Journeys to the end of your psyche

Wednesday, January 21st, 2015

There are a lot of things they don’t tell you when you get your Autistic Spectrum Disorder diagnosis.

They don’t tell you about the shame and embarrassment at being other and different. And a whole lot of other negative things too.

But they also don’t tell you that you’ll be going on a journey. And it will be a really long one. That there will be mountains to climb and dark fog filled valleys to navigate. That there will be multiple epiphanies and it will change you, your partner, your family and your entire life.

You start to know things. Really know them, instead of people telling you them but the reality not actually sinking in. You start to accept things, things that used to be hard, become suddenly easy.

You start to know your worth. Because suddenly you’ve stopped measuring yourself in comparison to everyone else who has a different brain to you and you start measuring yourself against yourself. And you suddenly find that you’re not wanting. You’re not stupid. You’re not horrible and you’re not crap. You’re just different.

After a longer while you get to accepting that different is actually awesome. It gives you things others don’t have. Different perspectives, different rhythms, different hearing, different sight, different everything. And if you decide to see that as a positive thing, that’s where your career can come from – from playing at the edges, from saying things that you see and seeing them differently, from seeing straight through bullshit and calling people on it, from seeing beautiful patterns and colours and recreating them exactly.

Even after that, you might come to know and understand that everything balances. That for every single thing you cannot do – people, noise, surprises, unexpectedness, lack of routine, exactness  – there is conversely something that you are awesome at – online communication, writing to make people think about what they think and why, challenging status quo’s, crossing streams of thought to create new thought, creative stuff…

None of this comes straight away. You have to climb the mountains of despair and shame and hopelessness first. And it’s almost like you have to climb those mountains in order to get to the quiet even plains which contain no moutains or valleys at all, only consistent endless calm and serenity.

My brain was full. A diagnosis and the ensuing counselling have given me emptiness and quiet. There is so much quiet in my brain that I am protective of it, defensive even. And I come to know that this is what others, the neurotypicals, are born with, a defensiveness of that quiet and calm, an evolutionary inbuilt knowing that we are perhaps not born with. Or is it that we’re missing the limiter? That we know no limits and so we stuff our heads fuller and fuller, wishing to know all the information, all the data, our curiosity driving is further and further down the road of a brain so full it will inevitably eventually explode?

I have no limiter. So I have to be super careful about my brain, about keeping it well, keeping it empty. I have learned that I can stuff it full, of learning and conversation and thought, but at the end of each day I must determinedly think of something else, anything else, and not of the subject I have been stuffing my brain full of during the day, in order for my brain to do its thing, of working through all that input and discarding the irrelevances. It works for me, I don’t know if it will work for you. But it means I start each new day with space in my head ready for the new learning and curiosity and enthusiasm that being a girl with ASD inevitably brings.

Without a diagnosis I would have had none of the bravery it took to establish these things about myself. Because diagnosis is the foundation, a firm and immovable fact, upon which I can build all these coping strategies and techniques.

My brain is faster. My intellect is probably wider, I don’t know I don’t have a term of reference. I suppose I am gifted? I don’t know. I do know I can pick up a book on almost any subject in the entire world, consume it and then summarise it, explaining the core principles in terms anyone can understand. It doesn’t matter what ti is, I can learn it. My speed of learning is accelerated, I can pick up something like crochet or knitting and become good at it far faster than most. There isn’t a su doku puzzle I can’t do (though there definitely are crosswords) but I can’t do maths. I can close my eyes and visually recall almost every thing I have ever seen. I can read a book before bed and reread the 20 pages I’ve read after I’ve put the book down and closed my eyes. I didn’t learn to do any of this, and until very very recently had no understanding not everyone could do these things. I assumed everyone could. I assumed everyone could keep up and assumed the failure was entirely mine when people couldn’t, that I was the reason people were always confused.

I’m not. I’m just faster/make different links/make links faster.

That’s not my fault.It’s not a fault. It’s just that I need to spend a lot of time explaining things to people. So what.

I used to think I was a freak. I still think I am. But the difference is, that after 12 months of examining, analysis, careful consideration and quiet contemplation – I’m a freak and I don’t care. I used to get depressed because I felt lonely. Because I felt different. Because I felt everyone else found life so easy and I didn’t and what the hell was wrong with me? Because I couldn’t sleep properly, because I couldn’t go to bed until I’d finished the thing I’d started, because I was anxious and panicky and didn’t know why, because people didn’t like me and I didn’t know why.

I know all these things now. All of them and more. I know all the answers to the things which used to worry me and the okay so the things I don’t? Well I know how to minimise the anxiety. I know how to soothe myself, how to cheer myself, how to calm myself. I know how to ask for help but also how to decline help and I’ve abandoned the millions of scripts I was trying to learn on the fly, and instead accepted that sometimes, I will say the wrong thing.

Worse shit happens at sea.

I’ve learned to cut myself some slack. I’ve learned when to disclose and when not to. I’ve learned to modify my behaviour in some situations so it doesn’t draw attention, but also learned when and where it’s okay to not worry about modifying it at all.

I’ve learned freedom and serenity. Bravery and warrior ways. But most of all I’ve learned that I am special in terms of the ‘special bus’ but I’m also special in terms of there is no one like me. I’ve learned to laugh at my synaesthesia, and to celebrate my brain.

Hi. My name is Louise. I am autistic. I have the most amazing brain. Sometimes I still get depressed, but not very often at all. Sometimes I have anxiety attacks but as long as I can work around these by avoiding offices and busy scary situations, most often I don’t. I am smart, intelligent, fast, funny and silly. I have a personality which autism is a part of but which it doesn’t actually define.

I am me. I am happy. And no one is ever going to take that away from me again.

Sell nothing without rainbows

Saturday, November 29th, 2014

Twitter is a funny thing. It’s my lifeline to the world at the moment. I rarely interact with anyone that isn’t a medical professional of some kind except on Twitter.

