THE WORLD IS TESTING ME!
THE WIRING IN MY BRAIN IS TESTING ME!
I’M ANNOYING EVERYONE!
EVERYONE’S ANNOYING ME!
IT’S A BIT OF BOTH!
THE WORLD IS TESTING ME!
THE WIRING IN MY BRAIN IS TESTING ME!
IT’S A BIT OF BOTH!
THE WORLD IS TESTING ME!
THE WIRING IN MY BRAIN IS TESTING ME!
I’M ANNOYING EVERYONE!
EVERYONE’S ANNOYING ME!
IT’S A BIT OF BOTH!
THE WORLD IS TESTING ME!
THE WIRING IN MY BRAIN IS TESTING ME!
IT’S A BIT OF BOTH!
I’ve been thinking about this obsession with looking younger. I just had a spam email advertising looking 10 years younger in 10 minutes. I don’t actually want to look any younger. I like being a grown up. I don’t want to walk around with my husband looking like he’s my father. I am proud to have kids in their late teens and to look like I’m old enough to be their mother.
I have no desire to look like an expressionless, startled, immature, unexperienced child or object. I like looking experienced, less threatening, and I like how other women chat to me when I’m shopping. That never used to happen when I was younger. I like how my sexuality has developed, settled and become a part of who I am instead of a feature.
Yes, it’s nice to look and feel healthy whenever possible but I certainly don’t want to go back in time. There’s a reason why I look like I’m over forty – and that’s because I am. It fits.
Yet I believe we live in a world where quite the opposite is true – and people who want, take and show off are given unhealthy and ugly undue respect for being selfish, power-hungry and greedy; where somehow it is okay to steal as much as one wants regardless of the unfairness, decide to throw back a little where one chooses to celebrity-studded charities that shouldn’t even exist – and this is weirdly better and more applauded than never stealing at all.
Every day I feel guilty for the imbalance and inequality in my life compared with others. I see admiration for cars and houses and businesses that are bigger and more damaging than necessary or fair, and I wonder why we should be so impressed, and how on earth we could believe that anyone, anywhere deserves more – especially when it is based on want not need?
My brain feels full of ping-pong balls at the moment. I’ve not blogged as much in the last few weeks as I had been doing and, as a consequence, I’m fizzing with all sorts of thoughts that are bouncing against one another and messing with my thinking, so I’m not entirely sure what will spew out as I write this.
Getting used to having an autistic spectrum condition – not just these last five months but also bringing the whole of the rest of the 44-year-old me to autism, getting her to come to terms with it and giving it to all of the mes of the past is like being thrown up in the air. I’ve been floating through life since February. Therefore, understandably, my thoughts have mainly been about autism and Aspergers, and how it affects me and my family, and the outside world’s perception – not just of me but also of what I say. I see how I am misunderstood a lot.
I’m a little worried people have recently lowered their expectations of me: that they may not trust my fury at injustice or others’ bad behaviour; that they may question my judgement; that they may think I am less capable of being a mother, of independence, of rationality, of empathy. I’m even wondering if they may be inventing unreasonable behaviour where it did not previously exist. That is, that something a neurotypical person may get away with, an autistic person may not get away with because of our “baggage”, if you like. To know someone is autistic automatically makes him/her seem more unreasonable. It happens. I see it. I’ve also read very very many social network posts by desperate “Aspies” crying out for the misunderstanding to stop. Unless you’ve been trawling through the groups yourself, you may struggle to believe what an enormous problem it is.
To be honest, I occasionally feel a little patronised. The unreasonable one must be the autistic, right? It’s almost like an escape route for non-autistics – a cheap way of winning perhaps. Am I being sideways glanced now, rather than being seen as a whole and an equal?
I feel a little as if I have been treated a little differently. Just a little mind you. I feel a little doubted when I raise concerns sometimes. And I feel people not trusting my sense of humour quite so much. Surely that can’t be sarcasm?! She’s autistic. Yet, yes, I am as sarcastic as ever! When I joke about my life, people are trying to fix me instead of joining in with the joke. If I said I tripped while out on my walk today I’m beginning to worry that people are now going to start saying ‘You shouldn’t be out walking alone,’ instead of ‘Whoops! You clumsy arse! I do that!’ (I haven’t tripped today. Yet…)
When I get cross about something and my husband rolls his eyes and says nothing, is he now processing my anger differently? Has he automatically put it down to autism and therefore not worthy of belief or debate or respect? Has he assumed I am being unreasonable?
Is he? I don’t know.
I guess, because I’ve been so open about my condition and my self-discovery, I’m going to have to learn to live with the paranoia of knowing people know now and I’ll always be wondering…
And Twitter has gone deadly quiet. I seem to have lost Twitter.
Is it the honesty?
I see how people see problems in my honesty, where I simply see honesty. Or is it the freakish fearful way society still views autism?
You, Dear Reader, are reading this through your eyes. You may have made some kind of conclusion about how I must be finding my autistic spectrum diagnosis to be a burden after all, or you may be nodding and thinking ‘See, I knew labels were a bad thing!’
The reality is that Asperger’s is a welcome diagnosis, a welcome label, and welcome identity for me.
My problem is how some, some, other people treat me, perceive me, read me and reposition me. What I want is not for people to decide what I am or am not capable of suddenly, what I must and must not be thinking, but to ask me – because I am in a better position than ever now to know what I am capable of and why some things seem daunting. When I didn’t have Asperger’s (that I or anyone else knew of) I was worried that people’s expectations of me were too high. Now I worry that they are too low. It’s like some assumption that I’m all autistic all over the place now and incapable of everything I’ve been doing for years, and all my days are filled with autistic awfulness. Yes, you can put my habit of screaming as if I’m being murdered when a door slams unexpectedly or the dog barks right next to me down to my autism. That is horrible and I shake for ages afterwards. I am easily terrified, easily startled, easily inconsolable if a noise breaks my safe noise level or breaks into my safe space. It’s all I can do to stop myself from putting my hands over my ears and crying. We can call that an unavoidable draw-back of my autism and my enormous fear and sensory processing problems and my problems dealing with the unexpected. And there are things that are an anxiety problem, such as going somewhere where I know I will have to deal with lots of people in lots of different ways. These are not new problems.
But my opinions, my abilities, my strengths, my rationality, my empathy, my sense of humour… all still stand too. And I am prouder than ever of my strengths. I see just how strong I have been, and just how capable – against all the badly-packaged stereotypes which cloud the individual variations. But I don’t feel others think I am strong or doing well and I’m trying to work out why.
It’s partly my fault because of my honesty and my blogging. I just don’t share enough of the good stuff, I guess. It’s difficult though. I’ve never been a bragger.
I write about a bad day and write nothing else this month, therefore I had one bad day in a month? Or were they all bad days? Well the truth is, most of them were pretty normal and average and I must have looked like a pretty ordinary person going about her pretty ordinary life to outsiders. The good thing is, that now I get through normal and ordinary and I think, ‘Well done, me.’
I’m not going to stop being honest. I actually don’t think I can. This will of course result in people thinking I am useless or not coping, but I feel duty-bound to share and reach out, and talk and talk and talk, and keep talking about autism and Asperger’s until everyone knows you can’t stereotype us and that the label is our label to do with as we choose. I want to support the autism community, and be another voice striving to be heard and understood.
I think what I’m trying to say is:
I’m autistic – don’t feel sorry for me!
I’ve got Asperger’s – don’t stereotype me!
I have autistic spectrum problems – don’t think I’m not capable!
I have Bad Aspie moments – don’t think I’m always like that!
I’m honest – and I’m going to try harder to be honest about the good stuff too!
When I say, ‘this is difficult’, ‘that was awful’, ‘this is painful’, ‘I didn’t want to do that’, ‘I struggled with this’, I often forget to say, ‘but I did it’, ‘I got through it’, ‘I made a conscious decision about the best way to cope with that’, ‘Holy crap – I’m amazing!’. And I often feel exhausted and torn, like I’ve climbed a mountain or wrestled a crocodile, but proud of myself, glad I survived, and the big kid in me wants others to say ‘I’m impressed. I know it’s tough for you sometimes. Go, you!’ Only they don’t because I’m an adult and they can see no mountain, no crocodile, no amazing feat.
Well done, me.
I don’t want to leave the comradeship and solidarity and common struggle I’ve seen in the last few months there where it is: hidden, desperate, misunderstood, outcast almost.
Please keep talking and sharing.
Today is a pacing, ranting, door-slamming day. I am full of energy but no direction. I am spiked with frustration but no reason. I cannot pinpoint what is wrong or verbalise my intense distress. I try to guess at what is wrong but sentences are a mess and words won’t come and it all sounds stupid. It’s not the truth anyway.
I feel the close proximity of other humans like a bad smell. Their movements scratch away in the circle of my safe space. Today I need my safe space to be big and they are all in it, moving, making noise, being in my world. I must whisper when I want to shout, I must be polite when I want to swear.
Where will I go with these internal explosives?
So I pace. Up and down, up and down.
I rant. It’s all nonsense but I need to spit out words and hear the tension escape on my breath.
15 years ago we moved to a house with a field. I told someone I needed somewhere where I could run and scream. I didn’t know I was going to say that. I didn’t know why I said it.
I know now.
She asked if I did run into the field and scream, and I said no, just knowing I had the space made me feel better.
15 years ago I didn’t know I had Asperger’s. I just thought I was a freak.
Now we don’t have a house with a field. We have neighbours and a road and I sometimes feel the world is caving in on me. Today I feel bombarded, confused and hyperactive. I want to release all my energy but I need to know I won’t find obstacles. Today is a day I cannot cope with obstacles. Like a toy car with a pull back motor, I want to know I can just go and go and go until I have completely unwound in the direction I have chosen. Changing direction is tough. It confuses me and baffles me, and on days like today it tips me up and leaves me with my wound up motor whirring haplessly.
I worry about others with Autism and Asperger’s when I feel like this. Where are they going? What are they doing? How are they coping?
I have different rooms, a garden, a bicycle, we live near the sea. I can play music, mow the lawn, lie down. I can keep searching for the right coping strategy or tell people things are not right and I need out. What do those without my choices, without my language skills do?
Everyone with autism needs something they can do and/or a place they can go to to release, rest and renew. To help me, I am writing this and next I am going to take a brisk walk. If I still feel overwhelmed I can garden or sit quietly alone. Choices and freedom and strategies I do have. However awful today feels, however much I feel like screaming, I know I’m one of the lucky ones.
We don’t tend to watch TV talent shows or a lot of sport in our house. I see how easily children (and adults) can become overly impressed with celebrity, with superficial adoration from a crowd, with narrow, one-sided ideas of success and achievement that, rather peculiarly, seem to exclude almost everything that is truly good in the world. And yet somehow modern media and its ideas of good role models has got to our youngest child: through kids’ TV, through school friends, through films and radio. She has been fed this notion of being noticed, of being the centre of attention as some kind of ambition. Like so many young people these days her list of “Things to Be When I Grow Up” includes a singular rather than a group mentality.
For me, the best people are not celebrities, not sportsmen and sportswomen, not winners, not rich, not on TV talent shows, not actors, not royalty, not in government; not Richard Branson, David Beckham, Barrack Obama, Cheryl Cole, not even J.K. Rowling or the lovely Stephen Fry. No, for me, the best people are the ones we will never know: the ones not striving for recognition, power, money, top jobs, top positions, top earnings, or top speeds. Our best role models are the people we may probably never meet or just never notice. We may pass them in the street without being awestruck, they may stand quietly behind us in the queue, they might deliver our online shopping or serve lunches at our children’s schools.
Once in a while you might catch a glimpse of them in a newspaper photo holding a placard in a crowd, or their head bobbing amongst many on a TV screen as they join in striving for a better world. Just one in a number fighting for a cause, content to be one of many, part of a struggle, part of a solution.
The photo next to a description of a true hero, a true role model, is an empty box. They don’t want our attention or strive for our adoration. We must find our role models in ourselves and accept that the true heroes are lost in the crowd -because by singling ourselves out for some higher place, we put ourselves before others and therefore we can no longer be the best we can be.
I don’t know exactly who all the true role models are for me and my children, but I know they are out there and I know what they do. They think well of others, they help others, they think about their actions and how they impact on others. They teach, they nurse, they fix, they heal; they inspire quietly, slowly and indirectly through consistent goodness and thoughtfulness and not by some crazy drive for individual achievement.
Everyone has a skin;
a protective layer to prevent and repel.
Some skins are thick and watertight,
impervious and resilient.
But an autism skin is thin and raw.
It stings, it burns, it prickles and it bleeds.
One small scratch is all it takes for days of pain.
And over the years, the many scars struggle to fade.
If you prick me do I not bleed…?
…And bleed and bleed and bleed and bleed and bleed…?
Please don’t prick me.
I wrote this because I see how nonautistic people struggle to comprehend our reactions and our pain. No one’s saying autism has the monopoly on pain and sensitivity, but an autistic reaction is immediate and often overpowering. We take everything in, we take it to heart, we find it hard to process and hard to recover. Everyone deserves a chance, sensitivity and thoughtfulness, but an autistic person needs extra protection always because our defences are thin and we are too easily shaken.
It can often feel like poking a hornet’s nest when you argue with an aspie, and instead of stopping, people tend to continue jabbing and questioning, ‘Why are you behaving like this?’ ‘Behave like me.’ ‘Get over it.’ ‘Stop it.’
When you reach this situation of desperation and frustration, it means you’re getting us wrong: you’re provoking us.
It’s not the right thing to tell us we’re behaving badly because that’s not how we see it. We see you behaving badly. Eventually, after some hard work, we reach a stage where we contort our thinking to how we think you want us to think and react but it’s tiring and we feel sad that yet again we moved our world for your sake. But you don’t see that you only remember us as reactionary.
Meanwhile, you move on and we continue hurting.
It’s not easy seeing social rules and interaction through a different lens but we’ve had a jolly good go at it over the years. Remember that and think about seeing it our way sometimes.
What I don’t want the world thinking is that we all need fixing, and that people like me should never have been like me.
Quite a few times I’ve read that those with autism feel like an alien in the company of neuro-typical people. Like many other Aspies, I often find myself feeling not so much “wrong in the world” as “in the wrong world”. I feel perfectly at home and not wrong at all when in my world. And yet we are still viewed, all too often, as something that has gone wrong – as if something happened that shouldn’t.
Previously in the firing line have been vaccinations, herbicides and mercury – to name but a few. You’ll note that a lot of the above could be categorised neatly in the “blame the parents but most especially blame the mother” camp. (I suspect you could google almost anything and see it causes autism.)
But… as milk comes from females, male hormones come from men, mercury is a planet, vaccinations come from needles, herbicides kill weeds, and stress comes from homework, I’m starting to form a picture of the true autism cause. And my scientific research has produced some helpful findings…
Kids: if your transgender, alien, needlework teacher comes into school wearing a dead dandelion and gives you homework….
RUN!!!!! You might catch autism.
Seriously though: most people don’t want autism, it would seem. They don’t want their children to have it either. But mostly it looks like it is the people who don’t have it who fear it the most – in the same way people fear homosexuality or immigration, I suppose. It’s fear that leads to scaremongering and scape-goating. We become obsessed with blame and avoidance. And while I appreciate that many of the more extreme traits of autism such as the more defined sensory processing problems and considerable communication problems in some, make autism an often painful hell for individuals and their families, it isn’t like that all the time, and I am concerned about treating autism as a disease or an illness that we must find a cause and a cure for. It is neither a disease nor an illness: it is a way of being – just like being gay or being left-handed, and I’m worried the cause and cure obsession gets in the way of acceptance and understanding.
I think autism is simply passed down in the genes in the same way left-handedness is. (Remember how that was seen as wrong and needed fixing? Brain scans prove the brain is arranged differently. It shouldn’t be seen as a fault.) My father was left-handed. My younger sister is left-handed. I am not left-handed, but I expect I carry the gene. When two people carrying a gene get together the likelihood of a child presenting with something is greater. I was bound to have blue eyes, for example: both my parents had blue eyes. I think both my parents had autistic traits too. But they were undiagnosed and most people would not have suspected it.
I can’t speak for all people with autism and their families because some of my traits are mild and, being on the high-functioning/Asperger’s side, some don’t even exist. And I can’t speak for all the children struggling to fit in right now who haven’t yet learned to love themselves and feel glad they found joy in their own uniqueness and their own way of appreciating life. Many will, though, and I wish I could show them the future.
I can’t even speak for all the people with high-functioning autism and Asperger’s – because, just like everyone else, we are all individuals and we all struggle and cope differently with different situations. But what I don’t want the world thinking is that we all need fixing, and that people like me should never have been like me.
Here’s the reaction from someone recently when told by my husband that I have Asperger’s: ‘I’m sorry to hear that.’
Why is he sorry?
Well he’s sorry because he sees it as a problem. And unfortunately being made to feel like a problem is a massive cause of stress for us.
You don’t have to have autism to struggle or cause other people problems
I, incidentally, believe I am not a problem. In fact know I am not. I am a loving wife and mother. I work – albeit from home – and contribute to the running of the business. I have a huge, huge heart, I cook, I clean, I garden, I grow food for my family. I made sure I read to all three of my children every night until they were old enough to read to me (and even then I still read to them when they wanted me too), I gave them books, paper, art materials, healthy food, plenty of outdoors play. I was their main carer for many years. I keep them warm and let them be themselves. I assess every situation every day in life and decide what is needed of me. I fill in the gaps where my husband has short-comings and he fills in the gaps where I have short-comings. I believe we compliment each other. I am musical, creative and imaginative. I can write, play the piano and play the flute. In the last few years I have completed 13 Open University modules and gained a degree, a literature and writing diploma, published a book, taught myself to grow things and use a camera. I believe a lot of what I have achieved is partly because of being an Aspie, and partly despite it. The things that make me uncomfortable I try to avoid, and I try not to let others be too affected by my behaviour. Mostly this has become more successful since accepting Apserger’s and explaining myself to my family. When I do have days when I struggle, I can see how trying to place myself in the outside world is the problem. In the smaller world that I/we have developed at home, I am not a problem. But you don’t have to have autism to struggle or cause other people problems. I often think neuro-typical people cause autistic people as many problems – if not more – than we cause them, because we’ve had to try to understand their world.
I have worked hard on figuring out why for years I did feel like I was a problem and I have found it’s only to do with other people and a lack of understanding that makes me a problem. So, in essence, it isn’t all about me.
It breaks my heart that people think people like me are like me because something went wrong.
Read my blog, look at my photos, look at my garden, my children, my life: tell me what’s so very wrong with me? If you took away my autism, sure, things wouldn’t bother me so much, but surely we need people in our world who are deeply bothered by things and intent on solving and resolving things. Cure ignorance not me.
And please, please, please don’t be sorry.
Dear Family and Friends,
Why I need to live as an Aspergirl (or a woman with Asperger’s Syndrome)
Lately you may have noticed what might seem to be an inordinate amount of self-indulgent navel-gazing from me. However I prefer to call it mandatory self-reflective self-awareness after a lifetime of avoiding dealing with myself and a feeling that I have a confused identity.
It’s only three months since the rather swift realisation that I must be on the autistic spectrum, and only 6 weeks since a psychologist agreed with me. And this processing and resetting of who I thought I was has brought enormous highs and lows (the lows mostly come in the form of unhappy memories), plus a tonne of necessary thinking. At 44-years-old, it’s an enormous thing to take in, and it can’t be done overnight or even in a few weeks or months.
I am re-evaluating and examining my past, present and future, and am currently completely wrapped up in a new way of thinking about myself and the world around me. I realise now how different other people are from me in the way they handle life and emotions. Although I feel different about my place in the world and am readjusting, I’m not so completely different in my head or my actions because I’ve always had autism, so I’m still me, but I can better see why I find other people so perplexing and always have. I suppose, in a way, I am readjusting other people just as much as I’m readjusting myself.
