I've been wanting to do this for ages: scan in some of my childhood pictures and stories as in my memory they were, you know, amazing... Well, they're not terrible but... Here they are anyway. Is it weird that I loved the reruns of The Men From UNCLE aged 6?! Is it weird how much I adored Mrs Pepperpot? Don't mention the multitude of cat stories, I know, I know. I had so much time on my hands, didn't I?
An Article on Girls with Undiagnosed Autism Spectrum Disorder
by a Mother of One
“She can’t be autistic!”
How many times have we been told this by well-meaning friends and family over the last few months? How many times have we, as parents, hesitated to answer? Up until a month ago, our 17-year-old daughter had been in psychiatric care for a staggering 18 months. Before she was sectioned under the Mental Health Act, she’d attempted suicide twice, spent more time in the school counsellor’s office than the classroom, and emotionally fell apart at the smallest things. She was sent to the Child and Adolescent Mental Health Services (CAHMS) who very quickly tested her for Autism Spectrum Disorder (ASD) using the then official diagnostic criteria. The results told them she was not autistic and so that was the end of that explanation for our daughter’s mental state.
Almost a year later, ASD was mentioned again by a different psychologist. This was after she’d ricocheted from Psychiatric Intensive Care Units to Open Units to General Hospitals and back again a total of nine times over nine months. No one seemed able to help her, and she herself seemed incapable of talking about the feelings that were causing the crisis in her mental health. Was undiagnosed ASD – or more specifically, Asperger’s Syndrome (High Functioning Autism) – at the root of our daughter’s difficulties? And how was that possible when she’d ‘failed’ the initial assessment?
We ourselves were unsure and certainly any mention of autism to other people outside of hospital was met with a dismissive shake of the head; it seems everyone ‘knows’ what an autistic person is like, us included, and she didn’t fit the criteria. After all, our daughter smiles easily. She has close friends. She’s a gifted ballroom dancer. Sure, she’s always been incredibly literal, never understanding sarcasm or jokes, often observing new situations for a long time before joining in. But simply put, wasn’t she ‘too normal’, imaginative, and seemingly sociable to be autistic?
Despite the uncertainty, various psychiatrists and psychologists (a total of five who cared for our daughter across the many wards she’s been on) kept telling us that she was on the autistic spectrum, and yet they all continued to struggle to help our daughter. The hospitals either weren’t equipped with the preferred test (called ADOS) to formerly assess her – adolescent psychiatric hospitals shockingly aren’t obliged to have these tests – or she wasn’t on the ward long enough. As she was in hospital, CAHMS – who can carry out the test – wouldn’t because she was no longer under their jurisdiction. We despaired of ever getting a diagnosis. Was our daughter on the autistic spectrum or wasn’t she? And if she was – and it was important for her future care and therapy – wasn’t it standard practice to assess anyone as early as possible, even if previous initial tests had come up negative? She, and we, were left in limbo.
Specialist Autism Hospital
After a further eight months of little progress – and a further nine moves from ward to ward – our daughter was moved to a hospital that had just opened; a hospital that specialises in children with mental health problems and other difficulties, such as ASD and Asperger’s. Finally, a psychologist with a wealth of experience and research in girls with Asperger’s Syndrome met with our daughter, talked to us, asked us diagnostic questions we’d never been asked before and made her assessment. And, yes, we at last had the official confirmation that she – and we – needed: Our daughter has Autism Spectrum Disorder with Asperger’s Syndrome.
I’d like to mention here something about resilience. It seems to be a buzz word at the moment: that we should all be teaching our children to be resilient to the challenges of modern life. It’s been a needling word for me. It’s suggested that I’ve not modelled resilience well enough and that my daughter hasn’t learned this vital life skill. But I’ve realised something – and I’ve an old philosopher to thank for it. ‘The Myth of Sisyphus’ by Albert Camus revisits an ancient Greek story about a man condemned to push a boulder up a mountain, only to see it roll down again, forever. The point Camus found most interesting wasn’t that he let the boulder go, or that he went back down the mountain and started pushing it back again. The point was the turning, when Sisyphus looked down at the boulder and chose to start again. The number of times I’ve fallen, my daughter’s fallen – the number of times anyone who’s ever struggled with their mental health has fallen – isn’t a reflection on resilience. Choosing to try again is what shows true strength. With this in mind, my daughter, tested so much more in her seventeen years than most people in a lifetime, has shown a humbling amount of resilience.
