely lass, but she sucks at affective tags. She thinks ‘Get me a drink,’ and ‘Get me a drink, could you?’ mean the same thing, no matter how much I try to explain to her that the first is an order and treats me as a slave, without respect or consideration, while the addition of the softening tag ‘could you?’ in the second turns it into a request, that acknowledges I am a person with feelings and a need to be treated with dignity. If you can detect hurt feelings in the previous sentence, well done – even though I know she doesn’t mean it, I do sometimes wish she could speak to me with a soupcon of grace.

She’s equally bad at using the other kind of affective tag, the so-called facilitative tag, in that she doesn’t use it at all. This is the tag question that’s all about sharing and reassurance. I’ll show her a video of 2Cellos playing Thunderstruck and say, ‘This is so freaking awesome, isn’t it?’ In this manner, I am sharing my excitement and tastes with her, and inviting her to join in by agreeing with me that yes, it’s the greatest ever video on YouTube, or bringing her own opinion to bear, such as, ‘No, it’s shit’ (although nobody who has seen 2Cellos doing Thunderstruck has ever or will ever say that). If there’s something my wife is thinking about – the weather, for instance – she’ll say something like, ‘It’s so much warmer than yesterday.’ Full stop. And I look at her and think, where’s my ‘isn’t it?’ Where’s my ‘don’t you think?’ How is our daughter meant to incorporate question tags into her speech if her mother, thanks to her autism, doesn’t use them?

In all fairness to my wife, though, I tend towards the opposite extreme and use enough for the both of us. Given my problems with Theory of Mind (understanding how other people think and feel), I’m paranoid that the people I’m talking to don’t understand what I’m saying, or that I’m not understanding them correctly, or that they’re bored, or that they don’t like me, or that I’m doing something wrong, or that my thinking is flawed, so that, constantly seeking reassurance and feedback, I litter my speech with modal and affective tags – you know? Right? Yeah? Innit.

A constant problem of conversing with my wife is that she fails to respond to these cues, making me even more paranoid, and that is another aspect of spoken English usage that totally differs from the written – instant feedback. You know what I mean? You see? Do you?

Silence. As an autistic individual, she again doesn’t get that during conversations, she’s meant to go, ‘Uh-huh,’ or ‘Oh,’ or ‘Yes,’ or ‘Hmm,’ or make any one of a hundred different random noises to indicate she is listening, understanding, and involved. The silence freaks me out. Has she slipped into a coma? Have I lost her completely? Am I making any gosh-darned sense?

But then, perhaps she’s right and I’m wrong. Whenever we have an argument, I’ll throw a line at her, something like, ‘How many times have I told you not to leave your wet towel on the floor?’ and she’ll reply, ‘Sorry,’ because she knows that’s how rhetorical questions work. I don’t. So I’ll reply,  ‘I’m not asking you to say sorry, I’m asking how many times I’ve told you not to leave your towel on the floor?’ And she’ll say, ‘Sorry,’ again, because that’s still how rhetorical questions work, and I’ll reply with, ‘Sorry is not a number! I’m looking for the response, “Somewhere between dozens and hundreds,”‘ because I can be quite a dick and if someone won’t argue with me the way I want to be argued with, I’m not above telling them exactly what to say.

Then there are these wonderful things called hedges, which we slip into sentences where we’re being negative in order to reduce the impact on the other person’s feelings, because most of us don’t actually want to be mean. In spoken language, hedges often take the form of making our statements a little vague – expressions like ‘sort of’, and ‘kind of’, and ‘a bit’. I don’t think either of us use them properly.

You’re meant to say things like, ‘You’re looking sort of unwell, today,’ or, ‘Your work is a tad below what I was expecting.’ The way I use hedges is that when my wife asks me how she looks in a particular outfit, I’ll be honest and reply, ‘You look kind of like a pregnant whale with a thyroid problem.’ And then she’ll say, ‘You’re a bit of an arsehole.’ And I’ll say, ‘You’re a bit of an arsehole, aren’t you?’ confirming that, yes, I am an arsehole.

And lastly, for the people still reading, in spoken English people fill their sentences with crutch words, something I tend to incorporate into my speech and my wife does not. These are, basically, those utterly pointless words that, honestly, aren’t even, actually, effective as intensifiers, but that we use anyway to, like, buy ourselves time to think and, well, can turn into vocal tics if we’re not careful, really. You get the picture.

Given that our biggest problem at the moment is teaching my daughter to say down (‘Nom.’ Down. ‘Nom.’ D-d-d-down. ‘D-d-d-nom.’), these problems may be a way away. But, monosyllabic as she is, we’re already encountering problems with the weirdness of spoken English.