Mostly I’m very happy and relieved about the diagnosis, but I am still finding life difficult and still suffer with anxiety and still swing back into trying to cope like a “neuro-typical” person (that’s the non-autistic brains among you). Recently though, I’m beginning to use the Asperger’s like a gentle hand on the shoulder to say ‘You are pushing yourself too hard. You’re heading for a meltdown. You really don’t need to hate yourself. It’s okay to say you can’t do this.’ And I find the most beautiful peaceful pleasure from finding myself in the middle of doing something alone for hours and knowing now that that’s okay.
But it’s still just the beginning and I’m still in a bit of a mess. I don’t know how long before the dust settles and I get to feel I am successfully rebuilding my life. Currently I feel like I lay 10 bricks and then knock 8 over, and I’m having some fairly distressing days. And I can’t shake the guilt.
The guilt is enormous.
You see I can’t get over the feeling that my actions and needs affect you all and you will never quite understand or accept it. Knowing that other people have a different brain wiring from mine means I’ve been misreading many of you – and you me – for 44 years. And that will never stop. And yesterday that feeling made me want to cry and cry and cry.
I don’t think people with autism ever completely grow up. In many ways this is good and keeps a sense of wonderment and excitement and a thirst for new knowledge surging through us daily, but in other ways it makes us vulnerable, easily distressed and regularly disappointed with the world.
I need you all to know that I am not being selfish at the moment and I don’t feel angry or depressed or unsociable or uncaring but I do feel busy. I feel very busy inside. I can’t remember things you’ve told me, I can’t always remember to say the right thing at the right time. I can’t read all your emails, I can’t remember dates, I can’t take in information and I can’t hold a decent conversation. For years I made motherhood and family my life’s project and pushed myself to perform whatever role was necessary for each individual person in my life. It meant that I did very little else – because for a person with Asperger’s to get things right we have to focus on one thing at a time. Looking back to when the children were young, I really threw myself into “Project Parent” and failed to understand how anyone could possibly be doing anything else.
So now, I am taking some all-important time to think about me so that I can make more sense of things and get those bricks to stay in place. Breaking out of this readjustment phase to go back to pretending to be normal seems to be impossible. It’s as if I need to back away from everything and everyone for a while.
What I ask of you is patience and your permission for me to be quiet. And please let me continue to be self-reflective a little while longer.
When I find my bricks are staying in place more often, and I feel stronger, I think I will be less obsessed with Asperger’s and autism and how it fits me, and I will just live it. And live it I will. I think if you’re autistic and you’re not living as an autistic person in your head and in your understanding of yourself – either because you’re completely unaware, in denial or wish to pretend to be normal, then you’re not giving yourself and those around you the opportunity to regularly remind yourself that people don’t think or react the same way you do and not just in an “everyone’s different” kind of way but in an “autism is different” kind of way.
Right now I think that going over what I do and how I react on a daily – sometimes hourly – basis is important and helpful. How I am perceived by others has always been important to me and always will be. I care very much if I think people have got me wrong – and unfortunately I feel this has happened all throughout my life. Going back in time and revisiting past events, conversations and relationships has been difficult and painful but instead of leaving dirty old bandages over festering wounds, I want to open them up, clean them and let them heal. I’m surprising myself by feeling quite forgiving of people I’ve hated or felt hurt by for years, because I can see now how they didn’t understand and how easy it was for them to get me wrong.
And now a request for the future: I wish you could understand the difficulties and the exhaustion, and not take my actions at face value. I wish you could know that my silences are nothing personal. I wish you could look through the lens of autism and see that an expression on my face, a tone in my voice, an action, a silence, a disappearance are not what you think they are. But if you have a neurotypical brain that’s not possible and you see the world through that lens and interpret things differently from me. So instead please can I ask you to know that you simply don’t understand (I know some great books if you do want to understand!), and that when you think bad of me to think again because I’ve been fighting every day to fit and not get it wrong and to do what I think you want of me, but because of my brain wiring I don’t understand you either and my version of right might be your version of wrong. For the near future I need space and time to deal with what has happened and is happening and I can’t guarantee anyone anything. That’s just how it has to be.
Change is massive and distressing for people with autism. In recent years I’ve had to attempt to deal with my family splintering and reducing through sisters moving away and my father and father-in-law dying, and my fragile sense of identity being smashed. Creating a new sense of identity is slow for me and I’m finding I need extra time alone to process at my extra slow rate.
Ironically, as an autistic person, even though I may back away, I need you all more than you will ever know. Because having a small number of people I can trust and feel safe with is everything to me. And when I love people I really, really love them. All of my emotions are off the scale. I’m just sorry I can’t always show them in the typical/expected ways.
Please know I am doing my best, even when it doesn’t look like it. And in my head I am working hard all the time.
Deepest, fondest love,
Often I will not mind being the one who regularly sits back or stands in a corner and lets others do all the talking and make all the noise. The quiet observation means I often see things most other people do not, and I enjoy having “busy” eyes and noticing things. And I’m usually so exhausted by the emotions of a stressful world that I am glad I’m not forced to fill the gaps with words I haven’t had time to be sure I want to say.
But sometimes I know I could have said so much more and so much better and the feeling of things unsaid or things unchallenged hangs in the air for years and years, and I find myself haunted by the ghosts of dead conversations and the phantoms of lost opportunity. I will always have a heart heavy with the untrue stuff I’ve let people think.
Despite this regular yearning to go back in time, to put things straight, to explain myself or challenge some assumptions, I still wouldn’t swap what I’ve got.
I wouldn’t want to be confident, outgoing and able to say exactly what I’m feeling and say it well in exchange for my quiet reflection and my eye for detail.
Today, when I was out walking the dog, I was surrounded by fields of buttercups and dandelions against a rich blue sky. The dandelions were mostly turned to seed heads ready for the next gusts of wind, and the buttercups gleamed with such a saponaceous yellow I realised how they got their name. As I walked along, one dandelion stood out as taller and straighter than the others; its seed head lifted proudly above its neighbours (that’s not it in the picture. I didn’t have my camera with me so I had to find one in the garden when I got home). But when I passed it I realised it was leaning to the right and was in fact quite crooked. It was just that one angle that had made it look straight. It wasn’t better or more special than any of the others at all but you’d be forgiven for being fooled by just one glance. (Yes, as I write this, I am thinking of people I’ve met who can fool others!)
I believe the autistic brain has an eye for detail and gift for noticing unusual things. We don’t see a whole view but the things that make it up. I saw the first swallow in my peripheral vision a few weeks ago, and so we were ready for them and looking up at the sky when they all flew by. Like a camera that zooms in and out, we zoom in and see the bits and bobs of life, the exquisite elements of the natural world and the nitty gritty reality of weeds and muck in a beautiful view. I wrote recently how an eye for detail can be a burden sometimes – especially when you apply that detailed observation to yourself or jobs that need doing, but on the whole it is an exciting and fun way to be.
PS I wrote a Flash Fiction called Zoom Out three years ago, so it’s about time I wrote something called Zoom in
I’m gradually stopping fighting who I am.
It’s not an overnight success and I still have wobbles – and of course I always will, but the anxiety, perfectionism and regular sense of failure are not being quite so very tough on me recently.
It’s all since my Asperger’s diagnosis and the slow realisation that almost every part of my life was a fight. I knew already that socialising and performing fairly normal everyday stuff had been especially tiring and stressful for me, and the gradual acceptance of my autistic brain since February had been helping see why and what I’d been dealing with. But there’s a whole host of other stuff that I’m seeing.
I’ve been stressing, worrying and feeling I’m failing all my life about who I am on every level – from the hair on the top of my head, right down to my underwear; from dirty windows, to whether or not I’ve earned the right for any self-fulfilment. There’s always been a feeling of need for drive, performance, achievement and a packed day – whether or not there might be any reason for such performance or indeed any enjoyment involved. And because of this I have lived a whole life of being pretty much disappointed with myself all the time. And it had been getting worse as I got older.
I’ve written this before elsewhere but there came a point in my life when I was literally looking at the dirty windows in our house and not seeing the beautiful view. In fact the minute we moved into the house we used to have in the countryside I stopped appreciating it and began my downward spiral of looking for negatives. My eye for detail picked out endless jobs, minute imperfections became enormous tasks and I could never relax. I’ve always had unwritten rules and lists in my head about what constitutes appropriate actions, behaviours, words, appearances and lifestyle choices. But I was never sure I was getting it right so I had to try everything. And I spent every day wondering just what it was everybody wanted from me and finding the different versions I came up with didn’t fit together. In the back of my head there was always this feeling that I would get found out. For quite what? I’m not sure… And so I had to keep looking to see what it was I should do next to achieve ultimate appropriateness. In hindsight I could say I was trying to fit in: to hide my differences but if I go back in time and think about what my motives were I’m not sure. The truth is I’ve been wearing myself down mentally and physically with the worry and effort it takes to try – and fail – to turn one living thing into another. And it can’t be done. The important message here is it shouldn’t be done. It can be faked but it’s just a front. The actuality of me is me, not something else. It’s not as obvious as it sounds when you know just what having a differently wired brain entails. The metamorphosing is dangerous and painful.
I’ve always been autistic but have only become truly aware of it, by virtue of a psychologist’s conclusion, for a month now. In the last four weeks I’ve allowed myself to feel tired and not tried to fight it or tell myself I’m not allowed to feel tired. I’ve let Richard ask our son to pick our youngest daughter up from school and not cried that I should do it and we shouldn’t be asking our son. I can see there’s no point in sobbing and blubbering through things that aren’t necessary or can be rearranged just so I may strive for an image of acceptability rather than a manageable reality. My actions are (or should be) based on my abilities and strengths not received perceptions of behaviour. And, yes, everyone knows this is fine if you’re someone who just wants to dress a bit differently or you have diverse tastes (or whatever) but it’s difficult if you feel different through and through – in not just a couple of ways but in many, many significant ways. Ways that often stand out as perhaps not pulling your weight or not being a normal parent. And it has been difficult, painfully difficult, to be always trying to push myself to not stand out.
Pushing oneself through a mangle of everyone else’s ordinary every day for years takes its toll. It makes you feel ill and you end up with a myriad of aches and pains and unexplained health niggles.
And it gets harder into middle age, in my opinion, to do it without the safety net opportunity to say ‘Look. I have Asperger’s/autism. I can’t do that/I need a break.’ – even if it’s just to yourself.
So it sounds like I’m doing less and lying in bed, more, right? Well, no. Not at all. Quite the opposite. That crazy perfectionist drive and quest for a fulfilled day and completed tasks is still there but the calming touch of new realisation adds a sprinkling of delegation and manageability to everything. Reading about brain wiring helps me to see patterns and make predictions. If I do A there’s a good chance I may get outcome B but there’s a possibility D will rear its ugly head and E might have to be implemented. Or if I do W, based on the way I’m feeling today there’s a good chance not only X but also Y and Z – and we all know that’s a troublesome combination! So let’s just C, shall we? ;)
It’s not enough that I thought I knew myself. I needed to know my condition and why it was driving me to be so damned detail-orientated and why it was telling me to panic about everything until I had stomach pains so I could see that pattern of reaction that I was never able to predict before. Because why would you suddenly feel like crying and want to go home? Believe it or not I never really expected or predicted most of my wobblies (I now know them as meltdowns). Why would I? It’s not normal. So it can’t happen.
Only it can happen if you have Asperger’s.
Ah. I get it now.
So, picture this.
After reading about how autism and Asperger’s affects other people and the minutiae of their daily lives, how their drive and anxiety is affected by their eye for detail and their perfectionism, I sit back and think. I absorb yet more information about how a mind put together in a different way is bound to make different observations, and then I get up and I plod on with my daily life noting how I am going about my everyday tasks in a perfectionist way. I pretty much do everything I did before and days get back to a kind of normal (our normal). But slowly, slowly I begin to wonder what I want autism to control, what I have to let autism control and what I don’t have to let autism to control. And of course I wonder what probably has nothing to do with autism whatsoever.
I’ve got a silly fringe (that’s “bangs” if you’re American – which is totally funny because bangs means having sex…). It looks like a wave. I have a cowlick one side and it swishes over in a silly big curve. When I was 4 or 5 I was so fed up of looking at my fringe, I cut it off. Yes, it looked even more silly after that. These days I can spend ages blow-drying it down flat and faffing with the rest of my hair to make it look okay enough for me to not completely hate it and be distracted by it all day. Likewise with my face: I stand really close to the mirror every morning and pinpoint every imperfection and cover every inch of my face in makeup. It takes a big chunk of my time in the morning. Yes, lots of women are like that – it’s called conditioning, but I’m using it as an example, so bear with me… When I take washing up to the kitchen sink, I will notice the windows aren’t perfectly clean, I will notice the sink isn’t perfectly clean. When I walk past the bathroom I will notice the bathroom isn’t perfectly clean, I will notice every smell that hangs in the air. If I hold a finger to my mouth in thought I will notice my nail is jagged and I will chew at it until it’s short and painful. My point is: I notice too much. I worry too much, I faff too much, and I’m never able to narrow it down to what exactly is deserving of me faffing and what really is not. Unless I distract myself with a project like gardening or writing, I am Speck Detective all day every day. Life is just a list of jobs with no end in sight. Because perfection will never be reached. How sad is that?
My hair isn’t autistic. At least I don’t think so! My obsession with it might be or it might not be. But being distracted irritated and distressed by it all day might very well be. So a few days ago I pushed my fringe away from my face, stopped blow-drying it and let it wave. I cut inches off the rest of my hair and I now have a collarbone length, wavy bob with no styling. I just wash and go, as they say.
I’m learning that I don’t need to look at myself so closely and so critically all the time and I can stop assuming other people are too – because, let’s face it most other people don’t have Asperger’s and are not looking at things in the detailed way I am.
I don’t know what, if anything, will be chopped off next on my list of pointless daily faffs or what I will enjoy continuing to obsess about but I’m looking forward to finding out. And laughing at my fringe.
Good grief. It so does look like a wave though…
What I’ve come to realise this year is even those of us on the spectrum can have preconceptions or narrow views about autism. It is precisely those preconceptions that prevent many of us from becoming diagnosed and prevent those not on the spectrum from being more aware and more considerate.
If you’re looking for the trainspotter with no empathy and a funny walk, who doesn’t understand sarcasm or fashion or popular music, and can’t ever make any changes in his life, then you’re missing most of us. If you’re looking for someone with no friends and who kicks, bites and screams, and who can never fit into society then you’re still missing most of us. These traits exist but they are not part of everyday life for everyone with autism and Asperger’s.
I thought my sense of humour, my understanding of others, my love of sarcasm and of new things; my interest in what’s happening in the world, the way I can change my routines, the way I have no fixed narrow interest, the way I can have a proper to-and-fro conversation, and an empathy for others so big it is literally physical, all meant I couldn’t have an autistic spectrum condition. (Let’s not call it a “disorder”, please: many of us feel very much in order.) And I didn’t know that women with Asperger’s can be so very different from men with Asperger’s they can seem to have a completely different condition on the surface. And I’d read about autism on a psychology course and even written a short children’s story for an autism charity, completely unaware of my own condition!
By the way, recent studies have shown the no empathy stuff is mostly bullshit. Ask us.
In order to know autism you don’t just have to have it yourself. In fact, many people without autism can understand it very well by studying and working with autism. To understand autism, you have to know people with autism: preferably male and female, adults and children, those suffering severely from their traits and those with high-functioning autism and Asperger’s. There is no one defining trait, no specific behaviour. You have to read about autism, let the people with autism tell you how they feel, and be ready to be proved wrong and have your preconceptions turned on their head. And, above all that, always remember you cannot presume to know and understand the mind of another person.
Anxiety and social anxiety are very common problems in autism but you’ll still find many autistic people going to work every day. Tiredness and the need for quiet are common traits in autism but you’ll still find many autistic people living in a noisy household and getting up early every day. I struggle terribly in the morning and take a very long time to surface but you can find many autistic people rising at dawn so they can enjoy the undistracted peace of early mornings.
Inside each and every autistic person is an individual set of likes, dislikes and opinions, the same as everyone else. Some of us present with the more recognised stereotypical physical signs you’re looking for, but many of us won’t. But what I do believe we do have in common (correct me if I’m wrong) is a regular sense of being overwhelmed and frustrated in a world dominated by neuro-typical people – and if you want to know why and what can make us feel better, don’t assume. Ask us.
My own knowledge of autism is still far from vast. I have mainly read about my own condition and others with Asperger’s/high-functioning autism – those who have good communication skills, but just knowing my knowledge is limited is part of staying open-minded and being ready for more and further understanding.
N.B. There’s nothing wrong with liking trains. I think because many of us are so disappointed by human error and distressed by the unreliability of living things, there can be something comforting about the predictability of machines.
A gentle twist of perspective and a kinder acceptance of me from others and from myself.
That’s how I feel about the conclusion that I have an autistic spectrum condition – one that if I had been assessed for 2 years ago would have been called Asperger’s. I’m still going to call it Asperger’s and call myself an Aspie. Asperger’s is different from other autistic spectrum conditions in that there is no delay in language development in childhood. Because people with Asperger’s have no language problems, it can be harder to spot, and I’ll bet there are hundreds if not thousands of people living with it that are unaware and are putting their traits and behaviours down to other problems or conditions.
The dust is finally settling here. It’s been a rather swift arrival at a new and different sense of self from that first suggestion from my friend, Elli (thank you, Elli!) in February, through all the reading and email queries I sent in March and the appointment and conclusion in April. It’s such a short space of time to be switching your thinking about yourself so drastically that it’s been dominating my life. It’s been a whumping great deviation from the me I thought I was three months ago to the me I’m just getting to know and love a little bit more now. But just knowing for myself that an autistic spectrum condition was very, very likely didn’t give me enough of a feeling of the affirmation I needed. I, personally, needed more relief from elsewhere – exoneration perhaps? Something that would be a metaphorical and literal document I could wave at people and give the whole process a seal of approval. Although I accept that others say just knowing for themselves is enough, I don’t understand it. For me this is as much about other people as it is about me. Why should I pretend? Why should I give the wrong impression? Why should I be dishonest about my feelings? I need other people to know about this and think about this and realise how difficult life has been for me. I want everyone to know that I get sensory overloads, how I can’t cope with situations I can’t control, how I need a bit of extra TLC sometimes. How I simply am different, and how fitting the neuro-typical world is very bloody hard work on a regular basis for me. At the moment while I am still processing everything, I am pretty much totally wrapped up in the whole thing and feel like slapping bright paint all over my body and running around naked so people can see just how different and out-of-the-ordinary I really feel.
“Normality” and expectation do still take up a great big chunk of my life though, as I find myself getting on with all that is needed to make a home tick along. It took a week (and a mini-meltdown) before I allowed myself the indulgence of sitting quietly and reading my report through properly and giving me the me-ness I need to carry on.
To the untrained eye I may not look any different and I may not behave any differently from they way I was 3 months ago. Why should I? Why would I? But, actually, already, I am: I’m standing taller, I’m holding myself differently, I’ve swept my hair from my face and I’ve lost a little weight. I’ve stopped pigging out, and I’m beginning to stop hating myself. I’m smiling more. I’m being nicer to my husband, and I feel we’re getting on better than ever. We’re having conversations about what it’s like to be me and I feel that that’s okay and he’s not annoyed or irritated by it (not every time anyway). And it’s not all negative anymore. It’s not only a string of problems anymore. It’s about how I’m different and there’s no point pretending otherwise. I feel calmer and less angry. I can actually see how I might just be a little bit lovable and I don’t feel so insecure about Richard’s feelings towards me.
The changes in my thought processes and my patience are marked too. But only to me. Despite appearances this is massive. It’s rearranged my whole history, my whole way of looking at life and given me a “now” – a “here and now” that I didn’t have before. This time is good. This age is good. I’ve been waiting all my life for an age and a time that suited me – I’ve always felt out-of-place and now I feel in place. The myriad of little tweaks Richard and I have had to make in the last couple of weeks to the way we look at me have answered and explained everything. All the knots are going and everything is gradually smoothing out. It’s like I was all at sea before and now I’m sailing. It’s all at once both the same life but a totally different one too. And I know that makes sense! It just does.