And now with a diagnosis, she has at last – and most importantly – been understood.
Autistic Traits in Girls
As soon as we knew the diagnosis for certain, many of her personality traits began to make more sense. Autism in girls does not manifest in the same way as it does for boys. The initial assessment that had come up negative was never going to be positive for her as it’s geared to recognise those traits common mostly to boys only. Girls with autism may lack similar social skills as boys with ASD but girls can have the ability to hide it. They copy. They watch. They grow up through primary school seeming like any other typical girl.
Our daughter had friends. Yes, she never put up her hand in class and was reluctant to make eye contact – but we’d put that down to a sort of shyness. Yes, she was often repetitive in game-play and controlling in role-paly, but she seemed happy playing. In fact, compared with her two younger brothers, she seemed the more sociable, wanting a special friend or two to come back to play schools or do a bake sale (the organisation of both was precise). But being controlling (or bossy) is an indicator of autism in girls. Not joining in, or being quiet in class, is a sign of autism in girls. Repeating set play is a sign of autism in girls. We even learned that walking on tip-toes – something she’s always done – can be a sign of autism.
There were many other clues – signs of ASD specific to girls we didn’t know about – such as reading early and intensively; having a melt down over seemingly nothing (our daughter would cry for hours if I tidied her bedroom, even if it was just emptying her bin); retreating into fantasy worlds (our daughter had a disconcertingly ‘real’ imaginary friend called Sarah Jane up until she was six). There were in fact lots of little behavioural things we thought were just how our daughter was, which we’ve had to look at again with fresh eyes.
Perhaps it doesn’t matter. Perhaps it’s best not to give labels to children and young people – yes, people have said this to us too. But what happens to children left undiagnosed? Our daughter entered secondary school seemingly quite well-adjusted. But social interaction and the hierarchy become increasingly complex through teenage years. When someone is on the autistic spectrum, they struggle to ‘see’ the subtle shifts in expression, in tone of voice. They can often appear inappropriate or insensitive. Conversely, they are often highly sensitive. Our daughter is one of the kindest people I know, passionate about animal welfare, and often the first to comfort someone who is visibly upset. And yet, she can be completely blind to more subtle emotions. She has a tendency, for example, to persist in telling people information even when it’s clear to everyone else that they are too busy, too tired, not interested. She doesn’t recognise these clues which has led her to inadvertently offend or annoy her peers.
She actively retreated from her peer group aged fourteen. She changed school (an upheaval which she instigated because she felt so disconnected from her classmates) but it didn’t help. More and more we found her buried in fiction or dancing. She began to not eat. Her escalating anxieties prevented her from going to class. She’d swing between high-alert and apathy. In short, her mental health deteriorated. It’s extremely punishing to consider that if one of her suicide attempts had been successful, we’d have never understood what had brought her to such a dark place.
The Future for Girls with Autism Spectrum Disorder
Much research has been carried out in recent years into why fewer girls are diagnosed with ASD and Asperger’s Syndrome. It’s fantastic that this research is opening doors to girls like our daughter. Educating teachers, GPs, health visitors and the public at large is an ongoing steep, essential climb. I wonder even now, looking back at our daughter aged three (the age most boys with ASD are diagnosed), would a GP or health visitor have recognised her as autistic? She would have smiled her beautiful smile. She’d have talked to them if they asked her a direct question. She’d have seemed happy – she was in many ways happy. Would they have spotted that she walked on tiptoes? Would they have noticed her large, precise vocabulary? Would they have seen that she rocked because she was, in fact, anxious? I’d like to think yes. I’d like to think that articles like this one at least, might alert the public to the possibility of ASD in their daughters or nieces or granddaughters. I’d like to think earlier diagnosis will prevent the huge suffering our daughter has been through.
Her recovery is ongoing and not without a fall or two. As we catch up on what Asperger’s Syndrome means for our daughter, she continues to struggle within an adolescent mental health system poorly-equipped to treat children with ASD. One which has taught her to only feel safe behind locked doors and left her institutionalised. We have to be thankful, though, for the (belated) diagnosis and for the more appropriate therapies we now understand she requires – such as sensory therapy as opposed to any talking therapy she’s been subjected to.
