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Songbird

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They see a disorder
I see this order

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


Waiting, Waiting, Waiting…

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My Asperger’s assessment is now only 2 weeks away. Oh, how I wish it were today.

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.




Mute

shutterstock_169863227I’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.

Eventually.

At least, I hope so.


The Toast Burners

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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/

So…

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.


😀


Walking Away From My Breakfast

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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…
Toast anyone?


I Fooled You All

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I kept my house clean, I kept my kids clean.
I did my washing, I made the beds.
I remembered birthdays. I dressed up.
I smiled and I laughed.

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.’
‘Another drink.’
‘Drinks at ours!’

Maybe next time?

Please say there won’t be a next time.


I can’t


Talk


Anymore.


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.


Truly, Madly, Autistically

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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.


Please May I Have a Bit More Nothing?

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I’m still. But I’m not still. There’s a rhythm playing on my breath. I stop it and catch it in my teeth. The toes of my right foot play the beat that matches the rhythm.

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.



The Assessment Fear

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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.

Won’t they?

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)


Why the Label?

shutterstock_169863227What’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.

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