The girl who was too quiet, fidgety and reluctant to join in and who slowly dropped out of education has been reformed as the girl who did well to cope considering what she was dealing with and how difficult it was to concentrate in a classroom situation, and who should have had more support and understanding.
The unsettled, emotional young woman who failed to hold down a job for any length of time, and who was never satisfied with anything has been reformed as the perfectionist, Aspie woman who fought bravely against her instincts to run away and hide for years and who deserves a pat on the back for keeping on keeping on for so long – but who should have had more support and understanding.
You can’t get support and understanding for nothing though. How can you get other people to support and understand what you don’t understand yourself? Life was all about fears that I knew I shouldn’t have had and I never talked about my difficulties – they were too weird, too not normal, too untypical. I could see how other people seemed to enjoy doing things I hated, and endured things I couldn’t even contemplate, and I couldn’t see around, through or over that. I just kept schtum. I have been held captive in a solitary cell for years where the bars were made of “normal” and “social expectation” and “guilt” and “what does everybody want from me?” And I never knew the only key to open the lock was understanding.
For years a favourite song of mine has been I Wish I Knew How It Would Feel To Be Free sung by Nina Simone. I will play it and twirl around the kitchen with tears in my eyes. I’ve always felt trapped, and known I had an inner me and an inner strength that didn’t know where to go or how to show itself. But trapped by what? I didn’t know. I tried to guess. I made things up. I think now I felt trapped by what I didn’t know and what I couldn’t share. This line in the song always stood out for me, but now more so than ever: “I wish you could know what it means to be me.” No one can ever know what it means to be me, but some books written by fellow aspie women have come pretty close, and that soaring feeling of finally getting somewhere makes me just want to cry all over again.
I took the first steps by being honest in my writing about five years ago. It was like the old cliché of opening a vein onto the page. Once I started, thoughts and feelings came flooding out that even I didn’t know I held. From that honesty and new perspective came questions:
Why did I feel this way, behave this way, want a different life from so many others?
That honesty – and the bravery it took, and the support from people who read my writing and didn’t mind about my foibles – or who seemed to like me for them anyway was good but not good enough. It’s great that people can say ‘I know you’re shitty sometimes but I love you all the same.’ But what if I don’t feel I’m being shitty. What if I don’t believe I am shitty? What if I’m not being shitty? What if it’s because I’m speaking a slightly different language from a slightly different perspective and actually there’s not a thread of shitty in my intent. I’d rather people could stop seeing me as likeable shitty but instead as someone with autism who is having a meltdown or a crisis in communication. I’d rather people took the time to understand that autism can sometimes mean feeling shitty looks like being shitty, but it’s not the same. It’s really not the same.
And it’s great for online friends to say it doesn’t matter that I’m unsociable. But what about the people offline? That shortage of social interaction face-to-face can really cause other people problems. But what if I’m actually not unsociable at all? What if I’m burnt out, struggling, exhausted, dying for some time out. I’d rather people saw me as a woman with Asperger’s who has to battle anxiety beyond anything anyone else can imagine on a minute-by-minute basis and see how I need extra care, extra time and an understanding of my silences. Just not answering someone is weird and potentially rude, but just not having the words or the energy is different. It’s okay to be me but even more okayer to see me through the perspective of autism and let people see it’s not what they thought.
My point is I wasn’t good enough for me without Asperger’s as an explanation. I give off an aura of something I’m not. I hate how I don’t cope and I hate all the horrid physical symptoms that being anxious give me. Now I know what tools I am and am not armed with, I know I am coping better than I thought and I always was. It was just that I was trying to drink lemonade when my body is designed to drink chamomile tea.
And that’s where Elli came in. Elli has known me for ten years since we both participated in Open University social forums for parents, expectant mums and mothers with young babies. It sounds like she spotted something about me then but it was too soon to say anything. Over the years she’s seen me write and rant and talk about my family and my struggles, take photos, blog, and then, more recently, open up about my extreme anxiety. And that’s when she made her move. Elli sent me a short, friendly message to ask if I’d ever considered I might have Asperger’s, and because I knew she was experienced in the area and knew what she was talking about, I decided to take her seriously. And it’s from a book she recommended, written by a woman who only self-diagnosed, I decided I wanted a more official assessment for myself. And then everything began to fall into place bit by bit.
So now I know I’m okay and I need other people to know I’m okay. And not just okay in the Old Rachel sense of the word but okay in the New Rachel sense of the word. New Rachel has something to tell you: She has Asperger’s Syndrome, AKA autism. It wears her out. If she’s being seemingly normal around you, then you can bet your bottom dollar she is making a non-stop huge effort and that after you’ve seen her she will be exhausted and crave solitude and quiet. If any situation goes on for too long she may need to escape or there’s a chance she’ll blow, behave weirdly or simply stop talking. Rachel doesn’t crave the company of people or social situations like other people do but she can enjoy controlled situations in short bursts – especially with people she can be herself around. She likes her home and her husband and her children, her dog and her garden and her peace. Rachel loves other people, thinks about and worries about everyone regularly. She is genuinely interested in other people and finding someone she has something in common with makes her super happy. She has a deep interest in society and human behaviour and wishes the whole world would be nicer to each other but she realises now she has to be nice to herself first in order to survive.
Rachel can’t stand something going on around her when she is trying to think. It feels like it stops the pathways in her brain from working. She needs to shut everything out in order to be creative. Rachel feels she must be creative regularly to feel whole.
Now that you know it is Asperger’s and not depression or rudeness or laziness or a bad attitude or hostility perhaps you can see why she needed this assessment and understanding and how it is helping her.
I don’t need anyone looking after me. I’m a coper, I’m a determined, bloody-minded fighter – and I now know a bit more about the extent of that fighting. But I do need care and I do need the right to go ahead and be an autistic person. Because that is what I am. And now I’ve got that right.
Not doing “normal” very well knocked my confidence and my self-esteem. As my school life worsened and I graduated into adulthood unprepared, I slowly lost the belief that I was as clever or as capable as some of my peers. I began to feel that no one else believed in me either. When you are young, thinking that no one believes in you can stop you chasing your dreams. The psychologist wrote on my report that my problems increased when social demands increased and that I underestimate my achievements. Understanding the connection between my life experiences and the difficulties imposed by my condition makes everything make sense. I understand how my sensory problems and anxiety have altered my sense of self because of the way I experience the world. One of the first things the autism assessment did for me was put to bed any doubts about my intelligence. I scored on the 98th percentile for IQ and for verbal comprehension, and the 92nd percentile for perceptual reasoning. When the psychologist told me I was in the top 2% for intelligence I assumed I’d misheard her.
I wasn’t entirely sure what I wanted to read in my report. Once I’d got the verbal conclusion from the psychologist on the day of my assessment I didn’t know what to expect in the post, but what I got was like a great big hug: There was the acknowledgement that what I’d been experiencing all my life was difficult and traumatic and a suggestion that my better understanding of it would help to reduce stress but there was also a recognition of my exhaustion, my achievements (it’s nice to see them written down by someone else!), and, better yet, there it was in black and white: “Through assessment and subsequent reading on the subject, Rachel will be able to obtain a clearer understanding about the nature of her anxieties. This means there is an opportunity for Rachel to accept some areas that she finds just too difficult (and not have to feel guilty about it).”
There. That’s what I wanted. I need to stop feeling guilty.
The psychologist concluded my report with words that made me cry:
“Rachel has shown great internal strength and resilience to have achieved so much already. I’m sure that with the greater understanding she has about Autism Spectrum difficulties and sensory difficulties, she will be able to decide on what other areas of life that she would like to tackle.”
For now I’m just concentrating on getting to know the new me and looking at everything I do and feel in a new way. And giving myself permission to be alone because it’s okay to and I’m supposed to.
Along with all this I’d rather people knew why. I’d rather people understood, and I’d like Richard to be armed with the knowledge to explain on my behalf if ever he needs to. Because just acting weirdly or differently leaves people to fill in the blanks with the wrong information and that can hurt.
The psychologist hoped I had found the process a positive experience. I can honestly say I can’t think of anything else I’ve done in the last few years that has been this positive. Talking to someone who is neither friend nor family who was simply there to gather information meant Richard and I could both talk honestly about things we didn’t perhaps feel comfortable telling other people. It also meant that, as someone official with years of experience working with people with autism, the psychologist made the whole thing real and something to be taken seriously – because no matter how much people claim to know you and understand you, unless they have autism themselves they don’t “get” it. How can they? I think it helped Richard to take the whole thing about me more seriously, and I really hope it means he respects and admires just what it’s taken for me to come this far.
Never underestimate the power of a woman with autism. And never underestimate the power of an autism assessment.
Thanks again, Elli!
I think it’s safe to say that if the human race were mainly made up of autistic people it would be quite a different place from the world we recognise today. If countries were run by highly-functioning autistics/people with Asperger’s, the rules would be a bit different. There would be a greater emphasis on fairness and many world problems would be solved by people who prefer to do rather than talk and give speeches all the time. There would be a gobsmackingly big increase in new inventions and new medicines. And all itchy uniforms would be ditched for soft, comfy cotton or nudity. There would be Escape and Chillout Pods in every shop, school and workplace. And it would be illegal to say ‘Face your Fears’ ever again. But there might be an unusually high resistance to change and there would probably be some pretty polarised views on what is and what isn’t important or interesting and what we want for our children. Despite a strong sense of justice and a fear of conflict and pain, it’s just possible that too many people with strong views one way or the other might cause stand-offs between communities and nations. Maybe the risk of war would be greater. Maybe it would be equal. Or maybe we would do away with war all together because there would be no soldiers, and no one thought to create weapons. Why the heck would you want to waste time and money killing people, after all? Maybe however much we disagreed with our fellow earth dwellers we just wouldn’t see the point in fighting. In an autistic community you can just ignore the people you disagree with.
But where would the sense of community extend to? Would it end where the house wall ends? Where the street ends?
In my thinking my community goes on and on. Its reaches right around the world and back again. I am not restricted by manmade barriers. I think you’ll find a lot of autistic people show concern for those beyond an observable community in the sense of a street, a village, a country or a set of beliefs. We are not constricted by the same structures. We are often so alone in our world and in our thinking that we are not confined by the same social constructs and actually think bigger.
I’m thinking a lot this week about how society behaves. How people expect a lot from each other without having a clue about how demanding they are being. There are sets of unwritten rules about manners and appropriate behaviour that are so set in stone, so conventional, they are not even discussed.
And then someone like me comes along who doesn’t play by the rules all the time and then they are discussed. Like apparently not looking at someone and holding their gaze while they are talking to you is rude! I didn’t know that. How is that even rude anyway? In the autistic world we see staring at someone in a conversation as a threat, as a challenge, as a distraction. It’s much more pleasant, sensible, polite and friendly to move your eyes around a bit and not threaten other people. If someone loves you, they’ll stare at you safely when you’re not looking. Give them space to think. They know you’re interested in what you’re saying. Otherwise you wouldn’t even be in the same room together! Obviously.
In this world, run by autistic people, you 1 in 88 of the population non-autistic people (1 in 88-ish. That number keeps changing – I don’t know what you’re up to…) need to learn the rules and do as we do. LOOK AWAY WHEN I’M TALKING TO YOU! Just turn you body toward me and nod now and then.
And then there’s that thing when if someone’s having a birthday you’re supposed to ask a load of people to do something with you of an evening. Maybe go out, maybe have a dinner party. Yeah, right. Why would you want to do that?! In the autistic world, you get your favourite thing for tea, you have it by yourself or with your 1/2/3/4/5 favourite person/people (okay 5 is stretching it a bit) and watch your favourite programme or film on telly or even just hang out with some other hermits on the Internet. Now THAT is how you have a good evening. DO IT! You can have alcohol too if you need it and even have a little dance when no one’s looking. Groovy is still happening in Autistic World. Don’t waste a load of money and a load of time making idle chit chat and gossiping with people you don’t know EXCEEDINGLY well. You know it’s better if you’re around people who don’t mind you picking your nose or suddenly swearing. Don’t forget we are the normal now – you are in the minority. You must make yourself fit however unnatural it is for you.
You don’t like it?
Shame. I’ll get my hammer and make you fit.
Bash. Bash. Bash. Okay so it hurts. You’ll thank me for it later.
Only I wouldn’t do that, would I? I have an enormous sense of justice.
You just do what feels right, love.
Must dash I need to cut the itchy label out of my jeans.
Little makes me happier than a coming together of minds: a shared joke, a joint appreciation or an understanding. Despite occasional appearances to the contrary, I am acutely curious and passionate about others and actually thrive on human interaction, so other people’s responses are crucial to me.
This is why not much can upset me more than feeling I’ve been misunderstood.
It leaves me feeling wounded and shaky like a frightened animal.
It’s partly an almighty disappointment with other human beings: that no one – even the best people – will ever completely understand another person, combined with a sense that yet again I’ve failed at human connection. I spend some time wondering whether it’s my fault or someone else’s. I pick myself up again and again and wonder why I’m getting it so wrong and why I care so much.
Sometimes I think it’s because the words tumble out too fast. There were too many on my lips and they’ve come all at once. People see those words and make their own sense of them and suddenly I’ve said something I haven’t said. Or I haven’t managed to say something I wanted too. I’m upset that someone doesn’t know me enough to know that I can’t possibly have meant what they thought I meant, but also upset that I’ve failed to make myself clear.
This kind of human error is a big heartbreaker. It causes a kind of distress and a tension on already frayed threads and loose connections with what should be ordinary, straightforward social behaviour.
Some days I fail repeatedly and probably should just give up, stop digging and stop expecting. But the message that today was not a good day to communicate is delayed, and all too often and all too late I wish I’d stayed hidden.
There’s a misconception that people with Asperger’s don’t care overly about others’ feelings but it’s far from the truth. We care so much, that to think we’ve got it wrong is often almost too much to bear. And so, of course, that means it’s easier and safer to give it all a miss now and again and save the pain of fluffing it all up yet again. I would bet a large sum of money that people with autism are far more aware of and affected by other people’s feelings than anyone gives them credit for.
Constantly trying to figure out who wants what from you and how best to avoid failure is exhausting and distressing, and we often get it wrong. That’s why I think people like me find it easier to be alone. Not because we don’t care but because we care beyond anything we are capable of dealing with.
I’ve taken last night’s thoughts from my blipfoto daily photo journal and put them in here:
Things have been a bit slow.
I think it’s probably the fallout from Monday’s assessment. Yesterday I had a headache all day and today I’ve had a stomach ache all day.
I was expecting some sort of emotional and physical reaction while I recovered from the stress and anxiety pre-assessment, and my reaction to the psychologist’s feedback post-assessment.
Even though it was what I’d been preparing myself for, it’s an awful lot to take in.
After all it’s only 2 months since I started contemplating the likelihood that I have Asperger’s.
The last 2 days I have been churning with memories of school days and wondering how much better things could have been had I been diagnosed as a child (obviously not possible in the 1970s and 1980s). My grades dropped and dropped and dropped, the enthusiasm of my teachers dropped and dropped and dropped, and my ability to be accepted for who I was by my peers dropped and dropped and dropped.
The psychologist said I did incredibly well in the tests. She said even when I said I wasn’t sure and said I was guessing I was getting things right. She said I was in the top 2% intelligence-wise. She looked through my school reports from the age of 5, and when she got to my exam results she was surprised. She said she was expecting much better. But I’d given up. I think I started not bothering at about 10 years old but was always hoping things would get better. Only they got worse. I gradually convinced myself I wasn’t very clever after all.
I’ve been thinking about the girl who bullied me at secondary school. And the girls who participated in her taunting. What if I’d been protected from that because of my vulnerabilities? What if the teachers had known why I was so quiet, why I had to be so quiet? Why I had to look down to listen. Why I couldn’t bear to stay at school in the lunch hour. Why I struggled to organise myself. Why I often wasn’t sure how to behave or how to fit in or what to wear.
I know that we are the sum of our struggles and not just our achievements and they make us who were are but I would like to take away some of the pain from my past.
School was a big pile of shitty crap for me. The years after school were difficult too as I struggled to find my way in the world and couldn’t understand what was expected of me.
All I can do is write about my experiences and hope that things are improving for today’s young people with the higher functioning, less easy to spot autistic spectrum conditions because some sort of acceptance in ourselves and from everyone around us can make all the difference in the world.
It was tough being a teenager. It was very, very, very, very tough. I never knew just why it was so extraspecially tough until now and I want to go back in time and rescue that fragile, vulnerable young girl and tell her she’s alright. I want to tell her school teachers and her school mates that she’s alright. I want to tell everyone who misunderstood her that she didn’t have a nasty bone in her body, that she’s a really loving, forgiving person and she deserved better, kinder and more thoughtful.
I want to tell everyone who fills in the missing information about someone they don’t understand with nonsense they’ve made up in their own head to be less shallow, and if needs be just accept that they don’t understand.
We were talking about meltdowns in my assessment on Monday and I said how I’ve managed to avoid many all my life through fear of others and my strong awareness of appropriate behaviour. But that is sure to be the reason I suffered with stomach aches all my life. When I was young I would wait until I could go to bed and cry or I would rip things. After school I would often run home and I think the physical exertion helped. But the feeling of needing to explode doesn’t go away.
As an adult with responsibilities I would say for me it’s got harder. There’s an urge to smash something or scream or run away, and Richard was telling the psychologist how I often sink my teeth into my hand when I’m teetering on the edge. She called this self-harming and I hadn’t thought of it like that before.
When Richard came home on Saturday he found me pacing and winding up. I don’t call it winding myself up because I actually feel at the mercy of something beyond my control. I think I’d waited until there was another adult around. I kept saying I don’t know what to do, I don’t know where to go with these feelings, I need to break something or explode somehow. In this case ranting and pacing and then spending time alone in the rain calmed me down eventually but it’s such a horrible place to be when it’s happening.
Holding on and holding back and being calm all day and just keeping going is so tough. I write lists, I make sure I know what’s important and how to feel I’m achieving but there are still days when, despite actually being quite cheerful and the sun shining, there is a strong desire to stop the world turning because I feel I’m not holding on properly. Shouting and yelling and pacing works to a point but it doesn’t make me feel good: it makes me feel sad that it got to that. Having somewhere I could crawl into and curl up in a ball and have a nap would be nice. But I’m the grown-up, the parent, the adult, the responsible one so I keep on fighting and waiting until the the chance to open a valve and release some steam occurs.
It’s hard being an adult with Asperger’s.
It’s hard being a woman with Asperger’s.
But when you’re a wife and mother too the juxtaposition of domestic bliss and contentment against an overloaded brain and sensory system is often impossible to explain.
It’s the morning of my assessment for Asperger’s, and I’m close to cacking my pants (excuse the graphic honesty!). I’m so glad this day has finally come though because these last few weeks of waiting have become more and more fraught as time’s gone on. I’ve had so many restless nights recently and I am mainly being powered by adrenalin and tea. I can’t imagine having to wait the estimated 2 years currently expected through the NHS in our area! (I’m sure it’s just as bad elsewhere) and I feel sure I would bottle out given that much time to worry about it.
I only vaguely know what to expect of today: my psychologist has given me a rough itinerary over the phone – which I was sensible enough to write down, otherwise I would have completely forgotten. But I still don’t know what it will involve or how things will go. That uncertainty is really scary.
I’ve swung back and forth over the last few weeks from thinking there’s an extremely good chance I have the condition known as Asperger’s Syndrome (although no longer a formal clinical diagnosis), and thinking I’m just a bit different, awkward, socially inept. But each time I’ve swung back to the “Yes, of course I am on the spectrum” camp it’s been with renewed vigour. Asperger’s is all about the social hell I experience and the more I’ve read in the last few weeks, the more set in stone my own self-diagnosis is.