This evening something interesting happened. Someone asked what Plan B looked like when you had no particular special interest or talent. And I replied, because I think I have a part of the answer.

That in itself is quite weird except when you remember that I’m rubbish at anything I’ve not experienced myself. But this I have. I remember all too clearly what it’s like to feel like you’ve nothing to bring to the table, nothing unique, nothing special and nothing valuable.

And that’s when I realised counselling has given me something far larger than the individual things which I knew it had given me – how to manage my anxiety, how to find my quiet and my calm, how to make interactions better, and how not to crucify myself for not being perfect every minute of every single day. Which I will blog about at some point because it’s important and evidence – evidence of what counselling can give you if you see the right counsellor. In my case a counsellor trained in dealing with people with ASD.

It’s given me my self. Because you see, counselling isn’t easy. It’s not. It requires you to think, really think, about who you are, how you react, what you feel and think and experience, every single moment of every day. For those of  us with delayed processing (definitely me, suspect most people with ASD) it happens when we’re sleeping or while we’re doing something else entirely.

Somewhere in there will be epiphanies. About our behaviour, our self, our relationships, our unique selling points. And inside all of that lies confidence. A sense of knowing that you are indeed unique, life is indeed rather challenging on a day to day basis, that yes you run out of underwear frequenlty but can understand the most complicated of equations easily…but that you bring something to the table and because of the unique way your brain is wired, chances are it’s super unique.

For me, it’s rainbows.

I wear my heart on my sleeve. I can’t hide emotion. It’s on my face, in my words, in my writing and in my heart. Emotion is what I run on, and whilst understanding that I must balance this with intellectual processing when it comes to reactions to life (again, I’ll come back to this, it’s important), it is my unique selling point.

I’m trying to set up an online business. Predictably, it works to another USP of mine, my sensory sensitivity. Specifically, wool. Making wool into yarn, dyeing yarn into ridiculous colours, then making something with the yarn which is utterly unique due to the prior two steps of the process. One of a kind items, just like me. And because I spin with my heart, dye colours based on my emotional reactions to them, spin with a sensitivity that means I can do it by touch alone without needing my eyes, it results in something which I think people react to emotionally.

And that’s my USP. Spinning rainbows, playing with colour, crocheting and knitting rainbows into things special people can wear. It might work, it might not, but in the new world economy of social, it seems to me that people can tell when you’re genuine. I am, if nothing else, genuine in everything I do because faking it isn’t impossible but frankly I don’t have time for that shit.

No. I spin rainbows. And you know what? I do that, not despite what and who I am, but because of it.

I think it’s about time we all started spinning some rainbows of our own.

Sometimes it’s like being hit in the face

Wednesday, April 2nd, 2014

Sometimes it’s like being hit in the face

Every now and again you watch something or read something which has such a profound affect on you, you want to literally jump up and down and scream as loud as you can ‘this, watch this, this is how it is, this is the truth, this is reality, not your bullshit, not your cure focused solutions, not your determination to portray as as a problem to be dealt with’

This video is one of those times. What do I see when I watch this video? Myself. But I also see The Invisibles. The passed over. The undiagnosed and unvalidated. The left alone to stew over why they’re not coping and struggling so much. The ones it feels like a society within a society has abandoned completely. Girls with Autism. Any kind of Autism. If there’s a kid in a disabled programme on Channel 4, it’s a boy with autism. If it’s a campaigner making their voice heard loud and proud, it’s a boy. If there’s a face on a poster, it’s a boys face.

Even the silhouettes, the moody ones on beaches looking out to see – the silhouette is a boy.

This video does exactly what autistic girls are really excellent at doing, given half the chance which we often aren’t. It quietly, gently, and in a slightly quieter than entirely comfortable for the ‘nt’ listener volume states the truth. It’s not a comfortable truth. It’s not easy to listen to. It involves young girls being physically deposited in classrooms and their mothers then running off – not a nice scenario but one enforced by a structure of education which fails to understand the difference between wont attend full time education and cant. It talks about girls self visualising as big black dragons, breathing fire on all the girls around them, of anger and pain, frustration and uncontrollable feelings being expressed in scary and heart breaking ways.

There’s no drama. There’s no raised voices. There’s definitely some tension in the room when the girls are all sitting around the table but I’m good at detached analysing of social situations I’m not a part of. It’s easy to read crossed arms at a distance. And I don’t have to make an on the fly decision about how to deal with that. But what amazes me, and gladdens me, and makes me want to cry is that in that room, there is one, count them just one girl who visibly and almost audibly doesn’t want to be there.

It breaks everything you’d ever have imagined about autistic girls. In fact, no, scratch that, that video breaks every pre-conception of what an autistic girl is completely.

Eloquent, smart, calm, studious, still, thoughtful….

I know these words. I see them every day on Twitter. But for the love of anything and everything can we please give more girls their voice? Cos you know, if you stop to listen, smart, eloquent, calm, studious, thoughtful – those are all things we need, as a society, as a culture, as a country. If you dismiss those girls on the basis of a lack of social communication skills, and I have no doubt some of you would, and will, and have done in the past, then it’s you that is stupid, you that is ignorant, you that is lacking in empathy and you that frankly are missing out. 

Yours, the girl who looked in the mirror in a video and has absolutely no doubt now that has been correctly diagnosed. 

Why being Autistic (Aspie) rocks

Wednesday, April 2nd, 2014

Today is National Autism Awareness day. In the UK we are lucky enough to have a wonderful charity called the National Autistic Society who advocate for us, celebrate us, educate us and generally do what a charity who listens to its membership should do – be on our team. It’s something I think a few of us take for granted and I wanted to take this opportunity to mention how lucky we are. Thanks guys.

As it’s ‘Autism Day’ it seemed like good time to flip things around for a bit. It’s quite hard being Aspie. I’m not for a second saying it’s not, nor am I trying to minimise the daily struggles we all go through whether that be in our childhoods or later in life when things all become a bit incomprehensible and difficult to deal with. But there are up sides, or at least for me there are, and I suspect I am not alone in this. 

