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Autism Reframed

#AutismisNotaCrime Flash Blog

Autism is not Unfriendly Twisted Inhospitable Sociopathic Monstrous

Autism is Unusual Thoughtful Introspective Sympathetic Mindful
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?


This flash blog was prompted by this post by Gretchen Leary: Flash Blog: Autism is Not a Crime and very much inspired by this post: #Autismisnotacrime Flash Blog by Musings of an Aspie

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.’



An Aspie’s Guide To Organisation

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I wouldn’t say being an aspie means it’s always difficult to focus and achieve things. In fact, when there’s not too much else going on and the job in hand is full of attractive challenges and potential rewards, then I’m very focussed and very hardworking indeed. If I’m going to do something, I’m going to do it!

It’s when there’s a lot of general stuff to do and most of it seems fairly important and I’m not sure where to start that the problems begin. I can even lose sight of the fact that having a shower and getting dressed and putting my contact lenses in is the best place to start!

And with a home and a family, it’s really important that I try to keep things ticking along in a safe and hygienic and practical way for everyone.

So I list. I list like there are two of me: One that knows what needs doing and one that is simply going to follow orders.

My friend and Part-time, Accidental, Occasional Therapist of Sorts With No Strings Attached Who I Try Not to Bother Too Much But Who Has Lots of Experience and Whose Instincts I Trust (aka Elli), suggested different lists. I realised I was already using more than one list at a time but I had thought I was disorganised for doing that. Now I know that’s actually a good thing to do, I’m doing it professionally.

She suggested a simple list of 3 for days when you don’t know where to start and you need to get things done.

List the three most important things you need to/should do now, then do those 3 things and only those 3 things, then get back to your list, cross them off and write another 3 things. It works!

I find there are some days I have to do that with really simple things like remembering to eat and shower and dress (not that I have forgotten, per se, just that I’m not actually doing them because I’m letting myself get distracted and losing time). Other days I need to focus because of anxiety and what I need to do to cope with other people, and remind myself of the important things before someone arrives at the house, for example. That would usually be to make sure the loo is clean and the dog is walked, and the kitchen doesn’t stink. But I’ll feel overwhelmed and wander off and the anxiousness about a visitor will make me want to lie down and do nothing – which I can’t do so I’ll just walk around and around in circles seeing chaos instead and get distracted by irrelevant things. This is when I make myself make a list of 3 and look and it and then I can think ‘So what? That’s doable!’

There are general things bothering me all the time. These things keep me awake at night. So I have a diary-style planner with lots of columns for writing down What’s Bothering Me Lists. These are longer-term goals that I can achieve over time and cross off the following day, week or month, and look back and see that I am achieving; I am getting things done. And I have daily lists that are all things I’d like to or have to get done that day. This will include work I have to do for the shop, like paying bills, wages, emailing people, etc., washing school uniform, and jobs in the veg plot. I often re-write lists once I’ve got everything down so that I make sure to do things in order of importance. That list of 7 things in the photo is all a bit much for me to take in, I’m already finding the need to re-order it starting with the 3 most important things.

Often I will use a separate notebook for a separate subject, i.e. I will use one just for gardening. If I’m having a particularly difficult day when everything bothering me has combined into a great ball of confusion, I separate things out and compartmentalise them.

It must seem so time-consuming (it is!) and boring to people who don’t suffer with prioritising, and many people will have done most of the stuff on my list before I’ve finished writing it. But it does work and it does remind me that I am succeeding and helps me feel that I am coping. A sense of achievement is important when it feels like everyone but me in humanity fits the clocks and routines and modern habits of society, yet I’m floundering without a purpose in my own timeless haze.

When a perfectionist gets things done (as far as I’ve noticed so far, all aspies are perfectionists), he or she can reward themselves with things they wouldn’t reward themselves with normally: sitting down with a cup of tea, reading, going for a walk – whatever pleasure they might have been denying themselves because of the pressures of trying to work out priorities and getting things done.

I’ve not listed much this week and I’ve noticed a bit of a downward spiral in my behaviour and achievement. The jobs have piled up and I can see how that’s impacted on my husband. So I wanted to write this down and share with others how important and helpful it has been to me to write lists, in case anyone else suffers from the same anxieties.

The physical thing of drawing a line through finished tasks and seeing them gone is a really therapeutic thing to do if you suffer from prioritisation anxiety and confusion.



My Big Emotional Window

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One thing Asperger’s has given me is an openness and honesty that I’m learning to embrace after years of wondering why I felt everyone else was so closed. It’s a myth that autistic people don’t like relationships and socialising. The reality is that for people like me, relationships have to be real and deep and meaningful. Knowing someone a bit and not talking about much and never going any further than small talk seems pointless. I never understood, until recently, why some people never tell me anything about themselves – or at least, not anything deep so that I might look into their heart and truly know them. How else can you know if you want to use up your precious energy and give time to someone? If you want to know me, I’ll gladly give you a window into my soul.