But I still want outside, professional confirmation, and I hope so much that it comes today.
For schizophrenia and bipolar disorder there is medication, for depression and general anxiety disorder there is counselling and/or therapy and/or medication and/or self-help guidance. But what is needed for autistic spectrum syndrome is acceptance and understanding. It’s not about a label for label’s sake, it’s also about ruling out the other things and that includes ruling out a neuro-typical brain. It’s an explanation. An answer.
I’ve not really prepared myself for disappointment today. I hope it doesn’t come.
We’re about halfway through and I’ve escaped for a wee. I was thrilled that the psychologist turned up in exactly the kind of car I was picturing she would have – and in the same lovely blue I had imagined. I’ve decided it’s a good omen. The first hour Richard was required to sit in and speak honestly about what a mess his wife is. I don’t think he enjoyed it too much but he seemed to be very helpful.
It’s all over and I’ve left the room while she summarizes all the tests and questions. I think I know how this is going to go now. She’s let a couple of things slip out, like nodding at the information about me playing schools as a child. She said it’s a classic thing that girls with Asperger’s do. I haven’t managed to eat yet today and feel very light-headed.
It’s all over. I’ve been given the confirmation I was looking for. I am indeed on the autistic spectrum. The psychologist is calling it Asperger’s one minute and high-functioning Autism the next. But the main thing is I have that official, professional corroboration I so wanted. She left at about 3pm and I took a few minutes to text and message a few people who I thought deserved to hear it first (apart from my sister in Australia, who I didn’t want to disturb in the middle of the night), and then Richard and I went for a walk on the beach with the dog.
Then I phoned my mum, and now I’m sitting here thinking about it all.
There’s a really important message in all this. I’ve read books by autistic people, books by autistic experts who themselves are not autistic. There’s a lot of talk about coping. I’ve had a good long think about whether I would want a diagnosis if I was confident and coping.
Well if I was confident and coping I wouldn’t have gone looking for a diagnosis. That’s the bottom line.
The psychologist said something similar. She said I have unusual habits, I have some big differences, but differences in themselves are not enough to call it a problem. It’s a problem when it’s a problem. And that’s the thing: it has been a problem. Well, not knowing has been a problem. Social stuff isn’t just difficult, it is like a living nightmare, things frighten me to the point of illhealth. I’ve spent my life trying so hard to be conventional, sociable, an ideal wife and mother, and it has worn me down so so badly. I am a human being but I am not the human being that other human beings are. I have some bits of my brain put together differently and that means I am not like other people. I’m not just different I’m Different.
We talked about what this knowledge would mean for the children, and agreed that knowing it was something genetic would help them to understand any problems they might encounter themselves. We agreed they may never necessarily need a diagnosis themselves but it might be some help and even some comfort to know that when seemingly normal everyday things get tricky or seem ridiculously difficult there may be an explanation to fall back on. It may just be a help to say ‘I’m doing okay considering what I’m coping with.’ There may never be a reason for any of my children to consider autism for themselves but I hope the fact that I was brave enough to go through today will mean something to them if they need it.
The psychologist looked at us after listening to us talk about our life and said ‘You’ve done jolly well to have coped with everything you have coped with.’ And it’s true. Especially now knowing why it was all so bloody hard for me. But at some point I realised I wasn’t coping and I was exhausted from trying.
The psychologist also asked me if I was relieved. I said I was. She totally understood my reasons for wanting an assessment and saw that some of my traits have been causing me distress because I didn’t understand them and was trying to hide them. I said I spend every day worrying how much my behaviour impacts negatively on other people and it will help me that other people know I am struggling against the odds.
I’d quite like those close to me to be proud of me when they think about just what I’ve put myself through over the years. And if they’re not proud I hope at least they can see how much happier this makes me and be happy for me too. Now, just knowing that I was made this way makes me feel okay about myself, and is going to help me rearrange my thinking. I’m going to be calmer and more accepting of myself. You’ll see.
Now I can think about what I want to try at, what’s worth trying at, and what I can happily ditch.
Thank you so much to the friend who introduced me to the idea that I might be on the autistic spectrum. It did always look like a country I wanted to go and visit.
And if another bloody person mentions boxes I’ll bloody deck them. Nobody puts Rachel in a box. I’ve never felt less boxy than I do today. I feel free. So nerr.
4 days to go.
I’m worrying about it a lot. It’s now become a permanent presence at the front of my mind. I’m even thinking about what I will wear – in a ‘Will that give me away as autistic?’ kind of way. I’m worrying about what my husband will say about me, what the notes my mother has written will or won’t say about me and what she’s left out, what my home will say about me, whether I will perform too much like a neurotypical person in some of the tests and not convince the psychologist I have an atypical brain. After all I have spent 44 years training myself to understand other people and blend in.
This assessment is an enormous thing for me, and my brain is thinking about my brain constantly, and it’s all very weird and difficult.
I’m so preoccupied by the event I can’t function. I’m opening cupboards and forgetting what I wanted from there in only a split second, I’m asking my husband the same question twice in five minutes – and still forgetting the answer, I’m walking around and around in circles wondering what I’m doing. And I’m tired and I’m grumpy. I’m jiggling my jaw side-to-side rhythmically so that my teeth chatter more than ever and, in an attempt to stop myself doing that because I’m worried I’m wearing down my teeth, I’m biting down hard on my tongue. I’m worrying about silly things too – really small things – as if it’s unfair to completely blame the forthcoming assessment for everything I feel.
My sensory overload problems are at an all time high right now and I can only cope with one noise at a time. I’m closing my eyes or telling people to shut up and feeling like a bad person. We watched Monkey Planet last night and I couldn’t bear to watch gibbons swinging in the trees because the movement was making my eyeballs ache and my head whoosh.
I’ve been thinking a lot about anxiety and the amygdala in my brain recently. It seems to me there are two main different kinds of anxiety in people: the anxiety triggered by stress or an event or ongoing life problems of one kind or another, and the anxiety that some of us are born with because we have an enlarged amygdala. I think I have the second kind. I think the first kind might be trained out or relieved with a combination of Cognitive Behavioural Therapy or counselling and/or life changes. But the second kind is something that we need to learn to live with and accept. When I went for my first and only CBT session I realised that they weren’t going to be able to help me. I am anxious always about everything – everything – and always have been. There was no trigger, there is no better time. It’s not all in my mind and something I can train myself out of. I believe I was born with it. It’s no use telling me I have nothing to worry about or something’s not going to be as bad as I think, because I do and it will. My fear is big and all I can do is know that I have big fear and console myself that that is the reason I worry. It helps, believe it or not.
Why can’t my brain be more like my body?
I like to do yoga (alone at home) and take walks. I can see how not feeling like exercising but doing it anyway actually works. I feel stronger, I feel glad I did it and it’s easier next time. I get a Can Do response from building up my physical strength.
But with my brain there’s no Can Do response. I push myself to do things I don’t want to do and it never gets any easier. I don’t feel stronger: I feel weaker. I feel less inclined to do things again. As I’ve got older I’ve become more anxious, more loathe to do things with other people, and generally more tired of trying. I don’t have unrealistic fear or paranoid fear: I fear normal everyday life and my own shoddy attempts to deal with each day, each activity, each event. I know how things will go, I’m not kidding myself, but I still fear them. I’m not thinking of lions or earthquakes or conspiracies. I believe I have wired fear not weird fear.
Here’s me in an imaginary CBT session:
‘You’re on your own at home. What’s the worst that can happen?’
‘The doorbell rings.’
‘Really? Why is that bad?’
‘Because I hate the sound of the doorbell.’
‘Because it means someone’s at the door.’
‘Okay… So the doorbell rings. What’s the worst that can happen now?’
‘I’ll have to answer it.’
‘So. You answer the door. Now what’s the worst that can happen?’
‘I’ll have to see someone and talk to them.’
‘And then I’ll be pissed off and spend the rest of the day hoping it doesn’t happen again.’
‘And if the doorbell doesn’t ring?’
‘The phone might ring.’
‘Why is that bad?’
‘Because it means someone’s on the other end.’
‘Okay… So the phone rings. What’s the worst that can happen now?’
‘I’ll have to answer it.’
‘I see where this is going… And if there’s no one phoning or ringing the doorbell?’
‘Maybe I’ll have to leave the house for some reason.’
‘And if you do? What’s the worst that can happen?’
‘I’ll have to see someone and talk to them.’
‘And then you’ll be “pissed off and spend the rest of the day hoping it doesn’t happen again”?’
‘So, imagine you’ve answered the door, answered the phone, been for a walk, dealt with people. It’s the end of the day. Don’t you feel better?’
‘No. That sounds like a terrible day. All those people will have stopped me from doing things I wanted to do.’
‘You worry too much.’
And my biggest fear about Monday?
It’s that I won’t be told I have a brain wired in a way that explains or accounts for most or all of my behaviours. I want to be told ‘Yes, Rachel. Your brain is wired differently. There’s no way you can behave any other way. Or pushing yourself to behave differently is difficult for you. This is the way you are made. Carry on with being you and be happy.’
My husband’s said, ‘Well I can tell you that.’
Which is the best thing anyone can say. Ever.
I’m still nervous as hell though. This is my life we’re dealing with.
It’s difficult to be honest about how you’d rather sit a little way away from someone because their body heat is overlapping into your personal space, their food breath is wafting up your nostrils, their laundry should have been rinsed more thoroughly (‘Is that a biological 2-in-1 she uses?’)
It’s not easy to be honest about how the sudden hug you got that threw you momentarily and made you want to pull away was welcome but you should have been asked first. How you need warning even for the very nicest of things.
It’s embarrassing to explain honestly that you struggled to get dressed this morning because your clothes felt like they touched your skin too much after a shower. You’d rather sit naked on the floor alone for an hour and maybe just write something or read something and get dressed a couple of hours later than everyone else.
It’s almost too complicated to explain honestly how you really like someone’s face and eyes and company but if you didn’t have to look at them and could have a conversation from behind the sofa or in the dark or perhaps by email you’d be able to get your words in the right order and be more confident.
It’s impossible to be honest about how you hid all day just because being yourself is something you are a little bit ashamed of, embarrassed about, and yet you need to be yourself so you don’t go mad.
The honest truth is there if anyone wants it. But you don’t share it because you know no one really wants that kind of honesty.
They see dysfunction
I see this function
They see broken and disorganised, faulty, misfit, loner
I see a sculpted shape, fashioned for peaceful solitude
They see problems and hurdles, solutions and fixes
I see happiness in difference and pain in affectation
They see a channel to bring me into the light
I see a tunnel to drive me into darkness
They see a fallen fledgling to bring back to the flock
I see a solo songbird out of pace with the starlings
They see damaged wings to realign
I see a valid feather not a shape shifter
I hate waiting for anything. When I was waiting in line for immunisations at school, I passed out because the waiting was too much for me. The injection itself was nothing.
I’m notoriously good at seeming like I’ve forgotten about things – particularly important things. It’s usually not memory loss but a coping strategy I’ve unintentionally developed over the years to keep me from living in a kind of permanent panic about any forthcoming events.
I block them before they block me, I guess. I don’t want to be crippled by the impending stress they will be sure to cause me. I’ve even stopped entering things on the kitchen calendar if I don’t want to think about them, and my husband has learned not to talk about things that I’m likely to be dreading.
But this blocking of events and stopping myself thinking about them in specific detail only does so much. It takes away actualities and can often stop me running a preview in my mind repeatedly of how things might go; the denial helps me to stay in the here and now but it doesn’t take away the fear, the uneasiness and the apprehension. My guts started rolling the minute plans were made, and despite trying to carry on I am on edge and getting edgier the nearer we get to an event. It seems I can get wound up about something while thinking of entirely different things and concentrating on something I usually enjoy.
It’s 7 weeks since I first started my investigation into my possible Asperger’s assessment and 6 weeks since I began discussing it with my family. It’s only 5 weeks since I emailed all the psychologists I could find in my part of the country, and only 4 weeks since I booked my appointment for my assessment. It’s not been long at all but it seems like longer. A lot longer. It feels like a kind of sentence. I have been trapped in a weird bubble where my head is not the same, my communication with others is not the same and yet I am carrying on as usual. Well, trying to. Unfortunately I’m not really quite here. I am locked in a kind of pre-assessment hell that no one else can share. And I know that whatever happens after it – whether it be the outcome I want or the outcome I don’t – it will be difficult. There will have to be processing and adjustment whatever the psychologist says. I not terrified, I’m not scared, but I am nervous as hell, worried about the whole day, and however much I concentrate on other things and block, block, block, the sense of impeding somethingorother is always there.
I’m drinking too much wine at night. I’m eating too much. I’m biting my nails more than ever, and I’m bumping into things more than ever as if the house has suddenly shrunk around me. I feel each and every day is picking on me and that inanimate objects are playing practical jokes on me. I’ve put on half a stone and I’m waking up frightened of beginning each new day.
I keep asking myself why I’m putting myself through this. Was life easier just being a social misfit with a growing list of concerns about the way I deal with life? Well maybe the not waiting for an assessment bit was easier but I need answers. And the answers I’m finding on every page of every book I read about autism are looking increasingly like the right ones.
Cynthia Kim, in I Think I Might Be Autistic, writes:
“…an ASD diagnosis as an adult … changes everything and at the same time I’m much the same person I will always be. The difference is now I’m struggling less with myself.
The self-knowledge that I’ve gained through the discovery and diagnosis process has helped me accept myself as I am and identify the types of changes I’d like to make in my life.”
And that’s exactly why I’m doing this.
Cynthia Kim can be found online here: http://musingsofanaspie.com/ She’s interesting to me because she was diagnosed at the age of 42, and I am 44.
Unfortunately as the day draws ever nearer, my fear grows that a psychologist will disagree with my self-diagnosis, and that worries me immensely. Then what?
I’m waking up in the middle of the night and thinking about how I’m rearranging my head, my history, my daily life, my future. The Asperger’s label is my golden ticket to make sense of it all. What if I don’t get the golden ticket?
Fourteen days to go, and counting. Although I’m nearly through today so I guess I can call that thirteen days and fourteen nights now.
This afternoon I said to my husband, Richard, ‘I miss you.’ And I do. I miss not being so completely wrapped up in this bubble.
I can’t wait until it’s all over.
I’m thinking about my response to something you said. I have many responses to choose from and I’m not sure which I should use. First I want to be sure I’ve made sense of what you’ve said. There’s a word you used that might mean something else and I want to be sure I’ve understood you the way you want to be understood. If I don’t know you very well that might take me a few extra seconds. The conversation has made me think of a hundred different things that may or may not be relevant. I need to filter those. What I say needs to be appropriate to the moment.
Which response should I use and how will I convey my answer? If you were someone else I would use a different language – different sets of words.
I finally decide what the best response should be. But it’s too late. I’m too slow. Someone else has spoken. The conversation is over. You’ve gone. It’s the middle of the night, the next day, the next week, months later, years later.
And this is what you saw:
She stares at me strangely for a second. She looks down. She looks at the room around me. She says nothing. Did I offend her? Did she not understand me? Is she stupid? She fidgets rudely as someone else talks.
Or maybe this was one of those times where I had to give an immediate response: ready or not. Maybe I blurted out the first unconsidered words and tried to catch them as they escaped: ridiculous, thoughtless and fancy-free, inappropriate and nonsensical.
Because that wasn’t how I felt at all.
I’ll write down what I mean. How I feel.
I’ll think. I’ll edit. I’ll read through and rewrite the bits that aren’t true.
And you may never know.
But someone will.
At least, I hope so.
I burnt my toast again this morning. I’ve decided that making toast is boring and too simple and that’s why I deviate. In fact it’s so boring that I’ve just deviated from writing about it into a little exploration of the word “burnt”…
Apparently “Burned is the older form. Burnt came about during a period in the 16th through 18th centuries in which there was a trend toward replacing -ed endings with -t in words where -ed was no longer pronounced as a separate syllable. Later, British writers continued to favor [favour! This is clearly American…] the newer -t forms for a handful of verbs, while North Americans went back to the more traditional -ed forms.”
~ courtesy of Grammarist.com: http://grammarist.com/usage/burned-burnt/
Last night I made a fish pie plus a vegetarian option for our eldest daughter. I juggled (or should that be “jugglt”?) boiling eggs, chopping onions, making a white sauce, skinning and chopping salmon and haddock, scrubbing, chopping and parboiling potatoes, etc, etc, etc… I made 2 separate dishes synchronously. I used a recipe I’d found on the Internet and I altered it to suit us. I concentrated on doing this and only this for an hour and that’s why it all came together. And it was yummy.
See: I can cook. I can do concentration. I enjoy things I can throw myself into, that I can do alone, that take the whole of me. I am designed for projects, for research, for periods of intensity.
I can’t stand at a toaster and wait. Not even for 30-60 seconds. I have to wander off.
It’s intensity I need. I can’t be doing with faffy, lightweight, ordinary stuff. I get bored.
Unfortunately for the rest of my family, you are not permitted to talk to me or get in my way while I am in the intensity zone, and after that intensity I am burnt out and need to fizz quietly in the corner like an extinguished flame.
It’s a fact that many autistic people struggle to cope with normal every day things. It’s not the same things in the same way every day and it’s not the same for everyone. Just like neuro-typical people we are all very different from each other and have our own likes and dislikes, problems and skills. But there is a suggestion in a lot of research that some brains have evolved this way over time because the human race needs brains like ours.
We are the chosen ones.
We are the toast burners.
Cherish our special skills.
I think the reason I’m not skinny anymore is other people have reminded me to eat. You have to have meals when you have a partner or a family. When I first tried to live on my own I literally didn’t eat some days. Then I put it down to being on a stupidly low wage and not budgeting properly. But in truth it was largely about organisation and prioritising. (A living wage would have been nice though…)
Sure I get hunger pangs when I’m on my own; I put toast in the toaster. But then I walk away and find things to do while I’m waiting for the toaster to pop.
Just now I decided to load the washing machine while waiting for my toast. I didn’t have enough for a full load so I went upstairs to find some more things to wash. The toaster popped. I went into our youngest daughter’s room and looked for underwear, I went into the bathroom, picked up the bathmat and hung it over the radiator. I saw that the toilet needed cleaning. Again. I cleaned the toilet, the shower, the basin. Half an hour later my toast is still in the toaster.
I’ve pushed it back down to reheat it and walked away again.
I’m going to heat the rice milk for my coffee in the microwave in a minute. And then I’ll heat it up again in about five minutes.
Earlier I had set myself the task of trying to get in and out of the shower and get dressed and be downstairs in half an hour. After 24 minutes I remembered to get in the shower. After an hour I was trying to work out what took me so long.
Some days I am faster. Some days I am slower. Some days I have to rely on adrenalin and panic to get me through an unavoidable deadline or a necessary timescale, but that leaves me feeling unwell. Some days it’s all really funny. Some days I want to cry at the missing time.
Neuro-typical people say they struggle too. But they don’t struggle the way AS people struggle. If they did they would be more understanding.
I suppose one way to describe it would be to say it’s like only doing things because you think you should but really there’s something else – something stronger – operating against what you’re trying to do all the time.
And I mean ALL. THE. TIME.
The world is unbelievably distracting, my mind is unbelievably distracting. I’m not always going where the compass points. All points are the magnetic North with me. You can’t control this ship.
Where was I?
Ah yes: Breakfast.
(It’s 11am already)
PS Don’t feel sorry for me. I’m getting an awful lot of sympathy recently which is nice and heartwarming but realising I’ve been struggling for a reason and can now be honest about my exhausting fight to be normal for so many years is actually quite brilliant. So be happy for me if you want to feel anything. :)
PPS You should see my toast…
Oh how I laughed. How I played.
How I drank. How I obeyed.
I learnt to cook. I learnt to iron.
I learnt to drive. I pretended to survive.