So. Why does being Aspie rock?

  • The way we see things is not the way other people see things. Confusion and crossed wires aside, this can be awesome. Take nature. We notice the details. Someone once said God is in the detail. Now I don’t believe in God but whoever or whatever, I notice the little things. I can go for a walk any time, any where, and be endlessly entertained by the things I see. From ladybirds to droplets of water trembling on a branch, from budding blossoms to a butterfly flitting around, from a bird swooping above stalking its prey, I can walk around a corner and more often than not end up frozen to the spot desperately trying not to interrupt the wonderful dance taking place in front of me. Yes I’m heavy footed and yes I often don’t realise how loud I am talking, but even then there is so much beauty outside in the world that I’m often glowing by the time I get home. Not everyone gets this. It’s a wonderful wonderful thing. 

ImageImage Credit: Rex Boggs via Flickr

  • Photography. I like to take pictures. I like to share what I’m seeing. Instagram and my iPhone are my two closest friends when I am being brave enough to go outside and interact with it. I love to share what I can see. I can’t take awesome pictures, I’ve not got the patience to learn apertures and stuff, but I do see things that other people don’t notice and I’m often told when other people have been to the same place as me that I’ve caught an angle or a person or a detail that they’ve never seen. That’s a cool thing. Sharing that is even cooler – because it’s a window for other people into my head and the fact that the world simply doesn’t look the same to me as it does to them.
  • Enthusiasm. Not so much at the moment but when I get enthusiastic about something, I really get enthusiastic about it. It’s the special interest thing I guess. But people tell me that it makes them smile, that it cheers them up. And so the thing that a lot of people see as a negative thing about being aspie or autistic, well depending on who you are, that can actually be a plus point to someones personality. That bouncing up and down you do in your head when you find a new item for your collection or see a new engine you’ve never seen before – try and share the bouncing up and down as well as the new item. It seems a lot of people think its a bit dumb, but equal amounts of people don’t. And it’s something I actually really like about myself. I know I can be too full on, I know I can be too much and it’s one of the things I am trying to throttle back on but enthusiasm is happy, to me.
  • Music and synaesthesia. Or a thing that’s something like synaesthesia but isn’t. I’m not sure. It’s not something I’ve really told anyone medical or professional about cos it’s never come up. But music swallows me up if I let it. Nope, that’s not it either. I become liquid. I disappear. My sense of self disappears and all that’s left is the music and the colour. Lights as in lights at gigs trigger it and it’s something that again I am learning to control as when I couldn’t it could sometimes be scary. But there is something so nice about the warmth that a lot of bodies together in a small space generate, combined with the lovely patterns in the music, combined with the lights which are there when I close my eyes. If I let myself I can disappear into that place for hours and it’s the nicest, safest, best place in the world. It’s not lost on me that my version of that doesn’t involve other people. Yes that’s a down side. But it is what it is and I wouldn’t swap that wonderful lovely feeling of twinkliness, not for anything. 

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Image credit: Omnitographer via Flickr

 

  • Patterns and pattern recognition. This is a weird one. You’d not probably be able to think of a negative scenario for this one. Except of course when your spatial awareness is tied into this. It means car journeys can be terrifying when I can feel a change in the road or our traction or we aquaplane or something else happens. I can feel it, almost before I can recognise it. It also means I can recognise immediately a break in flight patterns for example, so when we fly out somewhere and one sequence happens, and we return and a different one happens, I get very very anxious because I know something is wrong way way way before anyone else. Now I suppose that means I’ve got a heads up, but it’s not a heads up I particularly like having. But this is also a massive positive as it means I can ‘read’ situations through pattern matching as well. In big crowds I am excellent at avoiding pinch points, bottle necks and crushes. I can spot pathways across fells and fields from a mile off.  We never got lost even in strange cities as I am constantly sub consciously pattern matching and way marking for us. Sometimes I can get lost in the patterns especially intricate strapwork on ceilings and sometimes it’s quite difficult to come back out of the obsessive pattern tracing around and around and around but mostly this is something I love about myself and it has meant I have been able to have good jobs which I have enjoyed. Data wrangling and pattern spotting but also error spotting is something I am exceedingly good at. 

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Image Credit: John Marshall via Flickr

  • Connecting with other people who are….. ;’different’. It feels like there’s a club. And you’re in it. Just cos of the way you were born. No effort required. No pretending. No masking. You just belong. It means I’ll sit next to people on the bus or train other people wont. It means I smile and get smiles back. It’s the twinkle equivalent of a handshake. ‘Hi, my world is slightly different, looks like yours is too, hi’. It’s always been there and it’s not something I understood until very recently. It has comforted and helped enormously. I wish now I could go back and say thank you.
  • Magpies and stroking. I love shiny twinkly things. I am a magpie. But I also love textures and colours. I’ve recently started crocheting and crafting and the mix of repetitive movements and wonderful textures and sensations of the yarn as it passes through my fingers – its a visceral pleasure but it’s also my anti-anxiety pill. And it works because I am me. And it might be something I can make a bit of pocket money from. And I wouldn’t love it quite so much if I weren’t just a little bit…aspie.
  • Words. Yep, I believe the only reason I can write a bit (sometimes, when the wind blows right) is cos I’m aspie. Because words are patterns and I simply make them march in a nice neat order. If you read my writing it has a rhythm and a pattern to it which replicates over and over again. Just like that over and over. I can’t say that a thing is just a thing. It will often be a thing and then another thing. It’s part of a pattern and a flow and somewhere in there is the key to just making the letters march in a certain order. Sometimes people tell me I make them feel emotion with my words. Sometimes I felt no emotion at all when I wrote the words, and sometimes I intended to make people feel an emotion. I am not entirely comfortable with the ability to make people things that I don’t appear to be able to feel myself but that’s something for another day and is about responsibility which I do take rather seriously.
  • And finally, connections. People are a nightmare, frankly. But they’re also kind of awesome. And being aspie and understanding what that is and how that affects me has meant I have met some amazing people. Well Twitter met in a lot of cases. But then that’s a thing I suppose too. I think aspie people connect with people in a way that is unique. Trust is hard gained but once it’s gained it never goes away. Comfortableness is almost instant because the normal social niceties are skipped entirely. There is a quietness in the way aspie people talk to each other but there is also masses of enthusiasm, thinking, unravelling, unpicking, problem solving…some of the most joyeous conversations have been with other aspies as we share how we feel, realise we’re not alone and leave those conversations stronger, more centered in ourselves, and owning our own self far more. 