‘Have you finished your dinner?’

‘Yes.’

‘So you don’t want any pudding, do you?’

‘Yes.’

Dammit. ‘Yes, you don’t want pudding?’

‘No.’

My English teacher never taught me how to resolve this impasse!

The Long Winter

Gillan Drew1 Comment

Every year I look forward to the winter, when the trees turn into skeletons reaching bony branches into a crisp azure sky, the air fills with the reassuring scents of wood smoke and cinnamon, and as the evenings draw in I can snuggle safe in the warmth of my family’s comforting embrace. And as a bonus, I get to break out my rather fine collection of furry hats and oversized jumpers, my gloves and my scarves, and best of all my cowboy boots. Winter, I think, is my favourite time.

And then winter comes and it’s an eternal wasteland of grey days, miserable nights and an ever present sense of despair. The garden turns to mud, the dead leaves swirl about huddled bushes and overturned lawn furniture, and the cold seeps inside and seems to chill your very soul until your outlook becomes as bleak as the view from your dirt-encrusted windows. Good God, I think, I bloody hate the wintertime.

Normally, I start to feel better as soon as the daffodils begin to burst up from the frigid earth, bringing with them the promise of spring and cheerier times to come; this year, the daffodils are in full bloom and this despondency shows no sign of lifting. I’m caught in my own personal Groundhog Day, and there are six more weeks of winter.

The depression goes hand-in-hand with the tiredness. There comes a time when you have to accept that tiredness is no longer a transitory state –  it is now a part of you, a defining characteristic, just another one of your personality traits. Describe Gillan: male, six feet tall, autistic, tired, mostly friendly – provided he’s had his coffee.

I wake up tired, live tired, go to bed tired. In my dreams, I am too tired to do anything – I simply sit and stare at featureless walls in an empty room. I don’t remember the last time I felt well-rested and ready to face the day ahead. This is, of course, a familiar side-effect of being a parent. You count down the hours till the little one goes to bed, because you think you’ll be able to rest, catch up, get at least some of the way towards feeling okay again. But you don’t, because tiredness is who you are now.

Combined with the depression it becomes somewhat debilitating.

I spend hours lying on the sofa just staring at the ceiling. I think I should watch a movie, but after ten minutes I switch it off because I can’t concentrate or care. I think I should walk the dog but I can’t drag myself to my feet. I think I should write but can’t stomach the empty page. I can’t be bothered to cook, so I binge on chocolate and coffee. The other morning I ate four Creme Eggs, one after the other. Yesterday I ate three Crunchie Bars back to back, like chain smoking chocolate. And then I drank five coffees in a row just so I could get through until lunch. I’m not sure which is the most unhealthy.

I know too much, about all the wrong things. I can name dozens of serial killers, only a handful of victims; can name every state in America, but not the boroughs of my local town; know all manner of mental disorders, psychological conditions and mood stabilising medications, but can’t identify the plants that grow in my own back garden. If you need me to name a thousand movies I’ve seen, a thousand books I’ve read, a thousand bands I’ve heard, I can sit down with a pen and paper and list them for you (in fact, I do this a couple of times a year just for fun); but ask me to name a hundred people I have known in my life, I don’t think I’d be able to do it.

And that is the problem with depression – your mood dictates your thoughts, not the other way around. I have a lovely daughter, a lovely wife, a lovely family; I have a book coming out in three weeks, the culmination of a lifelong dream; and I have nothing to be unhappy about. I know this; I appreciate this; yet this awareness does nothing to lift my mood. Instead, the depression makes your brain turn on itself, devour the light and turn everything to the darkness. For darkness is not simply the absence of light – it is a physical entity that spreads and consumes all before it, a shadow fire that chills as much as it burns.

You start to wonder when last you felt happy, excited, or even at peace. You try to remember if there was ever a time you experienced what other humans call ‘joy’. You track back and back, and back even further. You remember a time when you were ten and you were surfing and…no, you weren’t happy even then. So you take it to the extreme – was I happy when I was six? Four? Am I just incapable of happiness?

And then people with no understanding say things to you, like, ‘Think happy thoughts,’ or, ‘Just pick yourself up and snap out of it,’ or, my favourite, ‘What you should do is get up early and go for a nice run, then you’ll feel better.’ If I can’t motivate myself to do those things that once gave me a modicum of pleasure, how on earth am I meant to drag myself out into the cold and the wet to exercise? Whoever recommends that course of action has no idea what it is like to battle every day of your life against simply giving up. And I am tired of fighting.