With my cloths and my spray, I wiped the ‘Table, surfaces, sink, cooker, floor. Table surfaces, sink, cooker, floor.’
With the vacuum cleaner I went ‘Dining room, kitchen, sitting room, hall, stairs. Dining room, kitchen, sitting room hall, stairs’
I picked up the ‘Shoes, coats, washing, rubbish, recycling. Shoes, coats, washing, rubbish, recycling.’
In the bathroom I dealt with the ‘Dirty clothes, towels, basin, bath, toilet. Dirty clothes, towels, basin, bath, toilet.’
At each turn I reprogrammed.
With each task finished, I changed the list. Always five things, always repeated.
Keep the focus, keep on course.
Don’t stop. Don’t talk.
Don’t answer the phone. To stop is to fail.
A changed route means anger and confusion. You’ll never pick up and start again. You’ll lose the power to carry on.
Keep on, keep on, keep on, keep on, keep on.
Keep up, keep up, keep up, keep up, keep up.
Keep the rhythm. Keep the pace. Keep up appearances
You have to go out they say. People who don’t go out are depressed, are hermits, are weirdos, are creepy loners.
A drink. Another drink, another and another.
‘Let’s go home.’
‘Let’s stay out.’
‘Drinks at ours!’
Maybe next time?
Please say there won’t be a next time.
No. More. Words.
I can’t cope.
I’ll be that depressed, hermit, weirdo, creepy loner.
I’ll make tea. I’ll sit down. I’ll look at my photos. I’ll write some words. I’ll write a gardening list.
I’ll find me. I’ll find peace. I’ll stop counting in fives.
I didn’t change.
I fooled you all.
For a while.
That was all.
When I like you, I really like you.
At first I keep you at arm’s length, and make sure you’re sure and I’m sure.
I slowly reveal little snippets of myself: a bit of weird here, a bit of mad there.
I wait to see if you back away – I give you a “cooling off period”. I don’t like to impose myself on people. You must make the moves: you must let me know you like me.
You see I can’t handle the grief of losing a friend.
If you’re still there, I start to care about you. I begin the terrifying journey of starting to trust you. I only have so much trust and it’s hard to give it away. I need to know you can cope with the power of my affection.
It takes a long time for me to make a friend and I lose many along the way, but those who stay are special and I think about you and hope you will always be there.
I don’t always know what I can give except my deepest loyalty, the truth and genuine affection.
Thank you to those who are still there allowing me to like you and love you in my fervent way.
You have my trust.
I circle my forefinger over my thumbnail and absent-mindedly dig the nail into the finger as some sort of response. There’s a continuous ongoing conversation between bodyparts and I don’t know who’s in control.
The wind is cold and unfriendly today. I feel its hostility as it antagonistically flicks my hair into my face, into my eyes. I don’t like it. I feel I am fighting to stay put.
My throat stings a little from a bonfire perhaps faraway, perhaps no longer burning. It hangs in the air. I’m nauseous and irritated.
The seagull on the roof thinks it’s funny. He’s laughing at me. The sparrows bicker in the hedge.
The voice in my head is reminding me about the grocery delivery still to come, the fridge to clear out, the washing to hang out, the list of gardening jobs to be done. My heart pumps a little too fast and my stomach reacts to the rush. I breathe out heavily to blow away the stress bearing down on me because of my own demands on myself, and my confusion about what is most important.
When do I walk the dog? Do I have time for/ do I bother with lunch?
I’ve done nothing again and yet I’m never doing nothing. I sit and stare at the empty page where I was supposed to write a list. And yet it’s not empty: it’s patterned and creased and dirtied by gardener’s hands.
I wish everything would stop and stay stopped long enough so I can find peace. Deep down I know I am quietly out of control and I bite my tongue hard.
Maybe I look still.
Still would be nice.
It’s now 27 days until my assessment and I’m not sleeping well or getting through simple tasks in the day. I’m visualising the assessment day and how I will handle it (badly – but that’s a whole other blogpost!), and I’m cultivating a new set of fears.
Fear Number 1 is that the psychologist will not find enough evidence of Asperger’s Syndrome and will say that I have some typical traits but not enough and tell me I have social anxiety disorder instead.
In the last few years I’ve gone from thinking there’s probably autism in my family’s genes but that I don’t display the traits myself, to thinking more recently that I possibly do have some traits, to now realising I have many traits and I just wasn’t looking in the right places (this was partly due to everything I’d read being about males with AS conditions). In the past month I have become 100% certain that I struggle with an autistic spectrum condition – probably Asperger’s, but I worry that if I had so much trouble recognising it, it may not be fully recognised by someone else.
What if the people I need the support from take the psychologist’s word over mine? What if I have to go back to pushing myself to the point of insanity to be someone I know I’m not? It would be like the light at the end of the tunnel being extinguished and me being trapped in darkness again. I don’t want to go back there.
I keep searching for an analogy so that people outside my head can understand how this feels. The only thing I can think of is imagine being gay and having to stay married to someone of the opposite sex. You’d want someone to say you don’t have to be someone you’re not. It’s clear you were not made that way. But what if you weren’t allowed to be gay? We all need to be allowed to be who we are.
Of course I know that anyone worth their salt will reach the correct conclusion.
Fear number 2 is that with an official autistic spectrum label I will now be faced with Asperger’s as an excuse. Not for me but for other people. What if my opinions and emotions are no longer seen as legitimate? What if people misunderstand me and instead of getting to the truth and letting me explain they shrug and release a small puff of air and make a mental note that it’s just my Asperger’s: I can’t help it? Will my highly emotive arguments in the future be dismissed as a ranting incompetent brain? Will people’s own failure to understand me conveniently become Rachel’s inability to grasp other people’s feelings? ‘Oh don’t worry about her – she’s autistic, you know? She doesn’t know she’s hurting your feelings.’
It genuinely upsets the crap out of me that autistic people are so often seen as self-centred, empathy-void machines (that’s another whole other blog post!). In my opinion it’s not true and it’s wrongly depicted by those who observe but don’t live in the AS world. My empathy bucket is flipping massive, I’ve have you know. I protect people from things I think will hurt them all the time. I also take on a lot of pain from observing other people, and I physically suffer for it. I may not always say and do the right things but I am thinking of other people all the time.
Fear number 3 is about others. I’m concerned for my loved ones. How will they cope? Will my husband be scared to ask me to do anything remotely challenging again? Will he try to absorb too much stress to protect me? Will people worry that they can’t say certain things to me anymore? Will my family worry that being themselves will impact negatively on me? Will they be embarrassed by the label? Will they say they preferred things as they were? Or will they do nothing and I’ll still have to pretend? I don’t want to use Asperger’s as an excuse for bad behaviour and I don’t want my family confused about what is unreasonable and what is excusable but there are times when even I don’t know how much of a git I’m being. Or how much of a git I’m not being!
It’s daunting and it’s filling up my head and I know I’ve not been great company recently, but it’s not long now.
All in all I know this is the right thing to do – it’s really important to me.
(And we’re all gits sometimes anyway. With or without excuses)
What’s become clear to me in the last few days is how this is all about coping, and how each individual person wants or needs to cope. If a person with an AS condition has ongoing support and understanding from someone close then the chances of coping are much better. A greater need to rest is a prime example and having a family/partner who accepts that need – and not just accepts it but understands it. It’s important when others rely on you that you should be understood.
My problems have caused a lot of anger. Why on earth should one half of team parent in the Carter house be rushing around while the other is lying on the sofa? I’ve struggled for years with the enormous guilt my fatigue has caused me. So I don’t allow myself to rest and I’m regularly irritable. I cope less and less; I drop things, I bang my head, I forget things. I feel gradually more and more overwhelmed and out-of-control. I begin to rage or cry. When there is hidden exhaustion and confused feelings things will surface eventually. The wrong thing or the wrong person will suffer. These feelings must be coming from somewhere therefore it must be the current situation that is the problem. And the current situation gets the blame.
If the person with an AS condition has fewer or less debilitating traits then the chances of them coping are much greater. The likelihood of coping for some of us hinges on an assessment but for others who can self-diagnose or cope with their own goals or have enough understanding then the official assessment/diagnosis might be just something else to put themselves through. I would guess that doesn’t stay the same for some though. The need for diagnosis and support probably changes. Right now the things I can/do or can’t/don’t do that upset me about myself need ordering somehow. I’m not coping and never have coped with my guilt and my failings. I’ve never understood just why I find so many things so bloody hard. I care about why and I care about not fitting. I want to explain myself to my family and not just in an “I’ve read a book so it must be right” kind of way. I want someone from outside to listen and tell me that I’m okay – because the non AS version of me is simply not okay – and help me believe I don’t have to be something I’m not. I don’t think I can do this on my own. No, I know I can’t. And that’s the difference between me and the people who don’t want a label: I’ve had so many people say recently ‘I struggle with this too’ ‘I struggle with that too’ and they point out that they don’t need a label and they are happy with their individuality and they say they’re coping or that those traits don’t make someone on the autistic spectrum. Well that’s fine and that’s them (unless they’re kidding themselves!). Maybe they have some AS traits, maybe they don’t. Maybe they want to investigate them, maybe they don’t. Maybe being happy with yourself and getting on with being you is the key to coping.
But I’d like a little bit of guidance because I’m not getting on with being me. And I think a calmer version of me who isn’t at war with everything will be better for me to live with. I do actually want to change in some ways. There’s a slightly tweaked version of me in there somewhere that is waiting.
I don’t want the label plastered across my chest in massive letters every day for all to see, I want it tucked into my pocket for me to rub my fingers over every day and find some comfort.
In my head are hundreds of things I want to do. I can’t prioritise or order them. I can’t even stick to my own lists.
You can often see me walking in and out, up and down, round and round as if I am trapped in a circular cage. This is because I have visualised everything I need to do and everything is calling to me at once.
When I finally choose a direction it is often the wrong one.
You’ve probably lost count of the times I’ve told you I’m struggling/having a bad patch/need a break/not coping/want to hide in a dark corner.
What you won’t know is I’ve lost count of the times I haven’t told you because I can’t bear to hear myself say it, to make it real, to do this to you, to risk losing you.
A pain rises from my chest, through my throat into my tearducts. The longer and harder I try to stop it the stronger it becomes.
I try to find a space to release the pain.
I’m fighting. Always fighting. But nobody knows.
All around are the battles I’ve lost. Battles I didn’t want to fight.
Maybe some day we can talk about the ones I’ve won and you can be proud of me.
So that it – it’s happening: in April I will be having an autistic spectrum assessment. I don’t want to wait the estimated two years for a GP referral (that’s assuming my GP would even give me a referral), so I’ve booked a visit from a psychologist who will come and spend the day with me in a month’s time. It will cost me, but not anywhere near as much as one of the quotes I got from a clinical psychologist for about £4,000.
I don’t need help at work (I can’t hold down a job and that’s that as far as I’m concerned) and I don’t need benefits, I don’t need any special concessions from society but I do need some personal help, so for me an educational psychologist’s assessment is perfect. There is still always the chance she will disagree with me and say I don’t have Asperger’s but I do totally believe she will agree that I don’t have a typical brain and that some of my behaviours and problems fit onto the umbrella of autistic spectrum conditions somewhere.
I’ve already filled in some forms, which have held me trapped in a strange kind of self-analysis bubble for the last couple of weeks. Much of it has been quite useful and made me feel a lot better about myself although some of the searching for an honest version of myself is a bit distressing. I really do do things that autistic people do! I really do have extreme ways of reacting to things. A lot of things I’ve pretended are choices over the years are not choices but things that have been imposed or self-imposed because I have no choice but to escape the onslaught of unbearable stimuli in normal society. And, despite years of trying very very hard, I’m not normal in the way 99% of people define normal. Maybe things would have been different if I’d tackled all this years ago and help had been available… who knows… But there’s also humour too: plenty of funny things about myself that I knew about but didn’t know why. It turns out “nose of a dog” for instance – that Richard calls me because of my overwhelmingly strong sense of smell is an autistic trait. Screaming with frustration because ‘the effing dustpan and brush are not where I effing left them, and I hate it when people move things. I need to know things are where I left them!’ is also an autistic trait. My obsessions with symmetry and balance and straightening things are to do with the way I visually try to order things, and my regular crying at unfairness on the TV – even when ‘it’s just a film, Mum!’ is to do with my over-sensitivity.
A lot of the things I have got supermassivelyangry about over the years are because of being overwhelmed by the world I don’t fit. I don’t know if anyone else around me has noticed but I have noticed that I’ve been less angry recently. I am aware of what is happening and, to a large extent, why. I’m no better at coping with the world and my sensory overload but I am better at coping with myself. Today in the supermarket I knew why the other shoppers were making me feel stressed and I knew why I was walking past things I wanted to buy. I needed space. I needed a bit longer to think than other people. I feel crowded very easily.
In the evenings I still find the combination of family voices and TV sounds too much to bear but I can stand still and calmly say so instead of wondering why everything is deliberately being so awful to me. Knowledge brings an understanding that can give comfort and control and not only self-forgiveness but forgiveness of life and of other people. Other people can’t help being in a different world where colours aren’t so bright and noises aren’t so intense and I must forgive them that! Other people’s lives must be so boring. No wonder they sleep better than I do at night!
Now I’m armed with knowledge about some of my troubles they don’t seem so much like troubles anymore. It’s a bit like worrying that your lawn is blue when all the neighbours’ lawns are green. Well, hey, what do you know: mine was planted with blue seed – there’s no way it could have grown green – I was actually supposed to have a blue lawn! All that worrying for nothing…
But I don’t want other people worrying about my blue lawn or trying to help me make it green, and I don’t want the kids going on about how I should have a green lawn because ‘all the other kids do’ so it’s best they know about my blue seeds too.
Earlier this week, I tried to have a family chat about my forthcoming assessment. Even though I’d mentioned the likelihood that I have Asperger’s to our eldest daughter, and left books lying around and had conversations with my husband Richard when the kids were about, I wasn’t sure what they’d picked up on. And I wasn’t sure overhearing stuff was the best way to find out about things. It’s been difficult to know where or when to start and how much to tell them all.
Dinner was going at its usual crazy pace. The 19-year-old was eating like she was in a race, the 9-year-old was eating like she had a plate of rancid fish in front of her, the TV was on, conversation was disjointed.
‘I’m getting assessed for Asperger’s Syndrome soon. Someone’s coming to the house in a few weeks.’
The 9-year-old wanted to know if she could get assessed too. The 19-year-old finished eating and left the table. The conversation changed.
Oh well. I tried.
I’m in limbo right now. I’ve made my decision that I have Asperger’s but somehow I want that seal of approval from someone who’s been working with the autistic spectrum for years; someone who has a badge that says she knows her stuff and can give a definitive, informed, professional opinion. I think this option should be available to anyone that wants it and not just those of us who can scrape together the eight-hundred-ish pounds needed for an educational psychologist or the thousands of pounds needed for a clinical psychologist. I can only imagine what the two-year wait would do to someone stuck in a more difficult lifestyle than my own.
Richard said a couple of days ago that I should stop over-analysing it all: ‘nothing’s changed,’ he told me, ‘you’re still you.’ But I can’t help wondering what effect all this will have on the family and what it might be easier for me and us to do as a result and what I will have to accept I will always find difficult. There is of course some acceptance of – some reluctant resignation to the fact that I will never totally fulfil the role expected of me in today’s society and I will never be able to stop comparing myself with other women and wondering who I am letting down or holding back or disappointing in my family. It has totally consumed me.
Last night I dreamt of a rainbow umbrella. I was walking in the rain. I don’t like walking in the rain usually. I’ve always thought the elements have it in for me. But in last night’s dream I had a large strong umbrella. It was striped with all the colours of the rainbow and birdcage-shaped so that the spokes went down and over my shoulders instead of out and pointing at people. I felt safe and I felt dry. And best of all I knew I wasn’t bothering anyone.
Here’s a lovely little video by the National Autistic Society, called What is Autism?
And here’s what they say about diagnosis/assessment: Clarification is important because, whatever other condition may also be present, when a child or adult has an autistic spectrum disorder, this has a major effect in determining the needs of the person concerned. Providing the right kind of help and services is essential for the person’s future progress and quality of life. The right diagnosis and the right help also makes life much easier for the person’s family.
I was standing in the supermarket queue today with my husband and our 9-year-old daughter.
I’m a big fan of queues. It’s one of the things I like best about being British. Queuing is the right and fair thing to do and we usually do it well. A couple of weeks ago when I was standing at the fish counter being all polite and patient with my trolley, a late-middle-aged woman walked right in front of me and got herself served before me. I was furious. I’m still drafting a letter to my MP in my head demanding that all queue jumpers be deported regardless of age. Seriously though, if we suddenly stopped queuing I wouldn’t cope. It’s one of those social rules I get and follow easily.
But getting back to today: While we were waiting in the checkout queue, I thought about my new awareness of my difference. I had a good look at everyone around me and I’m pretty sure no one but me was standing with their shoulders all sort of squidged up, and a bit shruggy and self-protective with their arms pulled in stiffly by their sides. Everyone else’s shoulders seemed to be down and rounded with loose arms. Is this what it’s going to be like? I thought. Am I going to keep thinking about how I’m different from everyone around me now?
Already this morning I had thought about my overreaction to the empty almond butter jar: “WHAT AM I GOING TO PUT ON MY TOAST NOW?!?!”
That’s because I have Asperger’s?
I don’t know.
I had also thought about how Mum always says how I cried to be left alone as a baby, and was the only one who just wanted to sleep, whereas my sisters cried for attention.
That’s because I have Asperger’s?
I don’t know.
In the car on the way to the supermarket, I had to close my eyes and shut out one of the stimuli making an assault on my senses. The radio, our daughter’s incessant chatting, the movement of the vehicle, the bump of the gear changes: I felt exhausted.
That’s because I have Asperger’s?
I don’t know.
Part of it is because I’m tired and emotional, I expect. I felt overwhelmed again last night. And so, so emotional. I’ve spent days looking up psychologists online, trying to find which ones are close enough to me, which ones are clinical psychologists, which ones do autism assessments in adults and not just children, and waiting to see which ones will answer my emails and questions. It’s time-consuming and confusing. But not as confusing as the chaos in my brain. I’m analysing everything, and thinking about the future and the past. I got into bed last night and cried my eyes out.
Who am I?
I don’t regret this, I don’t regret any of this. I decided earlier that a good metaphor would be the feeling you might get if you were about to get married, and a good friend revealed to you what a completely deceitful, cheating, dishonest tosspot your future spouse is. There would be initial pain and lots of rearranging of your past and your future in your head but eventually you know it would be the right thing to do, and you would be better off with a new plan.
A few people have asked me if I really need to get diagnosed. And the answer for me is Yes. I want someone who works with Asperger’s every day to look at me, listen to me and recognise me. If it stigmatises me, so be it. The best way to describe it right now is I feel like I have windows but I can’t see through them yet. They need cleaning to clarify what I’m dealing with.
After a walk on the beach with Richard and our 9-year-old I came home and did a bit more research. I filled in an austic spectrum questionnaire and got another high score on a website written by someone who works with people on the autistic spectrum. She writes:
My view of Asperger syndrome is that it is simply a different way of thinking and thought processing. Asperger syndrome only affects a small part of the brain and, similar to dyslexia, does not change personality.
More at: http://www.maxineaston.co.uk/what_is_aspergers/
I found it reassuring and self-validating in a way.
I’m still me. I always was.
But please don’t take all the almond butter!
I suffered from anxiety disorder and confidence problems, and being organised was difficult and even painful, I got easily upset when someone disagreed with me, I had issues with noises, the telephone, smells, and surprises….
But otherwise, pretty normal.
In other words I was neurotypical (ish)
Or so I thought.
And then I caught Asperger’s Syndrome.