There are lots of other things. I know that’s hard for parents to read. I know it is. But the way someone sees the world is personal and unique. What is beauty to you isn’t beauty to someone else. Nothing makes me happier than order and neatness. But nothing makes me happier than chaos – it’s just that I’d rather each of those things existed where it was expected to and not where it wasn’t.

So I guess, what I’m really trying to say is, yes I’m aspie, but I’m also autistic. Yes I function in some ways but I really don’t in others. All of it’s invisible. But all of the plus points are invisible too. So do me a favour? Go on a bit of a digging expedition. Try and find out what it is inside someones head which makes them smile, clap their hands, twirl and laugh. If you can find that, life wont look so black any more, and it might even end up being rainbow-like.

Happy Autism Awareness Day. Because occasionally being born this way really does rock.

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Image Credit: Roy Wangsa via Flickr

 

Dear Doctor

Monday, March 24th, 2014

(Context: I’ve got a thing. No one knows what the thing is yet. It’s been a thing for four years. It’s slowly getting worse, as each time the thing comes goes away and comes back it’s slightly worse and manifests in slightly different ways. I didn’t know I was aspie when this all started, but my doctor knows I am, we spoke about it before I referred for diagnosis with her blessing and understanding. She is a good doctor, one of the best I’ve ever seen. She understands depression and anxiety and autism too and is prescribing me things to help whilst also chiding me gently when I explain I’ve been dealing with something going wrong for months and not getting around to flagging it. In short, she rocks. The monkey that follows is mine.)

Dear Doctor,

We don’t get long. I know you bend the rules so all your patients get longer because I know you’re the one everyone refers mental health patients to within the practice. That’s why I initially was sent to you, but as you told me last time you saw me, as we’ve got to know each other, you’ve come to understand that the depression is not the thing. It’s a symptom of the thing but it’s not the thing. You’ve seen me or spoken to me on the phone about 8 times now, and it’s taken that long for me to let you in and trust you to tell you the embarassing things, and it’s taken you that long to penetrate my flippancy and defensiveness to drag out of me the reality.

I know you spoke to the physiotherapist you told me to see about my back. I know I should have told you when it happened before, and I know there’s a possibility some nerves are damaged somewhere. Well I do now. I didn’t at the time. I didn’t not say anything deliberately – I just can’t prioritise the slew of things which break or go wrong on a weekly basis and so we tend to start at the top of the list and work down and we just never got to the spine thing. I know the physiotherapist asked me to rate my pain on a scale of 1-10 and I know is didn’t rate it right because when the physio pushed on my spine, my bladder spasmed, and I told the physio that and her attitude towards me changed. But she asked me to compare it to the worst pain I’d ever know and that was having a specialist burning away some cells which were growing in the wrong place in a wound I had without any anaesthetic and that hurt so bad I cried. And my back hurts so bad I cry sometimes too but it’s still not as painful. I took the physio literally. The physio appears to have spoken to you because now you seem to understand that my pain level assessment is slightly wonky too.

You maybe need to think about asking aspie people about pain a little differently. It turns out my spine is trying to bend backwards. I sort of kind of knew that – well I thought that but then I thought I was being silly and it couldn’t possibly so I didn’t say anything. Maybe it’d be cool to ask aspie bods a lot of probing questions when they’re talking about what’s wrong. If you ask us open ended questions we tend to womble on directionless for hours hoping we’ll hit on what you want to hear eventually. If you ask us closed questions, we know what you want to hear immediately. We’ll tell you that, that’s easy.

You also said there might not be an easy answer for what’s wrong with me. But we both know there’s been a slow but sure system breakdown which is slowly but surely eating into my functioning every time the thing comes back to visit. It might be there are some nerves being compressed by my spine bending backwards. It be it’s not that simple. You told me the possible name of the thing and then you said you’d refer me for a test to check for the thing. I had to tell you we’d already been down this road four years ago but you didn’t look surprised.

I’ve done some reading now. I’m not surprised either. You said you didn’t want to ramp my anxiety levels up by testing me for things unnecessarily but you also said there were treatments that you could give me if it turned out to be this particular thing. It’d be nice for things to be better, to have energy again, to be able to think again, to be able to spell and write and string sentences together. Sometimes I can’t even remember how to count. Other times I am dyslexic, except I’m not. The thing I didn’t want to talk about cos it was embarrassing, and that I finally talked about last time I saw you? I took the pills. They worked. You said they would but I didn’t believe you – for some reason I didn’t think a pill could help with something like that. I did some reading about that too. I understand why the pill works and why I needed the pill in the first place and it’s not my fault. I thought it was my fault. It isn’t.