Once I decide to trust you, that is.

When I meet someone new, I am guarded, often quiet. I am very anxious about what I should say and what we will think of each other. When I told the psychologist I couldn’t cope with picking up our daughter from school and didn’t see why I should be friends with other mothers at the school simply because they were other mothers, the psychologist said that wasn’t normal. She said most women relish the opportunity to have a chin wag and a catch up. But I can’t risk finding out that we don’t have anything in common and I don’t know what to talk about if it’s going to have no meaning. And I can’t risk being so overly honest that they run a mile and that makes situations awkward for the rest of our daughter’s schooling. So I stay away. The rules that other people were born with are not the same as the ones I was born with and it’s too exhausting trying to learn and implement them all the time. Often I feel I should have a calling card or wear badges with lots of facts about me then people can choose whether they want to find out more! Maybe AS people should come with a list of instructions, one of which should be: Total honesty at all times unless it’s offensive.

I don’t know if this is why we have meltdowns, but I’m willing to bet it is one of the reasons: that the exhaustion from trying to be appropriate for each situation and the constant state of anxiety involved with performing for others probably has something to do with it. Chit-chat and what I call “light socialising” are natural apparently, but for me they are a tiresome act, a fatiguing performance, and some days I’m all out of scripts. I couldn’t find it more unnatural and confusing.

Take a simple greeting like, ‘Hello. How are you?’
My autistic instinct is to take that at face value and think about how I am and then tell them:
‘Well, I didn’t sleep well last night. I woke up at 3am and lay there feeling guilty about my shortcomings as a mother and feeling stupid for drinking a bit too much red wine. When I got up I felt drained and headachy – and I’ve got that itchy inner ear thing you get when you’ve not had enough sleep – do you get that? So, anyway, I’ve taken some painkillers and a good vitamin B supplement, which seem to have helped. I find various different supplements helpful despite the bad press they often get. I take starflower oil for PMS – but I take it all the time because I never know when my period’s going to start these days. They’re getting earlier and earlier. I must be peri-menopausal. You know starflower oil comes from the borage flower? It’s a beautiful plant. Bees love it. They really do seem to like blue flowers… I’m feeling a bit troubled and unfocussed this week. My diet and exercise regime have gone to pot and I’m not getting out as much as I’d like. It sounds crazy but I really do feel more autistic some days than others and today I have become obsessed with the phrase “one in a million”. I can’t help thinking it’s a bit of a misnomer because it’s used to describe good people – remarkable people, and people who go out of their way to help others. That would suggest there are only 6 such people in this country and I find that highly unlikely. There are plenty of good, helpful wonderful people. It would be better and more accurate if we used the term “one in a million” for serial killers, surely?
Richard’s working all day today, so I had to walk the dog on my own, and while I was out there were massive black clouds heading towards me from the east. Usually I panic at the thought of getting caught in heavy rain but today I was really rather calm about it. While I was walking I spotted a sweet little lavender-coloured flower in the fields. It was upright with a curling, fern-like head. So pretty. Any idea what it’s called? Do you know about wildflowers? I’d love to have a friend who knew about wildflowers. Anyway, luckily I had my camera with me and took a few photos. When I got back to the house, I found the cat had taken her bell collar off that I’d spent ages getting on her, so I was a bit fed up about that and a few seconds later she walked past me to go hunting for birds in the hedge so I followed her and somehow managed to get it back on her. Do you like cats? I’m always so relieved when I find people who agree with me about how much damage cats do. I picked some fresh leaves out of the garden for my lunch and that always makes me really happy: spinach, lettuce, chives, pea shoots. So nice to be growing your own food. I get a real kick from it. I must admit I’ve been really troubled by the European Elections this week and all the coverage Nigel Farage is getting. The polls suggest Ukip are going to do well which is crazy and scary. I really don’t think most people have thought this through. To be honest I don’t have a clue why anyone would vote anything other than Green. Unfortunately this kind of social worry is a big one for me and I tend to get very anxious thinking about people’s stupidity and the knock-on effects for everyone, particularly minorities… So, yeah, I feel rather troubled. And I’ve been thinking a lot about autism and Asperger’s recently and am a bit obsessed with that and wondering who else in family could have it and whether my dad had it. I keep thinking it would have been nice if he could have read about it – some of the more recent stuff and thought about his own struggles in life. It’s really quite sad…
Oh, you didn’t mean that kind of “How are you?” You meant the one where I don’t tell you how I am! That one always throws me.’

And I end up smiling, nodding and saying nothing.

Mystery Wildflower

Mystery Wildflower


An Open Letter: Dear Family and Friends, Why I need to live as an Aspergirl (or a woman with Asperger’s Syndrome)

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,

Rachel



Zoom in

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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


Just The Way You Are

IMG_1540Something interesting has been happening to me over the last few weeks.

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…



If You Think You Know Autism, Think Again

shutterstock_167168468What 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.




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