It all started when I wrote a blog post about anxiety. People on the autistic spectrum, or with children on the autistic spectrum, said they related to the piece and found it helpful. I didn’t know most of these people but seeing them share my blog post amongst themselves was nice – interesting and a little bit curious, but nice. You see I’ve always felt a sympathetic connection with people with Asperger’s Syndrome. I’ve always understood the feelings of being overwhelmed. I’ve never been on the autistic spectrum myself, you understand, I have just been shy and anxious so it’s different for me. But I saw a connection and felt a kind of outsider’s understanding.
Until the last few days, that is…
The same day that all this appreciation of my anxiety blog post was happening, a friend sent me a message. She was a little hesitant and chose her words carefully but she wanted to know if I’d thought about whether I could have Asperger’s Syndrome.
This is what happened in my head:
Firstly: Me? Asperger’s? No. I know about Asperger’s. I’ve studied it with the Open University. I don’t have all the problems associated with Asperger’s.
Then: Answer the question, though, Rachel. Have you thought about it? Well, yes, I have thought about it. It was brave of her to ask, so I won’t come across as insulted that someone thinks I’m autistic, I’ll just say, yes I have thought about it, and no I’m not autistic.
And then: Yes. I have thought about it, but how do I know? How do I really know? This person who sent me the message has known me for ten years. She’s read a lot of what I’ve written and sees how I interact with others; she says she’s been thinking of saying something to me for a long time. This isn’t a one off. She is also “a bit of an expert” on the subject. Let’s just get the book she recommended. Let’s see if we see any or enough similarities.
So I got the book and I read the book. And I spent some time alone in my own head for a day or two before I admitted to my husband what was going on.
When I spoke to Richard he looked doubtful and possibly a little irritated. But then he’s always accusing me of misreading his face. His reaction was definitely a little cagey and of someone unconvinced. It struck me perhaps he didn’t want a wife with autism. So I kept the rest of my thinking to myself. And I read another book.
And that’s when I started to get some symptoms of Asperger’s. And then some more. And then some more. Until I had full-blown Asperger’s Syndrome.
I withdrew for a few days – not completely, but I became a little trapped in my own thoughts, a little slower than usual and I allowed myself the very unusual treat of sitting on the sofa reading and ignoring everyone. I don’t usually allow myself such a luxury, but this was important.
The more convinced I became that I did indeed have Asperger’s afterall – that I am an “Aspie” – the more I wanted to talk about it with someone. But I didn’t know what to say or to whom. Eventually I emailed my mother and my sisters and introduced them to the idea. I’d say they were initially unconvinced and I was left wondering whether I should have kept my thoughts to myself. But to me this all felt massive and so, so important too: a life-changing discovery; a new way of looking at my life and myself and my past, a new set of challenges perhaps and maybe a new set of achievements now I was armed with all my new knowledge and insight.
I wanted to tell my family how I needed them to agree with me and support me but they hadn’t read what I had read, they had no idea what a success I had made of hiding my symptoms for years, and all the acting and performing I’d achieved in order to appear normal.
The mixed up feelings and emotional highs and lows brought on a lot of my symptoms: I had restless nights and struggled to get up and get moving every morning for a few days (even more than usual), I stopped doing yoga, took hours in the shower, a little habit I have of counting to ten, even though I don’t want to, played up big time, my stomach ached and I’d get to the end of the day feeling I’d achieved absolutely nothing. I felt physically shut off from everyone else, I felt totally alone in both a good and a bad way. It’s easing a bit now to a more usual level but I’ve been jiggling my jaw side to side a lot more than usual and playing rhythms with my teeth (Gawd, that would annoy me if someone else was doing it!). I’ve been super-emotional and sensitive and even more forgetful and overwhelmed by basic tasks than usual. I’ve felt small and young and upset revisiting painful memories of times when people misunderstood me. And while realising that it was probably due to Asperger’s is some comfort, the memories are still painful.
It’s all been a bit of a shock. I’ve been doing an awful lot of self-indulgent navel-gazing for over a week now. It’s been an enormous thing to take in. I’m not ashamed to say I have been completely obsessed and have made it a bit of a project. (I do love a project, though anyway!). I can’t stress enough how life-changing and significant this all feels to me.
I’ve spent my whole life coming up with excuses, reasons, past traumas, life experiences for every difficulty I have or have had fitting in to this world. I’ve put things down to shyness, to my creative personality. More recently I’ve simplified everything by just trying to accept that I’m a bit of a hermit – it’s no big deal. Only it is a big deal. It’s a very big deal indeed. It’s my whole life and I’m not who I thought I was. Well I am, but not in the way I thought I was.
I’m not just rubbish or lazy: I’m confused by what is expected of me.
I’m not just quick-tempered for no good reason: I’m overwhelmed by smells, lights and noises that don’t overwhelm other people.
I’m not just a rude, unsociable git: I actually can’t talk sometimes because my brain is wired differently from more sociable people’s brains.
So I’ve been reading. And reading and reading and reading: Online stuff, e-books, paperbacks; blogs and biographies by Aspie women, books by experts. Within all this information, I’m re-reading information that I read a few years ago and reading it from a different angle. I’m not reading: “People with Asperger’s might have this, that and the other trait or difficulty”, no, I’m reading: “You (I) might have this, that and the other trait or difficulty”.
With the advice of the friend who first got me think about this – all of those twelve long days ago when life was so different, I am learning to look for information specifically about women on the autistic spectrum. One of the reasons I decided I wasn’t an aspie all those years ago was because so much of the information was based on initial research done on boys. It’s different for girls though. Some of the men’s and boys’ traits don’t present in women and girls.
Now I know why it is that when things go wrong – however small – I can be inconsolable; why when I’ve chosen to wear a particular pair of socks and I can’t find them I feel like a supernatural force is trying to ruin my life; why when someone interrupts me mid-thought or mid-action I have a meltdown and can’t get back into what I was doing; why I am terrified of the telephone and think it sounds like someone screaming so loudly that I want to hold my hands over my ears and cry. I know now why I am always running lists in groups of 5 in head and repeating them rhythmically, why I’m always counting to ten to get a job done quickly, jiggling tunes with my teeth, and biting my lips and the inside of my face. I know why sometimes when I am out in public I’ll shove my hands into my pockets and freeze and forget to move or talk, why I’m always looking and listening for danger, why I find I want people to hurry up and finish when they’re talking to me, why I’m distracted by light and movement.
Why I can never ever, ever relax at all. Ever.
I don’t have all the typical traits of Asperger’s. For instance, I think I am very aware of other people’s feelings and I think about other people all the time. And I don’t have an obsession with a particular subject such trains or numbers or lists of facts (but I can obsess about something so much so that I burn the dinner and forget to get dressed for a while and then I’ll switch to obsessing about something else). And I believe I do understand social norms. I perhaps just don’t have the skills and I don’t enjoy them. Basically I choose to not get involved in social events. I also have a sense of humour and appreciate others with a good sense of humour and I thrive on sarcasm. I think it’s likely that a lot of “Aspies” will say they don’t match particular traits.
I’ve thought a lot about my childhood this week and how I used to play. I never enjoyed things that involved a large group. I didn’t feel that it was because I didn’t understand or that I was excluded, I simply didn’t enjoy group activities. I preferred small groups or one-to-one games. I didn’t see any point or any fun in charging up and down screaming. I’ve thought about how I could never bear to leave the house and go to school, and how I had stomach aches day after day for no apparent reason. I’ve thought about how for years everyone told me I was too quiet, should join in more. I want to go back and hug that little girl and tell her she can be quiet if she bloody well wants to; she doesn’t have to fit someone else’s idea of how to behave.
I’ve thought about traits I clearly do have and traits I believe I don’t have but in the middle I’ve noticed things I’ve been in denial about. For example: I am unreasonable when people disagree with me. I always have been too quick to feel that a different point of view is somehow offensive and insulting to me. I feel a physical anxiety as if that person has let me down somehow – especially if I know them and they know me. The intelligent, reasoning side of me understands wholeheartedly that everyone is different and sees things from a different perspective but it is perhaps the autistic side of me that will not and cannot cope with people not seeing how I must be right! I’ve read things, I’ve thought about things, I have good instincts, I have a great sense of justice. Therefore I must be right! Right? I’m now working on the premise that I may indeed be right and people may indeed be letting me down by having another point of view but they are not doing it deliberately (although it really feels like they are trying to upset me!) and it is not my problem. It’s a start. I’ll work on the rest…
Another thing I’ve been in denial about are my quirky little repetitive habits and ritualistic daily routines. Now I’m watching myself more closely I see how I line things up, how I do things in a particular order or a certain number of times. I looked at my jewellery box recently. I’m not big on jewellery – things rattling around or moving against my skin irritate me, but I do like stud earrings. I have compartmentalised my earrings into flowers, birds, insects, natural shapes and modern shapes. That’s probably not something everyone does. But it’s not something I’d analysed before.
Dissecting my regular day and observing myself as if from the outside isn’t easy, but I’m having a good go and while some of it is a little unsettling a lot of it is also amusing. I can see how a lot of what has become habitual is unnecessary and is slowing me down. I realise I am less comfortable with change than I like to think and I’ve been using routines for comfort. Like Liane Holliday Willey, the author of Pretending to be Normal: Living with Asperger’s Syndrome, I have had no trouble self-diagnosing myself and can see how I sit comfortably within the spectrum with my little collection of quirks and struggles.
The next thing to think about is whether I can put myself through the formality of an official diagnosis and all the anxiety that will cause me, or whether my self-diagnosis and conviction – and the conviction of those who know what they’re talking about, is enough. I suppose at 44 years old, one might question why I would need a diagnosis or why I have not been diagnosed before – All this time and no one picked up on it?! Maybe it’s all in my head? Well, perhaps it’s precisely because I am 44 that it hasn’t been picked up on. I’ve had a good long time to normalise my behaviours. None of my behaviours seem odd to me and I’ve not thought about them too deeply before. It’s only when I try to fit them to the status quo that some of them seem a bit problematic and many more I have learned to disguise.
As this looks like this is a family trait it may be helpful and useful to those I love for me to be formally diagnosed. And there will always be some for whom a self-diagnosis will not be enough – they will believe it’s all in my head or I’ve decided to give myself Asperger’s because it’s my latest obsession.
For now though: more reading and more coming to terms with everything.
It’s still very early days and I have a lot to discover, but I guess I’ll never know for sure what about me is unaffected by autism; what’s learned, what’s genetic, what’s neurotypical in my behaviour, and what is controlled or interrupted by untypical brain-wiring. And that doesn’t matter because I still want to be me, regular me living my life and having legitimate thoughts, feeling and opinions. But just thinking I can file some of my problems, my unproblematic quirks and some of the things that cause other people concern under “Asperger’s” is already making me unbelievably excited, and for that reason I’m glad I have the wiring a bit different in my brain and I’m going to stop pretending I don’t.
Thursday 6th February 2014 marks the first ever Time to Talk Day: “24 hours in which to start conversations about mental health, raise awareness and share the message that mental illness is nothing to be ashamed of, neither is talking about it.”
So here I am, sitting in my sitting room, trying to talk to you about something I hid for years.
I’m not very good at this though because I have anxiety.
I find it difficult to make eye contact for long. I fidget, I look beyond you and above you and around the room in order to find my words. Often I find the wrong words just simply to avoid an uncomfortable silence. I offer you tea, I make it badly, and I shake a little as I bring it through. I’m not shaking with nerves but with the after effects of being anxious before you arrived. I will have worried about how everything looks, about how I look, about which cups I should use. I will have worried about what I will say and imagined all the things that might go wrong. I probably had palpitations, outbursts of anger, and I probably paced a lot. At some point I will probably have had a bad headache – or I may get one tomorrow when you’ve gone. I will be so anxious about being anxious that I will be ill.
You asked if I wanted to meet you in a café but I declined. My anxiety means I don’t drive. I don’t often go out alone and when I am out I need to know how I’m going to get back again and I need to know that it won’t take long. My anxiety has made me agoraphobic. Not because I am afraid of people or open spaces or crowds, but because I am afraid of being out of control and of not being able to escape. I literally feel so ill I don’t have to lie about why I can’t make it. I really am not feeling well.
But things are improving. About a year and a half ago, I had to admit I was too anxious about everything. I had to admit that being anxious was stopping me from doing things I wanted to do. It was difficult for me to make this admission. It was easier to pretend I didn’t want to do anything. You see that’s the way to avoid the physical symptoms. Don’t go anywhere, don’t see anyone, don’t have chats over a cup of tea, pretend you don’t need friends, and – lo and behold – you have no commitments to those things that give you the awful physical anxiety symptoms. It’s actually quite clever what we can do with our brains: how we can convince ourselves that we prefer things the way they are. ‘I’m happy being at home alone and not talking to anyone at all for days,’ I told myself. And it’s true I felt better. I feel healthier when I don’t have to honour any commitments to anyone. I find a certain peace from time alone in the garden, listening to nature. And I am shy; I do like a quiet life. But it’s not true that I don’t need people, and that I want to be always alone. In fact too much time on my own eventually makes me feel depressed and causes me to focus on unreal negatives. In essence: I become rather paranoid.
A lifetime of subconsciously inventing ways to avoid the physical symptoms of anxiety has made the unreal real and fitting my patterns to my health needs has limited my life choices. Not just a bit but massively. My world is very small, my ambitions are very lowly; my hobbies and activities are incredibly modest. How much of this is due to anxiety and how much of this is due to personality and shyness and naturally modest ambitions I’ll never completely know for sure. But I do know now what I’ve been doing all these years and I do know now that there are things I can do to help me enjoy things I would otherwise have avoided simply because I felt unwell or was scared of feeling unwell.
Changes didn’t happen overnight and there is no real cure, but there are coping strategies: The doctor has prescribed Beta-blockers for me so I can stop the palpitations in an emergency (just knowing I have them has helped and I hardy ever use them) – and there is also a surprising comfort to be found in admitting I have a problem: firstly because it means I can stop being so cruel to myself, but secondly because I can tell people honestly what I think I am capable or incapable of.
There are still some fairly bad episodes of anxiousness and the physical symptoms whoosh in like a horse bolting out of a stable before I’ve had time to shut the door on them. But I am getting so much better at reining them in. It’s easier when you know what’s happening.
If I could reach out to just one other person who suffers with anxious thoughts and doesn’t know how to enjoy life, I would say this:
Know that it’s just your imagination overworking itself. Know that you are not alone. Know that it’s difficult to make that first step to speak out and make a change but it’s even harder not to and to carry on struggling in silence. Know that hiding it is not the answer.
And most of all: know that it is not a sign of weakness. The energy it takes to cope with mental health problems exhausts us. We are fighting every day and we deserve some recognition for working so hard.
If just one person could read this and sit up and think, “Yup. I think I’d like to talk to someone,” then it would make my day.
You may be surprised at the peace you might find.
I wish I had a box of sticks – the size of pencils but not so precious, that I could pick up and snap to break my frustration.
I wish I had a pile of plates – that smashed like crockery but not so sharp, that I could hurl against a wall to shatter my anger.
I wish I had another foot – that swung like my own but felt no pain, that I could boot against a wall to kick away the boundaries.
I wish I had another face – that looked like mine but never anxious, that I could wear when life keeps on demanding.
I wish I had another heart – that had this love but not the ache, that I could carry inside me to keep my pulse steady.
I wish I didn’t have to write shit like this
I haven’t written a blog post for a while. I regularly long to write and blog and blurt out my thoughts but I can’t settle long enough or often enough to organise my words. Being an anxious person does weird things to my brain: it clouds my judgement and reorders my thoughts, it plays lists of Other Things I Should Be Doing so loudly in my head I can’t concentrate or relax; it makes the outside world a challenging cacophony against my interior thoughts and leaves me running in circles and chewing my nails, often achieving little or nothing.
As a writer, it is assumed I should and do read a lot, right?
I can’t even settle for half an hour with a good book. I lust after books, I buy books, I line them up on shelves, I take them to bed with me at night, but I rarely get past the first few pages. I can’t seem to stop the feelings of guilt for relaxing, as if relaxing is not only impossible but somehow not allowed. It seems I should be constantly dodging bullets or chasing chickens or watching for wolves. I said to a friend recently that in the past I would have been the one to stay awake all night and listen out for danger. It’s like there’s an alert button that will not switch off.
Anxiety also messes with my routines and cuts my connections to the things that make me feel whole. I can commit to great swathes of different activities but then suddenly I find I am not managing anything. It’s a rather rocky path to travel along, my life. I look back and see I have been stumbling on things for a while and dropping things along the way. It’s hard to go back and pick things up when you haven’t done them for a while. Leaving things or ignoring things and hoping I can feel like dealing with them in the future is a terrible habit of mine – it’s a coping mechanism I guess, but one of the false coping mechanisms that we anxious people use when we believe can’t actually deal with things at all. It’s strange how we know that in reality we will feel better when we have dealt with things that are causing us to worry, but instead we try to block them. My memory also suffers a lot because of my difficulty remaining calm. I think so much of my brain deals with being anxious that I don’t always process or store information efficiently.
There’s a popular mantra theme I see all the time on the Internet: Face your fears; Do one thing every day that scares you; Feel the fear and do it anyway -as if we will somehow feel better if we have done something truly terrifying. One thing I find important to stress as an anxious person is that we are doing things all the time that absolutely terrify us and it is exhausting! We are not skydiving or white-water rafting or making speeches to huge gatherings, but we may as well be. Just being moderately normal kicks out so much adrenalin I get a dry mouth, palpitations, migraines, insomnia, digestive problems, alcohol cravings, bad reactions to sugar and caffeine, tearfulness, shaking arms, chest pains, shallow breathing and exhaustion: exhaustion like you wouldn’t believe. I can’t possibly entertain the thought of deliberately looking for something scary that will make me feel fulfilled somehow! Crazy.
My introverted behaviour and longing to be at or close to home must give a false impression of how I am. I must seem quiet, unadventurous and perhaps a little dull. How contrary that is to the way I feel: I am easily bored, I love new stuff and am always planning new projects. But the problem with anxiety is that it can blow up at any time and the excitement of imagining, dreaming, organising and planning can switch to the panic of loss of control and fear of disaster, or feelings of being overwhelmed or unable to cope. Failure is always at my shoulder. Often the anxiety tells me to stop everything because I am getting it all wrong and I’ll never be a success at anything I’m trying to do.
Some days I allow myself to do nice or pleasant things (or just not awful, mundane things ) but most days I don’t. Many days I am simply tough on myself all day and will only allow myself to do what I think will serve others; some days I am punished by the extreme exhaustion and other physical symptoms of having pushed myself through a stressful situation. I can refocus for a while – particularly while out walking and paying attention to things around me, or while watching a gripping film, but it never leaves me. I am never completely calm.
Anxiety is not a new thing for me. It’s newly diagnosed and newly accepted, but it’s a chronic part of who I am. It’s something I have always had inside me. I think through genes I was born anxious but it was intensified by stressful situations as a very young child, and has been triggered by other things that have happened as I’ve got older. I also had anxious parents and it’s bound to have affected me. I am anxious through and through: mentally, physically and emotionally. I don’t feel it’s something I can step out of or get over through a course of CBT or drugs. I feel in my case it’s about recognising, accepting and managing.
The most important thing that has happened to me in the last year is being forced to recognise there is a problem and talk to a doctor about my symptoms. Not everyone likes a label, and perhaps not everything can or should be labelled, but I needed to blame something else rather than myself for the days that have been so dark and frightening I simply couldn’t cope with getting out of bed or leaving the house or being around other people. Blaming myself for everything over the years has certainly increased my anxiety and the fear that I look merely useless or lazy or thoughtless or unreliable has brought me incredible distress. In fact the impact I perceive I am having on others brings me the greatest distress.
Everything starts in my head with “You’re not going to cope with this situation”, and then that either escalates to a point where I duck out of the situation in which I have decided I will not cope or I force myself into it and I find I am in a “You’re not coping with this situation” kind of hell. This is always followed by “You didn’t cope with that situation. You are a failure”. The failure plays again and again in my head, making me feel hot and sick and restless.