When dealing with aspie people, I wonder if you find we blame ourselves for the things that go wrong with our bodies far more than ‘neurotypicals’? That we don’t tell you a lot of stuff cos we’re embarrassed or ashamed. You persisting in gaining my trust might mean that I get some answers – or it might not. But in you acknowledging there’s something wrong, it has helped me acknowledge it too. I’ve been berating myself over and over again for letting this thing get to me, for letting it get in the way, for letting it stop me working. I’ve felt like a complete failure for not being able to deal with the physical symptoms and the pain. I have felt like an ant carrying a large grain of sugar over a mountain – take the mountain away and there would be no problem, of course there wouldn’t, but the addition of the mountain makes this unbearable. I can’t feel so much of my body for so much of the time or can feel it too much for so much of the time it should become normal but the constant shifting – I can’t deal with change and this constant flux is flummoxng me. The pain of my back, mixed with anxiety attacks which still come and go, mixed with days when I struggle to get dressed or showered or feed myself either because I have no energy, or the pain is too bad or I can’t remember the next step in that particular sequence of events…

Thank you for trying to help me over the mountain. Thank you for getting to know someone and understanding the verbal block I have. Thank you for persisting and listening to me. Thank you for being honest with me and giving me a name to go away and learn about and for giving me fair warning. If it’s not the name of the thing all well and good. If it is the name of the thing, when the person who diagnoses me says the name of the thing, it wont  be a shock. And in doing that, you’ve understood so very beautifully the way my mind works and what would cause the anxiety in this. The anxiety is not tied to the name of the thing though it’s not a nice name and I shan’t have quite as long to dance barefoot on green grass as perhaps I’d have liked, no. The anxiety is not knowing the name of the thing, or being broadsided with the name of the thing and it being final, and there being nowhere left to go. 

I really can’t deal with surprises.

So thank you. I know you’re the mental health specialist. But I think it turns out you’re the Aspergers specialist too. 

Yours, 

The patient who writes ever so much better than she speaks

Welfare at work

Sunday, March 23rd, 2014

I’m in my mid 30’s. I’ve managed to be in full time employment since I left university at 20. Sometimes I’ve worked 2 jobs or 3 jobs to make ends meet. Sometimes I’ve temped. And sometimes I’ve ended up in jobs which are more permanent and required more from me than simple data entry.

None of my jobs have gone well.

Now that’s not to say that people on the Spectrum cannot work and work well, productively and happily. It’s not to say that people on the Spectrum with a no diagnosis can’t either.

But there is, in my mind, a special kind of hell for those of us who misstep just enough to be marked out as different, with no knowledge of why, but just enough self awareness to notice we’re very much not part of the crowd at work.

Now some people don’t want to be part of the crowd. Work is work and they turn up, do their work, bimble a bit, take a few more coffee breaks than perhaps they should and leave again at the end of the day. They’re happy because their life is outside work and they are simply not bothered about fitting in at work.

I am not one of those people.

Then there are the people who turn up, say good morning cheerily, are involved in the tea and coffee making, offer to grab lunch for other people and who stay a little later occasionally when needed without moaning and are the people who get promoted because they’re well liked, and if they’re not excellent at their job, then they’re certainly not noticeably rubbish at it.

I am not one of those people.

I’m the person who doesn’t trust anyone to be nice because experience says they wont be. I’m the  person who forgets to say good morning because  I’m so focused on which bit of the morning routine I’m currently acting out. I’m the person who is not good in the mornings and isn’t cheerful and is incapable of pretending to be so. I’m the person who avoids the tea and coffee making because the effort required to remember who wants what, and the manual dexterity needed to carry the what to where is just so much it can take me 30 minutes to make 5 cups of tea. I’m the person who sits at their desk with a list of tasks and works through them til they’re done. And then talks to people. I’m the person who doesn’t leave their desk until the list of tasks is done for the day because my brain wont let go or switch off. I’m the person who doesn’t stop to chat around the coffee but will stop to chat on Twitter. I’m the person who doesn’t quite wear the right thing because I’ve gone for comfy and not for smart. I’m the person who forgets to polish their shoes because shoes are functional and not for display.

I’m the person no one wants on their team.

I’m the person who is bullied. Ostracized. Left out of social invites, and left out of anything it isn’t mandatory to invite me to like Xmas meals. Which I’m so tense throughout waiting for something to go wrong or for something hideously embarrassing to happen to me that I’ve never once enjoyed. I’m the person no one wants to get stuck in a lift with or walking down to lunch at the same time as. I’m the person no one wants to go for a drink with after work, and if you see me in town at the weekend, I’m the one you pretend not to see, and if circumstances force you to acknowledge me, there will be a hello and an excuse to move along quickly. I’m the person no one wants in the meeting because I ask awkward questions. I’m the one who takes the minutes because it shuts me up. I’m the one people skip any other business because of. I’m the one co-workers write letters to and then sit in front of and read them out to because I’ve somehow upset them so much that they found this necessary. I’m the one who doesn’t get appraisals because it’s always too difficult and too awkward for my manager to face. I’m the one who ends up with three managers because one just can’t face it.

Work, up until this point in my life, has been by turns stressful, agonising, panic inducing, anxiety inducing, insomnia inducing, hand wringingly, painfully, migraine inducingly awful.

You wouldn’t treat a dog the way I’ve been treated, cumulatively over the years that I’ve been in work. My self esteem is rock bottom. My interest in working to earn other people money and praise and promotions is rock bottom. My faith in my finding a job where none of this will happen is rock bottom.

I don’t understand why I should be forced to put myself repeatedly into situations which damage my mental health and make me want to scream and scream and scream as  I watch the same things happening over and over again with no desire, actually, to put all the effort it would require in to make sure it didn’t happen over and over and over again.

How much can you expect one person to work on? What is it reasonable to expect of someone to work on themselves and change everything about themselves? How much energy and concentration do you expect is reasonable for a person to make in one day to make sure they don’t piss someone off, yet again?

I’m exhausted. Utterly and completely exhausted. And terrified, frankly, of going back to work. I don’t want to. I really really really don’t want to. And that might change, I might feel more resilient, I might feel like I can start to work on the entirety of my personality which pisses other people off to the point they need to write me detailed letters telling me how I am a complete bitch – but what if I don’t?

All I want is to work somewhere it’s okay to be me. I don’t understand why I should have to change the entirety of my personality to be treated like a human being. That balance shift doesn’t look fair to me, or reasonable.