For depression is not something I have done to myself. I have not thought depressing thoughts. I have not chosen to feel this way. I have not caused it through my own weakness. Depression is something that has happened to me. It is an illness I contracted when I hit puberty, something from which I have never been free. It lies dormant for a time, only to return with a vengeance. Normally in the wintertime, to be fair. A black dog creeping in from the borderlands, uninvited. And no matter how I try to kill it with thought, medication, meditation, diet, I have no doubt it will dog my footsteps the rest of my life to come.

Luckily, for the pile of apathy writing this blog, I am a parent and a husband, and those things are more important to me than my own wellbeing. I cannot indulge my more destructive, neglectful tendencies without irrevocably destroying my self-image, and I am far too egotistical about my prowess as a father and a partner to neglect my duties towards others.

If I lived alone, as I have in the past, I would wake up in my clothes, stay in bed till lunchtime, eat junk, and go back to bed without changing, washing, shaving, opening the post, or doing any of the everyday chores that make a person a functioning member of society. Instead, as a father, I must haul my weary bones out of bed each morning to get my daughter up, dressed and fed. I have to change my clothes to set a good impression, brush my teeth when she brushes hers, eat at the table with her. In the evening I have to cook my wife a delicious and nutritious dinner and I bath when she baths. I might only be going through the motions, an imitation of a living, feeling being, but in so doing I find a way to function, despite the depression. I remain a good father and a good husband even as I cave in upon myself and sink beneath the weight of my own lethargy.

This is my life now, and I can keep it going as long as I must. I have done it before and I have no doubt I will do it again many times over. I just wish this winter would end.

Betrayed by mine own kin!

Gillan DrewLeave a comment

You spend twenty months building a bond with your child – changing her nappy, cleaning up her sick, giving her cuddles all through the night, and letting her wipe her runny nose on your shirt – and you expect a certain amount of loyalty in return. You know, the way a dog follows you because you feed it or a cat because you let it sleep on your lap. At the very least, you assume there has developed between you a modicum of trust.

Don’t be fooled. Toddlers cannot be trusted.

Yesterday morning, my daughter wanted a gingerbread biscuit that she could see on the counter in the kitchen. I knew mummy wouldn’t approve, because it was just after breakfast, but little Izzie smiled at me, pointed and said, ‘Bease,’ in her adorably cute childish fashion, so how could I resist?

There was one proviso, however – as I placed it into her outstretched fingers, I whispered to her, ‘Shh, don’t tell mummy, it’s our secret. You’ll get daddy in trouble. Okay?’

She nodded emphatically. Yes. Our secret.

I have no doubt she understood.

The moment my fingers released the biscuit, she ran into the lounge waving it in the air and shouting, ‘Mummy, mummy!’ Look what I’ve got, mummy.

‘How did you get that?’ mummy asked.

Beaming from ear to ear, my daughter pointed right at me. ‘Daddy,’ she said, sat down and ate it.

Disloyal little bastard.

This morning her mummy gave her a piece of iced doughnut to eat. ‘Ooh,’ I said, kneeling before my daughter. ‘Can daddy have some?’

She shook her  head violently. ‘No.’

‘Please?’

‘No.’ And she crammed the entire piece into her mouth, so much she couldn’t even close her lips, just so I couldn’t have it.

Disloyal little bastard.

In fact, ‘no’ has become her favourite word, particularly when she knows how much hurt it can cause.

‘Can daddy have a kiss?’

‘No.’

‘Do you love daddy?’

‘No.’

Those times she does deign to allow me to kiss her, she turns her head and points to her cheek as if to say, ‘Oh, go on then, kiss my cheek if you must, peasant, then go refill my water bottle.’

Actually, it’s her second favourite word, the favourite being, ‘mummy.’ When she gets her own way, you see, it tends to involve mummy, so she figures that if she calls everyone mummy, she’s far more likely to get what she wants.

I’d develop a complex if I wasn’t so sure of my sex. Today, for example, my wife is out, but that hasn’t prevented the name ‘mummy’ being mentioned around a thousand times, mostly screamed at me because I won’t give the little one a biscuit. All day, ‘mummy, mummy, mummy, mummy.’ Not one ‘daddy’, no matter how many episodes of the pig I let her watch, no matter how much I colour with her, read to her, build towers with her, walk her round the block – ‘mummy, mummy, mummy.’ That’s loyalty for you.