Now that I can call that situation “Anxiety” and not just me being useless, I can begin to take back a little control. The anxiety still kicks in before the reason, but I can often recognise it now and decide if I’m strong enough to fight it, and I have spotted little tricks to fend off some of the physical symptoms, sometimes. Sometimes I’m just done in and nothing works but I am armed with knowledge and understanding of myself and my disorder now. I still can’t always make a division between what I just don’t want to do and what I would like do to if I were less anxious, but I can stop blaming myself.
It’s hard to tell people you suffer with anxiety. Play it down and it just sounds like you’re being lame and will usually lead to people telling you to “stop being silly”, “you have nothing to worry about”, “you’ll feel better once you’ve done it”. I can’t count the number of times I’ve felt better after doing something I was afraid of – because it hasn’t happened. I have never felt better after doing something that scared me – because the fear ruined everything. I don’t blame people – no one can know what it’s like to constantly live with too much adrenalin unless it’s happening to them.
But stress the importance of the anxiety and the serious impact it’s having on your life and you feel the stigma of a mental health problem begin to emerge; people avoid you or suggest things you should do, or helpfully imply that you would be better off on drugs.
Here’s what I want to say to people:
I suffer with a chronic anxiety disorder. I don’t want you to do anything or say anything, I don’t want you to pity me or avoid me. It’s not who I am but it affects how I can act, and I’m dealing with it in the best way I know how. For me everyday life is like a lot of tangled threads, and simple things are not easy to order or contain. I need you to know and to accept it because I see how keeping it hidden has made me more anxious about the way I might be judged and that really really hasn’t helped.
In 2010, I bought a copy of the Bristol Short Story Prize Anthology, and found a story by Claire King, called Wine at Breakfast, which was written in a way that seemed to fit me. It had a rhythm that felt familiar and matched the way my own word rhythms work. This made it natural for me to read it as if it belonged in my head. And it contained all the things that I find powerful and captivating: family, love, imperfection, struggle – the wow!ness, if you like, of real life.
So I decided to stalk this writer and was delighted to find her on Twitter. I was also delighted to discover she was every bit as human and warm as her writing suggested.
At this time I was going through a type of writing immersion: I was taking a writing course with the Open University, writing daily, following hundreds of writers on Twitter, joining groups and subscribing to writing magazines. I found another winning short story by Claire, in Writers’ Forum Magazine, about the exhaustion of being a new mother. Again it had all the things that suited me and was delivered in Claire’s natural musical phrasing so that the words flow through and over you instead of bumping and making you take breath in the wrong places. When someone writes that well, there’s no need for bells and whistles – the way the pull of human struggle is written and draws out your emotions is enough of a ride.
What I like best about Claire, though, is not that she is good writer. It’s that she doesn’t talk about her writing all the time – she talks about life, she makes jokes, she puts her family in the number one position before everything else in her life. She doesn’t judge others. She likes silliness, food, drink, the open air, and life – real life – in general, and she sends herself up. You get the feeling talking to her that she knows how short and sweet life is and that in order to cope with the briefness we need to appreciate the sweetness. There is also an overwhelming sense of empathy and understanding that emanates from things Claire says. She comes across as someone who knows what pain looks like and has possibly seen things that give her a special perspective on life and a deep understanding of people. She shares. And shares this well in her writing.
So when (in 2011?) I heard Claire’s first novel was to be published, I was very excited. I was in the middle of writing an important assignment but stopped and had a drink for her (“in the middle” in a “checking out what was happening on Twitter” kind of way!).
I finally got a copy of The Night Rainbow in my hands when it was published in February this year, and found myself in the most wonderful position of knowing without a doubt that I would love it. Things at home had been tough for one reason or another and I was shattered and low, so I put the book on the shelf next to the bed and waited. I knew there would come a time when I would be ready.
And finally, four months later – eight days ago, I was ready. Not liking spoilers of any kind, I had carefully avoided reviews about the book, and I let the whole experience be a complete surprise.
While you could apply terms such as “unputdownable”, and “page turner” to this book, I was strong and managed to stop turning pages and put it down each night and make it last a week. I’m glad I didn’t take a one-day trip to be in France with a little girl called Pea and her world. I’m pleased I got to visit for a week, and get a feel for the place.
Just as Claire doesn’t tell the reader how to think, I don’t want to tell you what to think of the book. And there are a couple of surprises that unravel along the way – one of which I feel must unravel at the reader’s pace so they have their own unique experience whilst reading. What I can say though, is that the beautifully rhythmic writing is there, the human condition is there – everywhere! My senses came alive, my heart was broken and patched up, and I really felt I’d stepped outside myself and been Pea in France for a while.
There is one strong thread throughout the book and that is the sense that the boundaries between what is real and what is not real are often blurred. The absence of speech marks makes this especially clear. While we are watching 5-year-old Pea struggle so enormously to make sense of the world – and perhaps we are happy sometimes that she doesn’t – we can also be allowed to think that we as adults – and indeed the adults in the book – are just as guilty of seeing things through only one pair of eyes, through one perspective as Pea does, and how that can never and will never give the whole truth.
Of course I will take my own individual reading of this book and make it fit my own concerns, but what I gained from the novel was a sense that it is all too easy to judge and/or be afraid of others but we are all the sum of life’s struggles and need to be loved. There was not one character that was truly awful or wholly bad, but there were often behaviours that concerned or had an adverse effect on others. This is how human beings are. Revolving the story around Pea’s perspective gives an insight into how complicated we can look from the outside and how actions or words can be misinterpreted, but overall, most of us are pretty decent people. As time goes by in the story we can see how the adults struggle just as much Pea to make sense of the signs and misread each other.
On a personal level, I recognised the exhaustion of pregnancy, and the difficulty I found in being what everyone needed me to be in difficult times. I recognised also the tremendous power grief has over a person. I’ve seen what it looks like and how difficult it can be to claw your way back to normality. As a very young child I watched my mother cope with debilitating grief and Claire has expressed this really effectively in the novel.
Despite the horribleness that everyone seems to have endured at some point, there is a life-line of sweetness brought to the reader through the delights of the natural world and the seasons running through everything. The descriptions of food are totally delicious! Life stops and starts and bumps; it hurts, it shocks, it confuses. But life goes on and it’s not all bad, especially when there are biscuits.
I’m not really a fan of star-rating for books but, just in case Pea is reading, I would like to give this novel eleventy hundred.
And do I recommend it? You betcha!
The Night Rainbow.
(Also available in paperback in August)
When you died, grief hung around the house in your image.
It sat in the bedroom in a chair that wasn’t there, and waited in every darkness. It wanted to introduce itself to me, but it was so heavy with trauma, fear and the unknown that we were awkward together. I flicked on lights and told it it wasn’t there.
Over time, the images were less cruel and less frequent, but grief still begged to be noticed. It stopped me in the kitchen, and held me poised with one hand on the handle of a rumbling kettle as it boiled. It took advantage of the noises of running water, flushing toilets, spinning machines; keeping me suspended in another realm whenever sounds of the outside world were held off by white noise.
It followed me to the bathroom, to my moments of solitude, and crept into bed with me at night to wait for the insomnia that always came. It seeped into my computer and chose the saddest songs, wound its way into my throat and pushed at my chest.
Like a lover, it became jealous of my family, and played with my face – dragging down my jawline to make me ugly, capturing my gaze and distracting my eyes away from my children. It punched me in the chest, poked me in the eye, bruised me, made me cry. It took control of my voicebox and made me talk about you, held my hands and made me write about you. It was a bully and yet it wanted to be my friend.
I didn’t send grief away. “I notice you,” I said. “I don’t hate you.”
I treated it with respect. I gave it time, I gave it words; I gave it music and let it enter me. We became companions, grief and I.
Now grief is quieter. It is never happy but it is settled here. It has a place and it behaves better because it is satisfied we know each other now. It believes me when I say I will take it everywhere with me and keep it safe. Sometimes it sits above me and tickles my head or closes my eyes. It points things out or sends me a memory. It doesn’t want me to be always afraid or always in pain – I know now – it came to replace you. And that is why it is so insecure: it is such a poor substitute, but substitute it is.
Today is my father’s birthday. He would have been 72. It is also Fathers’ Day.
Grief and I had some time alone in the garage today and now we are sharing a glass of wine while grief writes this.
(not to be confused with pilates – I never did that)
When we’re walking the dog along the beach, I often pick up a stone or a pebble and turn it over, hidden, in my left hand. I prefer an imperfect, partially-worn pebble, still with edges, crevices and knobbles. I absent-mindedly assess its contours with my fingertips and become accustomed with how it feels and what to expect with each turn. There’s comfort in the familiarity of the rhythm, and it’s a nice simple thing to do while my conscious brain thinks it’s really engaged in walking, taking in the view, and perhaps discussing the family or the shop or something trivial with my husband. My other hand is usually in charge of carrying my camera, and that’s where all the responsibility lies.
But today I saw two pebbles of a similar size that both looked like they would be nice to hold. I picked them up and held them together, tumbling them over each other. It didn’t seem as simple or as pleasant as turning only one. The pebbles bumped together and destroyed each other’s rhythm, and they grated as grains of sand scratched as they turned. It wasn’t long before I could tell them apart though and had noticed one was sharper than the other. I became more aware of what I was doing and started to think about it. What if there were three pebbles in my hand?
I picked up another one and held the three together. As I moved them around, the tumbling became jumbled and random. I had less control. But I could soon make out three different stones by feel: one was the smoothest, one was the sharpest and one was neither the smoothest nor the sharpest – it was just there. I now had to think about why it was individual and how to identify it. It was a little smaller, I eventually decided.
But what about four or five stones in the hand – all of a similar size, all supposedly taking up as much room in my hand and all hopefully getting a fair number of tumbles?
Well I tried it. And it certainly wasn’t comforting or simple. It wasn’t rhythmical or easy to keep tabs on each stone and the enjoyment of predicting the feel or a surface on each turn and being rewarded by being right had completely gone.
There was just too much going on
Each pebble, on its own, one at a time: fine. But in the time it takes to walk across the beach I don’t have time to play some 5-pebble swapping trick. Besides, I have too much else to think of, and worrying about whether each pebble has had a juggle in my hand is quite frankly bordering on the obsessive. So… just how many pebbles is healthy?
Okay. I’ll be honest now: the pebbles are just a catalyst. I’ve also been thinking about pies and plates his week.
“How many pies is it healthy for me to have my fingers in?” I’ve been asking myself.
“Is it sensible to have several plates spinning if I can’t keep up with them all, am not enjoying the chaos, and which plates would be missed if I just concentrated on one or two?”
Feeling a bit chaotic and plate-spinny coincided with a recent period of low-confidence and bad health – mentally and physically. I’m sure they’re all connected in some way but not necessarily completely related to one another. It’s like Velcro balls: all separate but cause havoc when they’re all stuck together
On Tuesday I was on the brink of writing a farewell blog post. My paid-for domain name expires on 1st July and I’m not planning to pay to renew it. I thought I could write a swift goodbye and leave it there for 3 weeks until it disappears. Blogging takes up time. It’s occasionally caused me arguments which have led to bad feelings and those bad feelings have never left me. Because my blog was initially set up as a creative and communicative writing outlet, I felt as if I was failing on the communication side of things. It’s one thing to have your comments challenged in casual conversation, it’s another to have them challenged when you’ve thought about them long and hard and spent time writing them. It begins to feel like unpaid political journalism. I’m not in that area because I’m not mentally up to it. I would focus on the negative and the conflict and allow it to ruin everything. It’s an unavoidable part of low self-esteem. Besides, I may write mildly subversive thoughts occasionally but I’m never offensive or prejudiced. I would say I simply bounce thoughts around in a benign way. In my fiction and creative writing, I particularly don’t like receiving creative feedback when I haven’t asked for it. If my writing doesn’t work for someone, I’d rather they quietly ducked out rather than telling me I’ve done something wrong (when their “wrong” can equal a different taste rather than any kind of accuracy or breaking of rules). I found myself telling my sister on the phone recently I wanted to pour stuff out but not deal with the consequences. If I’m going to have to read scathing literary reviews about my work on a weekly basis, I’d like to be a. published, b. paid for it and c. for the person to have jolly good reason for their comments and they way they are delivered. Creativity (for me) can’t be constantly interrupted by criticism. No one sits outside my window when I play the flute, yelling, “I don’t think Vivaldi meant for it to be played that slow!” And I rarely get people telling me on blipfoto that my photos could be better – which is amazing because they could always be better! I’m doing it again: focussing on the negative!
And then there’s the peace, the guilt and the time involved in writing.
Writing does great things for me but it doesn’t make me feel like a good person. I feel inconvenient. I want solitude while my thoughts and words arrange themselves, and any interruption destroys everything. EVERY THING, I TELL YOU!! The trouble is the interruptions are usually unavoidable and my responsibility. I can escape the rage and frustration of interruption and the guilt of being inconvenient if I don’t write, right?
I quietly made up my mind to stop writing and slowly began to let it slip out.
Then three things happened in amazingly quick succession just as I was planning my final blog post that stopped me:
1. Someone whose opinion I value very highly said something complimentary about my blog posts
2. Someone else who follows me on Twitter didn’t know I blogged asked to see my blog and said that after reading my tweets – they would be interested in reading longer versions of my tweets
3. My mother came over for a visit and I didn’t get a chance to go near the computer that afternoon.
The farewell blog post never happened.
I realised the crisis in confidence had been a bigger part of the decision to stop writing than I had been admitting to myself. I don’t actually want to stop writing. And I don’t want to say I’m not a writer. I just want life to be easier. Easier on my terms. I want to sleep better, I want to have more energy, I want to stop having days of nothing but brain fog, I want to be able to do everything I want to do and everything other people want me to do. I want to be brilliant, amazing and the world’s best multi-tasker. But most of all I want to stop being disappointed with myself and I thought I would be better company and more efficient if I stopped writing.
But I haven’t been.
And I haven’t really stopped. I’ve been writing in my head. I do it regularly. I can’t stop. And I can’t make myself be more efficient or organise my time better. I just can’t. I’ll write a list and then feel ill all day, or I’ll plan to make bread and then end up planting potatoes. I cannot put aside a time to write, a time to play the flute, a time for walk, a time to take photos. I simply can’t.
I’ve tried again and again and again and I fail over and over and I hate myself for failing.
So I’ve looked at my plates, my pies and my pebbles. I’ve stopped spinning the plates, I’ve taken out my fingers and licked off the gravy (yum, pies…), and I’ve put the pebbles on the desk (<- that one's literal). There are too many needless plates and I’m getting rid of them. There are nice plates but I don’t need them so they will have to go. There are other plates I have no idea why I’m still trying to keep up. Social conditioning I guess.
Well. No more spinning. I don’t need to be something. I don’t need to prove anything. I need to survive. When I’m anxious, when there’s a lot going on, when ill health or exhaustion strikes I won’t write and I know I can’t write. I won’t be committing to anything at all any time soon, and I won’t be thinking of it as something I need to fit in somewhere like a task that grates against everything else going on. I’m just going to take each day as it comes, and try to stop taking any notice of people who like to provide endless lists of how bloody marvellous they’ve been, or people who are totally conventional and have no idea how it feels to be me. This is how I have to live because this is who I am.
What else can I do?
Besides: stuff it all. Who said there are any rules about anything, anyway?
So. Erm. Yeah. What’s the conclusion?
I’ve simplified my blog and it stays. For now. But I’m not paying to keep a paid-for domain, so it’ll just be any old WordPress blog soon. And I’ve removed the “About” page because I can’t keep up with who I am/was/might think I am sometimes. It keeps changing anyway.
Box of plates anyone?
(There really are pebbles from the beach in front of me)
I’m celebrating 2 years since my first attempt at flash fiction by sharing that first story from July 2010 (which is in fact more like a short story than a flash)
(Isn’t it funny – and rather worrying – how only 2 years ago I thought of sponsored academies as fictitious)
‘Zophar, listen.’ Luna crouched before him on the pavement. ‘You can get out whenever you want, okay?’
Zophar nodded, looking past his mother to the others. His body was poised in politeness towards his mother but in anticipation of other children, his eyes looked ahead to his new schoolmates and he willed her to say goodbye.
‘Did you Anti-Germ your hands?’
‘Where are your disposable toilet seat covers?’
Zophar patted his backpack.
‘And mask? Remember which pocket?’
His father opened the driver door of the car and the airlock was released with a Clop. Shhhhhhhh. He stepped out carefully, holding a green canister, spraying into the air as he approached.
‘Another squirt of Pollute Repel for luck.’ He misted the air around Zophar’s head and tiptoed back to the car, as if trying to avoid making contact with the ground. ‘One last button test, perhaps Luna?’ he called, slipping back into the car and sealing himself in.
‘Yes. Quick button run-though,’ said Luna. Tell me again.’
‘Emergency Back-Off spray, emergency water purifying tablet.’ Zophar’s fingers ran downwards over the buttons on his blazer at speed as he rushed through the list. ‘Emergency anti-viral pill, emergency contact button, emergency detox spray button.’ He touched his cuffs next. ‘Panic buttons. Now can I go?’ The five-year-old jiggled impatiently.
‘Anytime at all, if you are worried,’ continued Luna, ‘if someone touches you, if someone coughs near you, if the toilets are dirty. Any reason. You hear me? We’ll get you out straight away. Just press those cuff buttons. And when the car brings you back remember: shoes in the porch, through the first entrance door, blazer off, then through the airlock and straight to the arrivals shower. Don’t come in with your shoes and blazer and don’t touch the cruise control in the car on the way home. You hear me?’
‘I know, I know, you said. Now can I go?’
‘Okay.’ Luna kissed the air, not touching Zophar. ‘Go baby. Take care. Remember: buttons!’ She mimed pushing buttons as he ran off. ‘And don’t run or you’ll fall and touch the ground and I’ll have to take you home!’
Luna clasped her hands in front of her chin. ‘Good luck. Come home safely,’ she whispered.
Zophar scampered up the steps as fast as he thought he would get away with. He was more happy and excited than he could ever remember being.
This was better than birthdays. There were other children here.
The entrance was massive. It took up one whole side of the building.
‘Prevention Pharmaceutical’s Academy of Learning and Science welcomes you all and asks that when you enter the building, you do not share a door pod with anyone else,’ came a voice from within the walls.
Robotic eyes shifted around and each pod spoke instructions through hidden speakers as one hundred children at a time were allowed to enter the first segment where they were instantly separated by screens that held the children in stalls as they were scanned for identification and viruses.
Immediately three boys were locked in and a voice told them to wait until cars arrived to remove them.
Some newcomers were familiar with screening and airlocks. They stood patiently while the eyes and scanners moved around them. But the others, from older housing out of the city had not experienced Entrance Pollution Prevention.
Zophar could hear cries of ‘I want to go home,’ ‘I don’t like this,’ while others sobbed and tried to back out.
Luna had told him about the entrance and how other boys weren’t used to it. ‘They’ll soon get domesticated,’ she had said. ‘Everyone learns eventually.’
Next they were filtered into a huge glass cube. It was one of six on three levels. A voice told them to wait for the professors to collect them.
In this mix of trained and untrained five-year-olds, the difference was obvious to Zophar: the untrained boys had less shiny clothes and they didn’t have emergency blazer buttons. Zophar worried for them. But they didn’t look bothered. A few of them started talking to each other and they even tried to talk to the trained boys. Luna had said to keep away from untrained boys because they weren’t treated. He wondered if it would be safer to hold his nose then he wouldn’t be sharing their air. He held his breath for twenty seconds and gave up.
An untrained boy had been watching him. ‘I can hold my breath loads longer than that.’
‘Ludo’s the best at holding his breath. He swims underwater,’ said another boy.
‘He goes swimming?! Wow…’ Zophar stared.
‘Ye-ah, loads of us go. It’s really good for you.’ The boy threw off his blazer and mimicked breaststroke. ‘Gives you strong muscles. My dad said so.’