Autism is for life. The more the differences in the condition are understood, the likelier the person with ASD will have a healthier, happier, more productive life. And isn’t that what we all want for ourselves and our loved ones? Girls and boys. Non-autistic and autistic. To be understood is a gift. I hope one day soon, everyone will understand that a smiling, kind, bright girl who loves to read and dance can be autistic too.
I haven't written a blog post for almost eighteen months. Like people often do, I might say 'life got in the way' but I've come to realise something: That phrase is nonsense. Life's always there, rolling on. Sometimes it happily weaves around you, seeming to give you space to get that painting finished or long-overdue editing started. Sometimes it seems to swamp you, snuffing out sparks of creativity. But not every spark - or not for me, anyway. And this is why life hasn't got in the way. It just seems to have selected which sparks are burning.
I first noticed this happening while I was at university. Just as the third and final year of my degree in Visual Communication was about to begin, my dad was suddenly dying. He smoked a pipe and the only exercise he undertook was a stroll around Sainsbury's three times a week. So it wasn't a surprise but it was still a shock. I was on course to get a high 2:1, if not a First, and had overall thought myself capable of being a Graphic Designer when I graduated. But then this gulf of grief swallowed me up. It felt like life took over, real life. A couple of clear memories stand out of that time and they all involve me crying. The course leader gave me a choice: To battle on through and finish the year or take a break and come back the following year. There was no choice for me. I battled on.
I said it was what my dad wanted and then, after he died three months on from diagnosis, I said it's what he would have wanted. But that's not entirely true. I knew I wouldn't go back. I suddenly hated Graphic Design. I hated Art. My final year projects were a torture. My marks slumped. I had to attend a meeting to decide whether my extenuating circumstances meant my now slovenly, snivelling 2:2 could be bolstered up to a 2:1. I'll never forget the pitying disappointment in my tutor's eyes.
Degree finished, life persisted in rolling on. Before my dad's got ill, my boyfriend and I had booked our wedding. I said we should still do it, that it's what he would have wanted. But unlike with my degree, I knew with absolute clarity I loved my boyfriend. So we pressed on and we got married. And in the meantime, I didn't paint. I didn't design. I didn't write a jot. I didn't do any of the things I'd spent my life doing. But I did start volunteering at a primary school. I did run art projects with them. I did apply to do teacher training. I did, in short, remain creative. I was like a half-pumped balloon, squeeze it and it bulges with air in a different direction.
So, as for the past eighteen months, life has squeezed me and pushed creativity to different places. I can sketch like a sprinter (something I'm normally not that fussed to do) but painting has been an agonising marathon. I can write a whole novel, but anything short - like a blog or short story (something I've loved before now) - has eluded me. But I've learned to go with the flow, that there's little point in fighting life. I trust my brain to spark where it feels it can and not to punish it when it's too damp and squibbly for even an ember.
Life doesn't get in the way. It only shifts perspectives, desires, interests. It can zoom lens priorities and crystallise what's really important. Yes, it can put a dampener on parts of yourself for a time but it always allows other unexpected parts of yourself to fire up and burn brightly.
* As a side note, I did attend various drawing classes five years following my dad's death and I painted my first proper painting five years after that. And it took me twelve years to write a story. Some creative sparks can take a long time to reignite. I like to think they always do.
I've been writing. Writing (almost) every day. Writing quietly. Ordinarily, I like to have a lot of time being quiet. Like to wrap myself in it like a duvet. But lately, I've had to: life has been noisy, consuming, worrying. Exhausting. So, when I can, I've retreated into my world with my characters and their familiar problems. Their world is often noisy and dramatic. But their conflicts are under my control. And I can always get a character to tell them all to 'shush'!
In this quiet way, I wrote a whole novel (at the moment, called The Sister of the Boy Who) and had Imogen Cooper and Abi Kohlhoff at the Golden Egg Academy read it. They had plenty to say, most of it good, with Imogen's parting comment being a worry, that the story was a 'little too quiet.' I didn't miss the irony. Stakes raised after serious editing, I sent it off to my agent, Kate Shaw. The Young Adult market is tough, she tells me. She's not sure how well my take on modern day realism will fair right now. At least she didn't mention how 'quiet' it is.