So I’m giving up for a bit. I’m waving the white flag. I can’t do this any more. It’s driving me slowly but surely utterly insane. Meanwhile if anyone knows anywhere that accepts bods for who they are and not how many cups of tea they offer to make per week, will you let me know?

Cheers.

The Princess and the Pea

Monday, March 17th, 2014

I’ve just had one of those uncomfortable moments. You know the ones, the ones where you suddenly realise how other people must see you through their eyes, and the realisation that what they see, and the assumptions they inevitably will make are so far from the mark – but you’ll never get a chance to challenge those assumptions because people whisper them behind your back instead of speaking them to your face.

What other people see:

Me with my headphones in on a plane, sat next to the window but not looking out of it, my partner completely ignored apart from when he leans over me to get a look out of the window.

The assumptions that will be made:

I am a princess. I am taking up a seat next to a window on a plane that obviously my partner wants more than I do.

What’s actually happening here:

I used to be terrified of flying. I’ve got better but I still feel massively claustrophobic because I can’t get off whenever I want to. Sitting next to the window makes me feel less claustrophobic. My partner knows this and knows my coping mechanism is to disappear into my own world and try and pretend we’re not flying at all.

What other people see:

Me absorbed in my puzzle book on take off ignoring the child behind me pulling my hair and trying to see what I’m doing.

The assumptions that will be made:

I’m a bitch/cold/aloof because how can a woman possibly not find a young child cute and endearing.

What’s actually happening here:

Not even my partner gets to invade my personal space without warning because I flinch and its an unpleasant shock if I’m in hyper sensitive mode. I want to scream at the mother to ask her child to respect my personal space. I want her to shut up making those stupid kissing sounds she’s been making for the last 5 minutes right next to my ear, because this plane is getting tossed all over the place, I’m scared to death, I’m getting painful stabbing sensations in my ears and you’re just adding to the noise/sensations/uncomfortable. But I can’t. I can’t say anything because it’s a child and I’m supposed to find it cute and endearing.

What other people see:

My partner bought me three hamsters for Christmas. He spent a lot of money sorting cages and toys and making sure they were happy hamsters.

The assumptions that will be made:

I’m a spoilt princess who asked for a present which would end up being massively expensive.

What actually happened:

The research I did on the hamsters said the breed I was getting were happier in groups. So we bought a group. I did what the books said to do. Unfortunately the hamsters tried to kill each other and so one of everything turned into 3 of everything which then turned into 3 cages. We agreed completely independently that we wanted to keep all 3.

What other people see:

Me sitting at home all day doing nothing.

The assumptions that will be made:

I am lazy and don’t want to work.

What’s actually happening:

I’ve been diagnosed with a developmental disorder, depression and anxiety and have another as yet undiagnosed chronic physical ‘something’. I’m waiting for an MRI. I can do stuff like go outside and be with people. But I can’t function for 3 days afterwards from the exhaustion. You go out for one night and get drunk and have one day of hangover. I go out, don’t drink, and feel like I have a hangover for 3 days afterwards. Working one day a week or 2 if it were a Monday and Friday isn’t really feasible, there aren’t too many of those jobs around. As such I need to wait until the medical profession help me understand why I am feeling like this and help me fix it. I do want to work and am constantly trying to think of ways of making money with the skills I have. I’m not giving up, I’m giving my body space because it’s broken.

What other people see:

Me not saying goodnight to anyone before leaving gatherings.

The assumptions people make:

I am rude, ignorant, and am not worth inviting again as I obviously didn’t have fun.

What’s actually happening:

I have no warning system of incoming tiredness. I am binary. I am either fine or exhausted, there is no transition period. If I am suddenly exhausted at a gathering, the last thing I want to do or have the energy to do is go around and make even more social interactions happen, especially when it’s the social interactions which will usually have exhausted me in the first place.

You can see why people called me princess in my last job, can’t you. I appear to be a self centered, rude, ignorant, selfish person who is aloof, has no fun and is constantly ill.

Except that’s not what’s happening. Life is happening. My life. It’s quite difficult, has been quite difficult, will continue to be quite difficult. 

And once again I say, and people tell me I lack empathy.

It’s beautiful in here

Saturday, March 8th, 2014

It’s beautiful in here. And warm. And safe. There’s no conflicting voices, no demands and no difficult.

Inside my head it’s beautiful and safe and warm and I don’t want to come out. I know I should. I should talk to my boyfriend. He’s being ever so patient but haven’t really talked in a week, and bless him he is wonderful, every night he lets me curl around him, giving me his warm and his lovely protection and I read myself to sleep and every morning I wake and he’s gone and it takes me a few seconds to process the removal of something which was there and then wasn’t, in the space where I was unconscious.

I should come out more because I know it’s outside that stimulates the ideas inside, something as simple as a bus or train journey and looking out of the window gives me new ideas, new processes and new loops to explore.

But going outside involves timetables and platforms. Concourses and navigating trains. Squeezing myself into spaces that don’t really exist, and being close to people I don’t know, their conversations imposed on me unless I plug myself into my phone which I always do now so I can control the sounds.

Spotify is possibly the greatest gift anyone has ever given me. It is my defense and my solace. In my earphones are loops, lovely electronic loops and sometimes they change and sometimes they crescendo, but mostly they loop and it’s so comforting, to know where they are going. I don’t like lyrics, they’re unpredictable, unexpected resonation resulting in jerking stutters of emotion.

I know when I am sat on a train reading something on the internet or a paper that my face is doing things while I’m not concentrating super hard on making it not do things. I catch people starting. I don’t know why they’re staring. Is it because someone should not show these things or is it wonder that someone is?

Then there are the puzzles. Su Doku’s which act as defences but also shut people up. The eye rolls and nervous shifting when I sit next to people change as they see me working my way through the puzzles, quickly and methodically, and I hear whispered ‘shes’ quick’ to the man opposite and I am so tired, so very tired of my actions being the subject of others comment.