Zophar, Ludo and some others took off their blazers too, giggling as they ran in circles pretending to swim.
‘Why are your buttons so big?’
Zophar turned to see Ludo wearing his blazer and fiddling with the cuff buttons.
The airlock opened and a robotic sensor promptly identified Zophar’s blazer. Ludo was shunted gently towards the door pods.
‘Please wait until your car arrives,’ said a voice.
From the door pods Ludo was directed into Zophar’s family car and within minutes he was lowered out at Zophar’s house.
A woman’s voice from a wall speaker said he could try school again tomorrow and she was glad he was home. ‘And remember:’ she said, ‘shoes in the porch, through the first entrance door, blazer off then through the airlock and straight to the arrivals shower. Don’t come in with your shoes and blazer on.’
Luna waited outside the bathroom with clean towels. She stared; horrified at the sight of the strange, untreated boy and then she hyperventilated.
Zophar’s father left Ludo in the entrance while he arranged his collection. Then the house and car were treated before the car was sent to collect the right boy this time. It had all been too risky and too stressful – Luna would home-school Zophar from now on.
This story is now published as an e-story from Ether Books:
(N.B. Thanks to Norman Geras – @normblog , who very kindly supplied me with the inspired prompt word: “prompt” when I asked on Twitter!)
A short story / flash-fiction
It’s still there, like a trophy, on the kitchen windowsill – the bottle you drank from on Wednesday night.
I don’t drink beer. Anyone who knows me knows that.
I wonder how many people have walked past the house and seen it there and thought, ‘She’s had a man in her house. At last.’
I looked at it on Thursday morning, sitting in the sunshine, the last swill at the bottom evaporating into the morning air. I breathed the deliciously dirty, left over smell into my head and drank in the memories as I thought about your deoxyribonucleic acid still on its un-rinsed neck. Still on my neck. The words you knew I wanted to hear repeating in my mind, caught on a loop. Later when Mum saw it but said nothing I felt I was holding that night like a clandestine cloak around me. Memories still so physical I couldn’t share them. Not yet. Maybe in a couple of weeks I’d tell her about the man known by his friends as The Deer Stalker.
On Friday the stale beer-warmed-in-the-sun smell accosted me at breakfast, as if to taunt me: ‘He didn’t phone. You’re used and dirty,’ it said. I held it in my hands for the first time since Wednesday night and examined the neck, hoping I hadn’t made a mistake and fallen for a man who was easy with his DNA after all. I played the evening back like a film and smiled at the blank table top as if it were your face. I dipped the back of my neck into my shoulder as if it were your hand. And then I closed my eyes and pressed the warm rim of the beer bottle to my mouth as if it were your kiss.
Yesterday was cloudy. I washed and tumble-dried my sheets, and the house smelled of me not you or your beer. I looked at your bottle on the windowsill and told it to call me. I told it I was going to be out all day but I would have my phone with me. Over lunch I protected myself with hands in front of my face as I told Anna about my encounter with The Deer Stalker. She tore up her seeded roll doubtfully and gave me half. I found I couldn’t eat as she suggested reasons for your nickname.
After a silence, she asked, ‘What was it like? Are you glad he was your first?’ But I could tell she was cross.
I said, ‘Sorry.’ I was sorry I hadn’t told her sooner.
But she said ‘No.’ It wasn’t that. She was sorry I’d had to find out this way.
I didn’t understand.
I had this daydream this morning that I could take your DNA from the bottle and make a baby. I could give birth to you. Hold on to you. If I couldn’t have you then I would have a beautiful copy of you. Maybe you would find out and you would see me with this baby and realise you loved me. And then it dawned on me that maybe I’m already pregnant. As I showered I wondered if perhaps you’ve lost my number and you’ve been trying to contact me.
But now that Anna’s told me what she found out about you last night I don’t want your DNA. I’m holding the bottle under the hot tap and allowing myself, and the ghost of my virginity, one last memory of my defeat. I admire your stalking talent; your ability to watch patiently from afar until you’ve learnt a woman’s moves. That’s a clever technique to appear as if from nowhere and catch us offguard. And then the softly-softly charming, not touching, always getting closer and closer – winning trust, moving gently. Bit by bit. You won’t hurt. How could someone like you hurt? You creep. You creep.
The first thing you notice as a child is how it feels like you’re not having to wait so long for Christmas to come around again each year. The next thing you notice is that you’re old enough to leave school, then old enough to drink, old enough to vote – officially an adult! Oh – boy – how you can’t wait to leave your parents’ house and use all your new adult rights. 18th, 19th and 20th birthdays seem to come almost back-to-back. Whoosh! Where did those teenage years go?!
But when your parents celebrate big birthday milestones: their fortieth, their fiftieth, they seem old, and really properly growing-up still seems like a long way off for you yet.
But those Christmases still keep coming thicker and faster, and before you know it you’ve celebrated twenty Christmases, twenty-five Christmases and you can’t believe how quickly summer comes and goes each year. Is it really time for Wimbledon again? you ask yourself.
And then suddenly you find out you’re going to be a parent and you have 8 or 9 months to get used to the idea and then before you’re ready you’re holding a screaming baby in the supermarket with sick on your shoulder and your clothes on inside out and an irritating old woman tells you to ‘Make the most of it. They’ll be grown-up before you know it.’ But you don’t know it and you don’t want to know it because you haven’t slept and you want to tell her to piss off.
And then it’s a baby’s first Christmas and then it is Grandad’s last Christmas. And you yawn, scream and plod through the terrible twos and troublesome threes and Wimbledon again. And then the kids are at school and you’re giving away toddler toys and you notice for the first time how old your parents are looking and you scratch your head and think Gosh am I really a parent? What happened there? And the kids make mess and they make noise and they need less and they want more: they want food and things and money and they write Christmas lists and they write Christmas lists and they write Christmas lists and then one of them looks up thoughtfully and says, ‘Cor. Christmas again already. That year went fast.’
And then taking down the Christmas decorations seems to lead directly into Wimbledon and it hardly seems worth putting the boxes away because you’ll be getting them out again in a minute. And then you catch your reflection in the hall mirror wearing a waterproof jacket and holding a garden centre list as you head downstairs with a thoroughly grown-up serious face just like those you saw on your parents’ faces. And someone in the garden centre tells you your eldest daughter looks just like you used to at that age.
It wasn’t such a long way off after all.
And then you notice that the apples have started growing on the tress again already and it dawns on you that it is precisely 18 years since you first found out you were going to be a parent.
I stared at a retweet on Twitter just now: “Streets of #Braunton look busy and patriotic in Red, White and Blue #Olympictorchrelay #NDevon”
I thought about this for a while. I’m not a flag-waver, I never have been and all this fuss in my local area for something which costs ridiculous, RIDICULOUS amounts of money is making me cross on many many levels.
There are people who simply cannot afford to survive day-to-day living costs and the government is telling them to keep tightening their belts – that there is no money – and yet we can afford this???
Our youngest daughter’s school are walking to watch the Olympic torch (well, one of 8,000 torches!) pass through the area today. I love the idea of taking kids on a walk out of school with a picnic to take part in something with kids from other schools. Bring on integration and fun and getting outdoors more often – Hooray!
But for this?
I’m also not impressed by the attention the Queen’s jubilee is getting. More expense, more pomp, more hype, more flag-waving. More ‘little people looking up to big people’ mentality. Can’t people see what’s happening here?! The have and the have nots divide has just exploded. I thought we were trying to undo that inequality in this country. We’re very quick to criticise other countries for it.
So I don’t like the Olympic torch relay.
I don’t like the Queen’s jubilee.
I don’t like flag-waving.
Does this make me unpatriotic, I thought?
I looked at the word ‘patriotic’. I looked at the dictionary definition. I thought about my country, my life, my loves and I decided I am most certainly not unpatriotic. Far from it.
I love the coastline and birdsong and badgers and butterflies and foxcubs and bees and gardens and countryside of our country. I love our scraggly little misshapen, tea-drinking island plonked in the ocean. I support our farmers, our fishermen, our schools, our NHS, our wildlife, our eclectic culture. I am so patriotic it hurts when I see any of those things suffering.
I think all the forced pomp and ceremony is distracting – at the moment it feels deliberately so, but I can completely understand people’s need to get excited about something, to be positive about something, to feel part of something – especially right now. One of the most wonderful experiences of my life was when I took part in a combined schools concert in the Queen’s Theatre in Barnstaple as a teenager. The feeling of being part of something big and public was so wonderful that when the first notes were playing I felt as if my heart was bursting out of my mouth. That feeling is unbeatable and unforgetable and we should have opportunites to feel like that more often instead of stapling children to their desks. I just think the costs of all the ceremony in 2012 outweigh the benefits way and above anything patriotic. I think it is all false. And I am sad. Because I love people and worry for them and because I want to protect what’s real. Because I am patriotic not because I am not.
I’ve just read this: The Olympics represents the triumph of that class of people who used to obey orders without question, and have ascended to giving orders in turn. In consequence, there is order, hierarchy, “stand behind that there barrier”, and a belief that what really matters about your nation is that some bloke can suspend his education for years and at the end of it jump three inches further than a fellow from Papua New Guinea on here: Olympic Torch Route, day 3 – Philip Hensher explains why he is not feeling the wow factor as the flame makes a ‘historic’ visit to Exeter. He’s an associate professor of Creative Writing at Exeter University, don’t cha know, and he’s just got himself a new fan. :)
When she saw it, perched perfectly still on a nettle, it was dark – like her.
She liked that.
Quiet and dark.
Folded up against the world.
She drew her elbows into her sides and watched its antennae twitch. ‘We’re the same – you and me.’
But then it lowered its wings and she saw that she was wrong. It showed off its rich red-orange and its bright purple flashes and powder-blue-eyed stare.
In a multi-coloured flash it took off.
She watched the creature’s papery flight lift and bounce and then disappear it; losing itself in a medley of yellow dots, orange silk hearts, green spikes, purple tongues and bright pink spears. Light petals fluttered, heavy pompom heads swung like upturned pendulums, and grasses waved. The colours altered as the wildflowers danced and bobbed in the sunlight. How inspiring nature was to have evolved a creature that adapted so cleverly to its habitat.
Sitting cross-legged and gazing out across the grasses and flowerheads, she tried to match long-unused names with remembered images: the red admiral, the tortoiseshell, the painted lady… but she didn’t know what this one was. Butterfly spotting had remained in her childhood with so many other ephemeral memories.
She wanted to take a photo. One day she would take the perfect wildflower meadow photo: sky, flowers and one other element: a bee, a bird, a distant hill, a butterfly perhaps…
She looked down at the unopened corner-shop-vodka, with the wonky label, hammocked in the lap of her long summer skirt and squeezed the pills in her fist until her palm begged to be relieved of the pain. Then she stood up – letting the bottle drop to the ground and walked back to the hospital, shaking out the pills like seeds along the path.
They’d said his eyelids had fluttered.
There was still hope.
I’m sharing a quote I’ve just scraped from one of my OU books. It’s an amusing paradox because although it’s in my course book, I can’t follow its advice. In a way I have to do the opposite and write about a lot of literary criticism (some of which I’m not making sense of and I’m not sure I want to).
It’s from a letter written by Philip K. Dick in 1981 where he responds to a
critical article (about one of his own novels) he has been sent and confesses that he finds it unreadable.
‘Criticism, to be valuable, must make sense and must relate in some way to that which it analyses … [E]verything bad about academic literary criticism is found in this article; it is dull, it is pointless, and its only purpose – if indeed it has a purpose – is to exhibit the education of its author, who, I feel, really should read fewer books and, instead, play frisbie in a park somewhere with some little kids (and I might take that advice myself, in view of my recent writings).
Perhaps we are all spending too much time thinking and reading and writing when we should be out in the sun.’
(From The Popular and the Canonical, an A300 coursebook)
Unfortunately, I now have to spend too much time reading and thinking and writing.
About good people doing good things
Back in October, a strange man approached me on Twitter and asked me to follow him.
Even though I had my own puppy and don’t particularly like sweeties, I did.
He beckoned me over and said he’d heard I was good at writing flash-fiction and he wanted me to join in with some brand-spanking new flashing idea he’d had.
Me? Good? Spanking? Flashing?
(okay, maybe he didn’t say “spanking”…).
Must be some other Rachel, I thought, but I decided to see what he had to say.
His name is Calum Kerr and I, for one, had never heard of him before (sorry Calum). He said he was organising the first ever National Flash Fiction Day in May 2012 and wanted to get a few fellow flash-fiction writers on board from all over the country. Did I want to be part of it?
Well, I love being asked to be part of something. I always say, ‘yes,’ and think later.
So I said, ‘Yes.’
And thought later…
When I got an email, a few weeks later, asking all writers to provide a short biography about themselves saying where in the country they were and a brief bit about themselves, I got a knotty, twisty feeling of doom and failure in my stomach. I left the email for a while, wondering what on earth anyone could be interested in about me! You see, I have no Credentials. I just like to write.
Another few weeks later, another email came, saying could those writers who hadn’t provided a bio about themselves yet, please do so.
So I looked online at the National Flash-Fiction Day site, read a few of the bios already there and got that knotty, twisty feeling of failure and doom again.
I didn’t belong there. Other people had Credentials. So I emailed Calum and told him I thought maybe I wasn’t what he was looking for to promote his venture. I said something daft and pathetic about how I’m not anyone – I’m just a mum in Devon who likes to write, I’ve only being writing for 3 years and writing flash-fiction for 2.
I get the ‘I’m worthless rubbish, you don’t want me’ thing from my mother. We don’t believe in bigging ourselves up. We’re much better at listing what we’re not good at. (Which is why Mum never got past the interview to be an Open University tutor…)
So, anyway, Calum would email me back and say, ‘Oh, okay then. What a shame. Maybe next time?’ Yes?
And this is where my faith in decent human beings was restored (and continued to be for several weeks)…
He told me to stop being so silly and write a truthful bio, and he would put up on the site whatever I came up with. He told me that numerous people had told him I was good at writing flash-fiction and that’s why he asked me to take part.
Thank you, “Numerous people”, whoever you are!
So. I did as I was told and this is what I came up with: National Flash Fiction Day – Rachel Carter
And then, what?
Well I looked at me on the site just sitting there and saw that other people were doing things in their own area, and I wondered what things a shy person like me (with no Credentials) could do in my own area?
By mid-February nothing much seemed to be organised for the South West and, noting that it was only 12 weeks until National Flash Fiction Day, I felt a bit guilty. So I decided that the least I could do was provide an online place where people from the South West could send their flash-fiction. It would be a way for writers to showcase their writing whilst also publicising National Flash Fiction Day and awareness about the genre.
I emailed Calum again and said, ‘How about I do this thing I’ve thought of?’
And he said, ‘Yes! Do it! Let me know if you need any help.’
So I did it.
I wrote a blog post and asked for readers and writers and 15 people offered to be readers immediately and people started sending stories immediately and emails were coming in every day and Calum promoted it on the site and people started trusting me to do this, to get this sorted, and – whoosh – I did it.
I did it.
I said if there was enough interest I’d make a published anthology (Interviewer: ‘I see. Have you ever done anything like before, Rachel?’ Rachel: ‘NO!’) and there was enough interest and the readers kept reading and the writers kept writing and I kept sorting and flapping and emailing and squeaking, ‘Help!’ and. And we made an anthology.
I did it.
We did it.
I’ve made mistakes (at least 3 people are nodding their heads now…) and I’ve learnt a lot. But, above all, I’ve learned that people are prepared to be helpful, supportive, reliable, and to be all those things for free, for nothing, simply because people like to do good things, to be part of things.
Thank you to those 15 readers who stuck with it – you’re amazing, thank you to all the writers who threw stuff madly down the Internet into my email inbox – including brand new writers and experienced, published writers! – thank you to all the people who have been available to reply to my strange, flappy emails: to my mum, to Martha, to Pete, to Gail, to Calum, to Elizabeth, and to Natalie ( – the world’s best retweeter!).
We did it. We have a flash-fiction anthology, written by writers from all over the west country to celebrate National Flash Fiction Day 2012.
This is my “reject” flash-fiction that I wrote for the Flash-Fiction South West anthology* and submitted anonymously. The readers put it through but, as editor, I rejected it on the grounds that it was not quite good enough!
Oh, the thrill of wielding my own power over myself! ;)
This one was more like his mother, he noted, tasting ironing starch on the air and inhaling the heady commercial washing powder aromas rising from his crisp shirt as he tightened his tie. He didn’t have to do anything for this one.
He thought back to the times he used to take breakfast up to his first wife in the mornings and the way she planned her gardening jobs in bed, her soil-ingrained fingers curled around the tea-stained mug; long, dark whorls of naturally moulted hair decorating the pillows and un-vacuumed carpet, washing left uncollected until the weekend.
These days his dirty underwear, toilet splashes and still-warm, half-drunk coffee were disappeared before he had a chance to feel mortal. Artificial scents masked the “real” and the repeated pish, pish of ‘A hint of spring breeze’ into the air replaced opening a window. Vases of plastic flowers sat watching Gardener’s World with them each week, while this one tutted at the women with filthy fingernails.
‘Just like “she who must be obeyed” hey, Tony?’ She would dig him in the ribs with her elbow. ‘Just like your ex with her filthy boots in the house and inability to do her own laundry or cook a decent meal.’ Echoes of his mother’s ‘Above and beyond the call of duty – what you do for that woman.’
Now the slap on the back of the hand, dressed up as playfulness, when he was caught making a sandwich in his own zero-point-zero-zero-one-percent-chance-of-germs-kitchen.
Now the silence of invisible glass doors, once noisily, nosily marked by playful dogs.
Now polishing the cooker hob with a tissue for fear of being discovered if he fried an egg when she was out, and hiding the frying pan before it could be used in retribution.
Oh no, he didn’t have to do anything for this one.
He didn’t dare.
As he walked to the bus stop the crack of his backside itched, raw with dermatitis.
(*The chosen flash-fiction, written as our contribution to National Flash Fiction Day can be read here: flashfictionsw.co.uk)
Turn off your TV until further notice
Turn off your radio until further notice
Don’t read any papers or magazines until further notice
Completely avoid Twitter, facebook and all social media until further notice
Don’t have a job until further notice
Don’t have a family until further notice
Don’t have friends until further notice
Don’t go to any place where other people might be until further notice
When at home keep your doors and windows firmly shut until further notice
Wear headphones or use other devices to drown out the outside world until further notice
Become middle class until further notice.
Do not travel along a street – any street – by any means until further notice. (If you really must get somewhere by means of passing buildings, get someone who can cope with the risk of seeing St George flags or overhearing Tvs to drive, lie in the back of a car with a blanket over your head, wearing a spacesuit, listening to The Best Most Relaxing Not Football Sounds Ever, Volume Eleventy at full volume.)
Be aware that if you go for a quiet walk in the countryside, even there, other people may suddenly appear who may be wearing football t-shirts, talking about football, playing football, listening to football on their radio or just generally exuding a painful air of football enthusiasm.
And on the beach could you cope if someone criss-crossed your raspberry sauce across your vanilla icecream? Think about it.
On Monday 14th July 2014, you may take off your headphones and open your windows a little.
You may stop being quite so middle class. If you ever were…
You must, however avoid all media for at least 2 more weeks and then you may phone a friend and ask them if it’s safe to come out yet.
Spend 5 weeks finding out about really important things that happened in the world, and which you really would have like to have known about had not the whole world’s media gone completely mad.
Start eating icecream again
Decide whether to keep the spacesuit.
#AutismisNotaCrime Flash Blog
My Asperger’s is quiet, reflective, loving and observant. I love her very much and I’m glad we found each other. I feed her with photography, facts, creativity and words; nature, plants, flowers and open air; projects and quiet time.
What do you feed yours?
People with Asperger’s and Autism are suffering – again – because of the way lazy media write about us ignorantly.
As Gretchen writes: ‘Stop spreading lies … for the sake of a headline.’