Perhaps once her caution would have worried me or dragged me down. Once I'd have asked myself: Then why am I writing? Who are these stories for if they never get published? But now I send the story off into the world, still with hope (there's always hope) but without the same expectation I might have had a few years ago. It's enough, you see, to just write. To love it. To be in my world of words and be quiet within it.
With The Sister of the Boy Who now temporarily out of my hands, I've begun another, one that's been brewing for a while - working title Outside In. I need to be writing, need to be creating, need to be quiet. It's a gift to myself. It's enough.
I've been reminded twice this week of the Queen's Christmas message (read it here). Whatever you may feel about the royal family, her 2016 speech had a strong message that's stuck with me: small acts done with great love can make a big difference. She said: "...It’s understandable that we sometimes think the world’s problems are so big that we can do little to help. On our own, we cannot end wars or wipe out injustice, but the cumulative impact of thousands of small acts of goodness can be bigger than we imagine."
So, with Imogen Cooper's post about helping two homeless people in London, and Rowena House's blog thinking about endurance and love in writing (read it here), I wondered what the small things are that I do with great love which might make a difference. Naturally, the many small things I do for my family sprung to mind. Also caring for my pets, helping out friends, creating a painting or picture for someone's birthday. All these things I do because of love. They're not entirely selfless acts. I want the 'thank you', the smile, the hug. I'm no Saint.
‘Not all of us can do great things. But we can do small things with great love’ - Saint Teresa of Calcutta
And then, of course, there's writing. Writing is where I really feel the smallness of what I'm doing. I do it because I love it. There's a selfish angle that writing stories makes me happy - even when it's hard, because all love can have great highs and lows. But the kind of stories I write that give me the greatest joy are stories of struggle, stories that explore compassion, evoke empathy, that tell of the darkness and of the light. These small acts of writing are always done with great love and, in their way, I hope will lead to greater compassion when they're read.
As the Queen said, I often feel helpless, both on a personal and a global level. Sometimes problems do seem too monumental to challenge or overcome. But, with each word I put down, maybe, maybe, this very small world I create can grow, ripple outward like a pebble hitting the surface of water.
A few weeks ago, I finished the first draft of my new story, A Thousand Times. I was euphoric. It was so much fun to write. Ideas spun out of me. I kept in mind all of the many, many things I learned when writing Not Even Myself, all the tidbits of useful writing tips I've picked up from fellow writers, the Golden Egg Academy, Alex and Jude, other YA fiction I've enjoyed. I even made a hat based on it for the Golden Egg summer social. Yes, the hat looked dodgy but it actually won a prize - surely a sign that this draft was very possibly the best thing I'd ever written, right? Erm...
"It's fragile. Leave it alone a bit" - Imogen Cooper
So, beta readers are vital. They should ideally be writers themselves, or voracious readers. You should be able to trust what they say because they say it kindly and honestly. I have really great beta readers. I sent this first draft to three of them. After two critiques I stopped the third one reading any more because - eek - the other two had already brought up a heck of a lot of 'issues.'
Bump, I crashed. My beautiful world collapsed. That first draft wasn't as wonderful as I'd led myself to believe. The trouble with falling in love is it can often blind you to flaws. And this first draft of A Thousand Times has about a thousand flaws.
I've left it alone for a week now and tried to reimagine the parts that don't work. But I find it SO much harder to redraft than first draft. Working out which parts of the critiques I want to take on board, which parts I just need to get rid of, which parts simply need describing better.
I've read a lot about how hard it is to finish a first draft of something, that finishing is half the battle. But I've found my battle lies in the redraft, in distancing myself to see what's not working. It's analytical in a way I love to do with other people's writing but seem unable to do with my own.
I tweeted Imogen Cooper on #geaqa about what to do with a first draft and she advised caution. 'It's fragile,' she said. I didn't understand what she meant but now I do. This draft is fragile. The last thing I want to do is rush at it and, both literally and metaphorically, screw it up.
I've thought of drafts like a growing tree before, all the layers of redrafting like the invisible rings in a tree. First drafts are the shoot. And you don't pinch out a shoot until it's grown a bit otherwise it dies. It needs to be left alone awhile to sprout leaves, get hardier. The first draft needs to grow in your mind before you do anything with it.