All I want is to be invisible. I would kill for a cloak of invisibility. A thing I could throw over me that would make me disappear, remove myself from difficult and challenging, negate the constant requirements of this world to make nice, make polite, make friendly. I’m tired of all of those things, worn bare by the constant demands of a world which is designed for other people and not for me

The temptation is to walk away. Leave it all behind. Detach entirely and never come out of my mind where frost patterns across windscreens fascinate, watching raindrops trickle down windowpanes is a valid and accepted form of passing time, where it’s okay to be moved to tears by the beauty of a bed of bluebells.

Instead, because the world doesn’t allow me this retreat, I have to interact. I have to come out. I have to burn through energy just trying. And I never seem to attain the ‘acceptable level of being’. And there is an acceptable level of being. It’s the level of being that means the checkout assistant in Tesco doesn’t check your magazine for concealed items, where security guards don’t watch you or follow you, where conductors are as friendly to you as they are to everyone else, where bosses don’t express their clear disappointment that you are not the person they thought you were, where friends don’t disappear before they become actual friends after convincing you they’re worth letting get close to you, where people are not utterly and completely crap.

This world, this world you’ve built and created, it is hostile and cruel, hard and cold. You accuse me of being hard and cold. Aloof and remote and removed. Yes I am. You made me so. You and your ridiculous rules and codes, your shibboleths I’m ignorant of, your signs and sigils I don’t acknowledge.

And so I ask myself, why should I come out? What enticement is there for me to come out? What reason? What do I get out of engaging with you exactly except heartache and pain, frustration and incomprehension?

If you want autistic people to come out, give them a reason. I don’t think I am the only ASD person who feels like this? Am I? Am I utterly alone? Is there anyone out there?

It’s beautiful in here.

The Bridge that links us

Wednesday, March 5th, 2014

I’m watching The Bridge. It’s the wrong one. It’s the US one, and not the Danish one. But I figured I’d watch the US one and see what a US interpretation of female Aspergers looked like before discovering what the Danes make of us.

It’s interesting. In some ways I am a little confused. Published material in terms of stuff I have access to, in other words not Journals etc, is scarce when it comes to women with Aspergers. So how in hell does a US TV show manage to get it right? Who advised them? Was it a bloke who was guessing how it would come out in a woman? Is that why there are no tears yet or meltdowns? I’m only on episode 4, there’s still time, but this interpretation feels almost robotic and that’s not right.

Obviously a TV show is going to struggle to represent the internal order/chaos that happens inside an autistic brain. Or at least I think it it’s the autisitic bit of my brain which means I’m seven conversations and links ahead of everyone else around me. I’m told I jump and don’t explain the links – I don’t because I assume everyone is smarter than me and more than able to make the links themselves.

Anyway. She’s too tidy. Her house is perfect. Knowing where everything is all the time and everything having its own place to return to is so right. One of the hardest things about living with someone else I do know very well is that this space is his space and not my space and therefore I have had to squeeze my things into the little spaces created for me. I’ve shared flats with people I barely knew before now and the stress of things appearing and disappearing in random places was not good.

Her speech is like mine on lockdown. It’s how I talk to people who are official, or intimidating, or who I don’t want to talk to at all. I eventually relax enough to talk properly and then things tend to become much less ordered but that’s spot on too.

In fact, most of it is. Which is…good and bad. Good cos so far it’s not been mentioned what she is or what she was born with and that is maybe missing an educational opportunity. But the nicest thing to see is other peoples reactions to her. Some people don’t like her because they’ve only been exposed to her momentarily. Others that spend more time with her grow to understand her logic and have patience with it and eventually start to help her by explaining unspoken rules that exist that she’s missed.

I’d recommend watching this but only if you’re sure you are okay with knowing you might have accidentally said totally the wrong thing in the past. If you don’t care or don’t notice then watch it. If you’re a sensitive flower like me, it might be a bit difficult, but it’s worth getting over the sinking feeling and not using it as a stick to beat yourself with. Instead use it as a marker for how someone can be successful at finding something their good at, and for how people who understand can become allies and eventually friends. All in all, this is hard to watch, but I think it’s good to watch.

People aren’t always nice

Thursday, February 20th, 2014

Rigid thinking is an inherent trait of ‘aspieness’. Black and white thinking also. Combine the two together and you’ve got a mix which can be rather horrible. Yet when you write it down like that, it doesn’t seem such a big thing at all.

I’d like to explain why it can be catastrophic, especially when unchallenged.

7 years ago, my boyfriend wandered off into the time and attention of another woman. I was ill at the time – a now explained problem with a dentist finding a nerve to inject in order to extract a tooth went on and on and on for months and the pain and the associated painkillers knocked me out completely. Rumours which I think are as yet untested of autistic people having borked physiology in more ways than neurological make a lot of sense to me. Injections at the dentist are hit and miss at best though finding a dentist who despite not knowing I was aspie employed all the steps the NAS website says he should has meant I actually go now. But every other filling is a lot more painful than it should be.

Anyway. I was ill. And my boyfriend, feeling unwanted wandered off into the arms of someone else. This was the second time this had happened – in a prior relationship I had been hospitalised as an emergency for ignoring a lump at the bottom of my spine because it didn’t hurt much which turned out to be an abcess and required a very lot of antibiotics and daily trips to have the wound redressed at the local doctors for 3 months. While I was in hospital, he was cheating on me with someone I thought was a close friend. Unfortunately, the experience in the current relationship also involved someone I thought was a very close friend, who was dallying at the same time with the ex who’d cheated on me while in hospital. 

One woman messing around with my ex and my current boyfriend aside, and the obvious conclusions to be drawn from this, two things are clear. Every time I got sick, really sick, my boyfriend wandered off, and female friends who I trusted hurt me.

My experiences of female friendships are relevant here I think. I had one friend at middle school. We did everything together. She was horrid shy and unsure of herself and we fit together perfectly. I was a romping tomboy and she was a middle class flower and we both rubbed off on each other for the better. We moved to secondary school and 2 other girls became involved in the friendship and it all went horribly wrong as I struggled to deal with inter-relationships which involved more than 2 people. I was bullied one of the other two, my grades consistently better than hers resulted in exclusion and silences and always being forced to walk alone while the other three walked in front or behind. 