And she’s using her mother’s tendency to be more indulgent than me to play her parents off against one another. If I say no, she starts to cry and toddles over to mummy to see if she can get what she wants, and lays it on really thick by pointing at me in the midst of her despair and sobbing, as if saying, ‘Daddy was mean to me, mummy, sort him out!’ Bloody tattle-tale. It’s amazing how quickly she’s learned that skill.

And to add insult to injury, when mummy asks, ‘What’s wrong? Why are you so upset?’ my darling, cherished daughter says the word she never says under any other circumstance: ‘daddy.’

Disloyal little bastard.

 

A Heart Made of Iron

Gillan DrewLeave a comment

When I was a kid, walking to middle school each day, the teenagers I passed on their way to the upper school seemed like giants. Tall, stubbled, confident and proud, their uniforms modified to reflect their unique personalities, there was nothing they couldn’t achieve. They were gorgeous, the closest I ever got to movie stars or comic-book heroes. At least, that was the impression of an insecure, anxiety-ridden social outcast with four eyes, goofy teeth and chronic asthma.

One day, I thought, when I’m that age, it’ll all come together, it’ll all make sense. I’ll be strong, I’ll be capable, I’ll be able to cope. Teenagers are made of iron.

A few years later I became a teenager, and lived as a pimply-faced, hormonal, anxiety-ridden social outcast. I saw adults with their jobs and pensions and mortgages and I thought that when I became an adult, it would all come together, it would all make sense, and I’d finally be able to cope. Adults, I thought, are made of iron.

By the time I was twenty-five, with many years of work and study behind me, I was very much aware that growing older wasn’t actually making me feel any stronger or more capable or better able to cope. As a depressive, anxiety-ridden social outcast, I looked at people with children and I thought, wow, look at them – they’re so strong, and capable and able to cope. And I figured that when I had kids, it would all come together, it would all make sense. Parents, after all, are made of iron.

As the father of a nineteen-month old, I can tell you for a fact that I am not made of iron. Quite the contrary, actually. I might give off the impression of competence, might fool people into thinking that I’m coping perfectly well, but the truth is that I’m just very good at faking it.

In reality, I’m a little tender at the moment. A couple of weeks ago, my precious little darling discovered how to scream, and the tantrums I thought we’d experienced before were actually mild disagreements because they are nothing like what she does now.

What was hitherto a very well-behaved child has turned into a monster. Half the time, I don’t know whether to give her a hug or call a freaking exorcist.

She screams and kicks and fights every time I try to change her nappy. At breakfast she screams because she wants my food, not hers, my coffee, not her water. She screams because I won’t take her for a walk every time she wants, she screams because we won’t have dawn-to-dusk Peppa Pig, she screams because I want to go to the toilet, she screams because she steals my nose and I’m not really fussed about getting it back, she screams because I make her wear a coat to go out in the cold, she screams because I put her in a seatbelt in the car, she screams because her hands and face are dirty but she screams when I wipe them clean, she screams when I make dinner, she screams because she can’t feed her dinner to the dog, she screams because I wash behind her ears, she screams because I get her out of the bath, she screams because I dry her hair, she screams because I kiss her goodnight and she screams because I turn out the light. Phew. It’s a lot of screaming.

What’s worse is that she has an upset stomach at the moment, precipitating a greater number of nappy changes than usual, each resulting in me getting kicked in the chin, stomach and testicles; she has a nappy rash, meaning nappy changes are even more violent as I fight what seems like a wild animal in order to put on the cream; and she has developed a severe aversion to bedtime that provokes at least three hours of screaming every night.

The nightly ritual was so easy just over a week ago. Night night mummy, night night doggy, up the stairs, brush teeth, into pyjamas, read a story, pick a book for bed, into the grow bag, big kiss, lights out, silence. Bliss.

The nightly ritual for the past eight days: ‘It’s bedtime, say goodnight to mummy.’ Huge screaming fit, tears, purple face, stamping feet, I go to pick her up and she runs away and then hisses and struggles and lashes out as I catch her, screams all the way up the stairs, mega-violence at the nappy change/pyjamas, very quiet when I read her the bedtime story, then mega screams and struggles as I put her to bed. Lights out causes a guttural, alien, hacking snarl-growl, like two demons having a fight, which goes on for around ten minutes, accompanied by thuds as she thrashes about in the cot, before descending into choking, spluttering, dying sounds that mean I have to go calm her down or else I’m afraid she’ll die. It takes a long time to calm her down once she’s worked herself up into that state, and as soon as I’ve got her quiet and breathing properly again, I go to put her down and the whole ordeal starts again.