"A writer's notebook is a junkyard of the mind."
A few months ago, I went to an amazing workshop run by author Tessa Hadley. There were many lightbulb moments (which I dutifully noted down in my notebook), but the thing I most remember is capable, brilliant Tessa taking my notepad to read aloud my paragraph (potential squirm factor = high) only for said notepad to fall apart in her hands... Pages fluttered covered in scruffy handwriting scrawled at jaunty angles, sketches half-sketched, water-stained, ink smudged... Basically, a mess of thoughts, semi-started ramblings and notes about stories long-since ditched.
So am I a disorganised arty-type with no sellotape in the house? Well, yes. But is something else going on with this ever-expanding (and ever-falling apart) notebook?
Having got to know a fair few writers, there is, among many, a bit of a stationary-obsession epidemic. A new notepad will be commented upon, even fawned over. It's frankly weird. Having studied art, many artists have a similar, disturbing fondness for a decent pencil and pad of paper. I admit it; I am not immune to a beautiful sketchpad in Paperchase and there's plenty of articles, books and exhibitions concerning famous writers and artists and their notebooks.
But what are they for? Yes, notes. Yes, sketches, ideas, a turn of phrase. Author Stephen Norfolk described them as a junkyard for the mind This is close to it. Maybe, if I look carefully, there are some gems in my junk-filled notebook. However, I don't tend to keep my junk. I put it out in the dustbin for collection each Friday. I would NEVER chuck my notebook! I don't imagine many writers would. So notebooks are more than a junkyard; they're also a creative force in themselves. Each time I take mine along to my writing group, I have evidence that I've done this before, that I've dreamed and written and drawn and (even if 98% of it is unused) my notebook tells me I can do it.
I love my notebook because it's a messy, senseless, falling apart creature. I love my notebook because it's as much an expression of me as any finished story or painting or illustration. I'd go so far as to say, it's probably better.
I recently saw something about the Myth of Sisyphus, a philosophical essay by Albert Camus. Keep reading - I promise this isn't a pretentious blog! Sisyphus was a Greek character who was condemned to push a boulder up a mountain, only to see it roll down again, forever. Albert Camus discussed what Sisyphus' thoughts were when marching down the mountain, to start again in his futile task - and this is where I think there's a parallel in writing and the greatest myth of all: that, if you're a 'good' writer, writing should be easy.
Camus says: "It is during that return, that pause...(I see) a face that toils so close to stones (it) is already stone itself! I see that man going back down with a heavy yet measured step toward the torment."
When writing, it can often feel amazing. Like running down the mountain. Free. But often too there are times when it feels like carrying a boulder uphill. It's hard. Just when you think: 'I'm done! This draft is the final draft! I'm at the top of the mountain and can finally put down that boulder!' your beta reader or your agent or your editor sends it rolling back down to the bottom of the mountain and tells you to go right back and get it. You are not finished.
It's now, as Camus says, in 'that pause,' where we writers need to show our true grit, our greatest amount of belief and willpower: to persevere, to chose to go back, knowing the pain it took to get us to the top of the mountain but to start again anyway. It's what makes a piece of interesting writing become piece of promising rewriting. It's what grows a good manuscript into a fantastic published novel. 'That pause' is the difference between writing and being a writer. And it hurts. And it's worth it.
Thank goodness that, unlike poor Sisyphus, our torment doesn't have to be a lonely course. Sharing the pain is the best gift any writer can give themselves. It was one of the top tips Robin Stevens (author of Murder Most Unladylike) and Non Pratt (author of Trouble) gave at the SCBWI workshop I went to yesterday: make friends with other writers. SCBWI writers, like the writers at Golden Egg, are at various points on the mountain but they are all cheering each other on. 'Cos children's writers are a really friendly bunch.
Now, back to that boulder...
I've been keeping shtum these past few weeks, out of nerves and out of that dreaded condition Mr Darcy suffered from, pride. Lovely Imogen Cooper, after lots of suggested additions, edits and tweaks, told me my manuscript was ready to submit to Barry at Chicken House. I pretended to go with the flow. Yeah, no big deal. It's ready so I'm ready. But inside I kind of shrivelled up. This was it. Judgement time.
