An Adult With an Autism Diagnosis

Well, it’s here: today my book, ‘An Adult With an Autism Diagnosis: A Guide for the Newly Diagnosed‘ is released into the world. You can buy it from Amazon by following one of these links: Amazon UKAmazon US, or from your regular book supplier.

Here is the blurb:

Being diagnosed with autism as an adult can be disorienting and isolating; however, if you can understand the condition and how it affects perceptions, relationships, and your relationship with the world in general, a happy and successful life is attainable. Through an introduction to the autism spectrum, and how the Level 1 diagnosis is characterised, the author draws on personal experiences to provide positive advice on dealing with life, health, and relationships following an adult diagnosis.

The effect of autism on social skills is described with tips for dealing with family and personal relationships, parenting, living arrangements, and employment. Important topics include disclosure, available resources, and options for different therapeutic routes. On reading this book, you will learn a lot more about the autism spectrum at Level 1, be able to separate the facts from the myths, and gain an appreciation of the strengths of autism, and how autism can affect many aspects of everyday life. Drawing from the author’s lived experience, this book is an essential guide for all newly diagnosed adults on the autism spectrum, their families and friends, and all professionals new to working with adults with ASDs.

So, why did I write this book? The short answer is that when I was diagnosed with autism at the age of 28, having only heard of Asperger’s Syndrome and high-functioning autism a year previously, I was sent away without so much as a leaflet to explain what it was, why I had it, how it would affect my life, and why it had taken so long to identify. I had nobody to talk to – nobody knowledgeable, at least – who could help me come to terms with this life-changing news.

Like anybody, I turned to books and the internet. I discovered, much to my dismay, that books on autism seemed to fall into three categories: those for autistic children; those for parents of autistic children; and those for healthcare professionals working in the field. There was very little about adults with the condition and nothing for the many thousands of people diagnosed each year as adults.

The internet was worse. There were dozens of sites, and now hundreds, if not thousands, offering conflicting, confusing, inaccurate, unreliable, opinionated and impenetrable information and advice, often littered with jargon and insider knowledge, with no explanations for the layperson. I therefore struggled to accept the diagnosis, to make sense of where I now found myself, and to understand what any of it meant for my future.

I wrote this book for people who find themselves in a similar situation, a one-stop shop for those newly diagnosed with Asperger’s and ASD Level 1. It is not exhaustive, not ‘the only book on autism you will ever need’, but it contains answers to everything I wanted to know when I was first diagnosed. It is designed to help explain the basics, untangle the jargon, and describe in clear and plain terms how autism might affect the various parts of your life.

If this book can help just one person avoid some of the confusion and grief that I went through upon being diagnosed, if it can help them learn about their condition and be able to see the diagnosis not as an end but as a new beginning, and if it can make them feel not quite so alone in the world, then the effort will have been worth it.

Happy reading!

Gillan Drew

 

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Just let my little girl dance

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

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

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.