I’ve sung to her, rocked her, read to her, let her come downstairs, ignored her, and always the same result – screaming that devolves into a choking, coughing total loss of all control, which stretches from her usual bedtime at seven until gone ten o’clock. And that’s before I mention the two or three times she’s up in the night nowadays. Where before, bedtime was a blessing, it has become a nightmare.

Eight days, three hours a night, is 24 solid hours of screaming tantrums in a week. It might not sound like a lot, but when those three hours of screaming follow a twelve-hour day of regular screaming fits, trust me, your whole world shrinks down to tears, red faces and an ever present sense of drowning.

My wife’s means of coping is to ignore it, to go out and forget about it and leave me to deal with it – after six pm, and for much of the day, I’m a single parent. I could switch off from it too, I suppose, but hours and hours and hours of my daughter screaming and crying and getting herself so upset that she’s choking is not something I can just rationalise away and get over. I feel horribly sensitive, bruised inside and out. I feel like I want to burst into tears. When I’m holding my screaming, struggling child I have to fight with every fibre of my being not to run away and hide. Just five minutes, I think to myself. Dear God, five minutes surely isn’t too much to ask?

I’m still waiting for the day it’ll all come together, it’ll all make sense, and I’ll be able to cope. Until then, I’ll just have to fake it. Until then I’ll use what little strength I have to pretend I’m made of iron. Unless someone could recommend a cheap nanny?

Back-in-my-day Parents vs. Today’s Parents

Gillan DrewLeave a comment

We’ve all met them – it’s impossible not to – those people who had things so much harder in their day. Paper round uphill both ways, had to earn money or they didn’t eat, bath was a bucket in the front room, left school at fourteen, none of your namby-pamby ‘qualifications’, went to the University of Life, worked at the coal face sixteen hours a day with hand tools they had to hold with their feet, in total darkness, without breathing apparatus, lose a finger you kept working till the end of your shift, got paid a pittance but never complained because men knew how to be men, dammit, didn’t do me any harm, and your generation doesn’t even know it’s born, bloody snowflakes, the lot of you.

That’s all fine – while I don’t believe that anybody’s life is free from suffering, I accept that we have labour-saving devices that past generations could only dream of. And nor is this a new thing – in Jaws, Quint moans that there are no ‘good’ men left under the age of sixty, and that movie came out in 1975. Every generation thinks the next has it easier than they did. It’s natural. I accept that.

What I cannot accept, and what I find frankly bizarre, is how many of these people seem to want everyone to suffer the same way they did and despise any progress that makes things easier for the future – particularly when it comes to parenting.

Parents have spaces for pushchairs on buses? Well why should they? We never had those. We had to wake up our children and hold them under one arm while we collapsed the buggy and put it on the front of the bus – and with an armful of shopping too. That was how we did it and we had to cope, so they should too.

Parent-child spaces? They’re not disabled, why should they get extra-wide spaces? Is it because they have such big cars and such big pushchairs and such big car seats to keep their precious little darlings safe? We never had that, we had to make do with little cars, not even seatbelts, and we didn’t get any special treatment. They chose to be parents, get used to the struggle. And why are they so close to the store? They should put them at the back of the car park so the obese little bastards get some exercise.

Mumsnet? What a ridiculous pile of self-indulgent tripe. We didn’t have anywhere to go to get advice about our ‘darling’ sons and daughters, we had to deal with things by ourselves, on our own, with no help or support from anyone. And that goes for parenting books too – we didn’t have complicated parenting theories and techniques, we just had to get on with it. So just get on with it.

Breastfeeding discreetly in a public place? We were never allowed to do that, we had to go somewhere in private, no, we wanted to do it in private because we had self-respect, not like these modern women who whip it out in front of anyone.

And don’t get me started on disposable nappies, or bottle sterilisers, or Perfect Prep machines – we had to wash our nappies, and this was back when washing was difficult, and we had to boil the bottles and teats in water on the stove, and this was when water took hours to boil, and we had to heat the formula while our baby screamed and screamed and screamed until we thought we’d all die.

So why, I have to ask, why, if you know how hard it is to be a parent, would you want to keep things that hard for all time to come? Why would you resent anything that makes our lives that little bit easier? And are you really saying that, if you’d had in your day the advantages that we have in ours, you wouldn’t have used them?

Having a hard life doesn’t buy you a badge of honour. Nor does it make you better than anyone else, somehow superior to today’s parents, somehow purer. Being a compassionate member of society means wanting other people to have things easier than you did, so they don’t suffer quite so much.

Unless you believe that life is meant to be hard, and parents are meant to suffer, in which case I don’t think we’ll be seeing eye to eye any time soon.

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!