I know, from having paintings not accepted in exhibitions or nor sold, that rejection is a part of creating something. Not everyone is going to rate it or like it or want to part with their money to have it. But knowing and experiencing that is one thing, having immunity from the gut-wrenching feeling is quite another. And I have thin skin. Tissue thin. Part of what's been so brilliant about The Golden Egg Academy has been protection, delaying sending out to an agent until someone as in the know as Imogen tells you to submit. But it can't last forever.
So, as well as submitting to Chicken House (which is part of the deal with GEA, CH have first refusal) I submitted to agent Kate Shaw. Two weeks of waiting felt like two years. It's been awful. I've never minded too much waiting for Imogen's feedback, or Abi's, or my wonderful writing group. A little nervous but excited too. This wait had zero excitement. It was all angst. I kept planning how I'd react to different outcomes. Generally, they resulted in me sobbing into rather too many packs of biscuits.
Then... an email from Imogen popped up reading URGENT. My hands buzzed as I clicked the mouse. Oh God, oh God, oh God. And there was the most dream-like positive email from Kate. She mentioned being willing to 'walk through fire' for this book. My book. OMG.
I met Kate the following week, last week, in London which all felt terribly grown-up. Half of me felt like weeping, half of me felt like whooping. I generally stuck to talking about the book - which was probably a good thing because she said she'd like to represent my writing and be my agent. I actually held off having a little cry until I left the café. I was in shock.
So now almost a week has gone by and I've signed on The Viney Agency's dotted line. Kate had lots of ideas about a certain area in the book and I've been diving back in to, yes, rewrite a little. She's also created this great little blurb. It was strange reading something I know so well in someone else's words. But all quite exciting, like I'm singing in my head. Not because having an agent is the be-all and end-all - I think some really great writers have difficulty getting one and some don't have one at all. But because someone as lovely, bright and creative as Kate believes in my story. That's making me sing.
Yesterday, two things happened: I watched an episode of Buffy the Vampire Slayer before heading to London to the Golden Egg Academy's 3rd birthday bash, The Big Honk, at the Savile Club. Overnight, my brain seems to have merged these two things and now I'm itching to write a blog about how being in the Golden Egg Academy is just like being in the marvellous Buffy the Vampire Slayer. Bear with.
If you've never seen or heard of Buffy the Vampire Slayer rectify it immediately! It was a TV show created by the genius Joss Whedon about a girl chosen to be the slayer of demons. The story has since continued in comic book form with Dark Horse Comics. It is excellent.
So, imagine being part of the GEA is like living in Buffy's Sunnydale, a town on top of the Hellmouth. Only we're not living above a Hellmouth. We are on the precipice of the Publishing, er, mouth. Now imagine we are those people who walk the streets at night, clueless that demons are all around us; you know, the ones who blindly walk down dark allies, too busy writing to look up until...
Eek, a demon! Only not vampires (thank goodness) but Plot Tangle Blood Suckers, Evil Characterisation Demons, Howlingly Bad Voice Werewolves, Fiery Setting Monsters. Argh, you cry. You try to fight off these nasties but they are strong. Your own inner demon tells you to give up, this is a battle you can't win. Why even try? But then...
Tired of this analogy? Well I'm not finished! Even the gang on Buffy the Vampire Slayer have bad times. In the best episode EVER, Once More With Feeling (a musical that makes life worth living), all the gang, like all us Eggs - and even mentors - have times of terrible, awful, gut-wrenching self-doubt. In this particular episode, Spike (one of the demons who is in fact the key to everything good - like, for me, the Plot Tangle Blood Sucker) sings to Buffy. Yes, the singing's pretty shaky but the words are fab and apply to all of us too. I've replaced the words 'life' with 'writing' and the words 'living' with 'persisting':
'Writing's not a song,
Writing's not bliss, writing's just this,
You'll get along,
The pain that you feel, only can heal
Slay those writing demons (or make them your very best friend). Sometimes you'll have a scary episode, like Hush, or a very upsetting episode where only a really good cry will help, The Body, or a massively uplifting, joyous episode, Once More With Feeling. Just know you're not alone. You're in the gang.
PS If you need convincing, watch this youtube video and then you'll see why you should watch Buffy and Angel!