I was young and I believed life would always be like that. School was difficult and unpredictable, my grades dictating my daily experiences. Stress levels were high. I stopped talking or communicating and became silent and detached. I went home to a house where for various reasons things were no easier, an undiagnosed father experiencing extreme paranoia and accusing me of devil worship because I wore black (my school uniform was black) being one of the more easier to explain symptoms. Mother is aspie too, undiagnosed also, but aspie nevertheless. Chaos reigned, unpredictability and temper outbursts and screaming and shouting and what felt like escalating violence as things spiraled. I hid in my bedroom. I had no friends in our village and we had no car or telephone. I was isolated entirely from everything and everyone. I withdrew further. It wasn’t depression. It was detachment. Each day I would wake up and walk myself through each step of the day reassuring myself that there was nothing problematic or dangerous with that particular bit. And so I would work through each day in increasing silence, unless one particular teacher was on the timetable, bracing myself constantly for incoming attack while slowly retreating further and further into the safety of books. 

My parents split up when I was 16, 2 weeks before my exams. The only time a teacher ever came to me to ask me if I was okay was before my first exam, which I hadn’t revised for for obvious reasons, book in hand, sat on a wall outside our ‘temporary’ classroom, enjoying the sunshine and drifting. No adult until that point had ever asked. By that point I was so detached I answered I was fine. He went away. People always do when you tell them what they want to hear. 

I was invisible. And I was off to college. Not revising for exams resulted in one grade higher in every subject. I left the bullies behind. The friend I’d had since middle school, helped us move from the house my father stayed in. We talked. Slowly we built. Slowly I gained a friend. And then another one as her other best friend she lived next door to came to become part of our group. And that’s the only time I remember feeling entirely accepted and entirely comfortable with saying exactly what I was thinking and acting exactly how I wanted to act. 

But we all went to university, and those two years passed and all of the complicated and difficult started again. 

Over time I have had many female friends. It has always been difficult. It has always required massive amounts of effort and concentration. It has never been easy except for those two years while I was at college, a very long time ago. The intricacies of existing friendships, interwoven with new ones, hierarchies, of trust and betrayal brought me to a point where I walked away from all of it. I couldn’t take the complications, the politics, the ‘you said x to y, you bitch’, the bitching behind peoples backs and the personality assassinations which inevitably led to it being someone else’s turn the week after. 

I chose silence again. 

This is where we loop back to the beginning. If a persons experience who has problems with black and white thinking and rigid thinking appear to provide evidence of one thing, to accept that any other thing may be possible becomes harder and harder the older you get and the more experience you see and gain. 

It resulted in my believing two things, absolutely. One, get sick, be cheated on, and two, women are evil bitches who will betray you and screw you over at every chance, who will be nasty, and evil, and bitchy and enjoy it and do it maliciously and with intent to hurt.

Two outcomes inevitably ensued. Every time I got sick I believed my boyfriend would cheat on me. Every time a woman showed an interest in becoming a friend I would run away.

It has taken 4 years to start to trust women again. It has taken 7 years to finally understand my boyfriend wont cheat on me if I get sick.

Why am I sharing this with you?

If you’re a teacher, keep an eye. If you know there is an aspie girl in your class, never approach her in public. Never pick her out and never focus attention on her unless she chooses to offer to have attention focused on her. Always check up on her, weekly if you can, but do it off radar and off record if you can. Ask how things are going and watch carefully, because lying isn’t something we do well or easily. ‘I’m fine’ is not necessarily something to be taken at face value, probe for more but be direct and don’t beat around the bush and imagine for a second she’ll get any hints. 

If you’re a parent, you need to understand something. You can over fuss, and you can under fuss. It’s a fine line and we’re all different. But more than ‘normal’ teens, we’re struggling. Way more. Our bodies unpredictability will quite possibly escalate to rage inducing levels and it’s not hormones, it’s our lack of control. Be gentle with us. We’re not cross at you, we’re cross with our bodies and just because you’re the one who ends up teaching us about them, we wont associate and blame you. But don’t over fuss either. Let us disappear inside our heads sometimes. If you keep yanking us out, we wont reboot or recover from school and school is exhausting. It’s exhausting to the point that homework is a refuge because it is nice and neat and orderly and involves questions. Over stimulation is bad. Under stimulation is bad. Help with friendships will be welcome sometimes and not at others. Our behaviour will be erratic and unpredictable. Sometimes despite being intelligent, our grades will suffer. Sometimes schoolwork will bore us to death it’s so simple and sometimes we’ll disappear into it for hours. You can’t control it. We can’t control it.

Partners. Please understand ‘if this then that’. Do quick checks. Did you do something a few times where something else then ended up happening as a result and then suddenly stopped doing it? Did you actually clearly explain something wasn’t her fault? Did you get defensive and blur things which were then misinterpreted? Does your partner keep coming back to something you think is done and dusted and you can’t understand why she keeps opening old wounds? All of these things can lead to confusion. The latter question, if answered yes, is a clear indication there is some process which is running and hitting an error and she’s trying to work out where the error is and fix it. While it might be tedious for you, for her it is like sleeping on rocks. She can’t rest until she’s found it.

But I think most of all I wanted to tell aspie teenagers that it does get better. It does. There will be people who are horrible to you. There will be people who will be ace at you. Hold on to the latter and ditch the former. Bitchiness doesn’t sit with us well, politics ditto. You don’t have to play. You don’t have to be unhappy. You don’t have to always be getting it wrong and suffer the consequences. There is light and there are people who shine, just like you do but differently, and they will be beautiful and intelligent and smart and funny. But most of all they will be kind. If there is someone in your life who is not kind and you can choose to not be near them, not interact with them, not let them confuse and conflict you, then walk away from them.

You are worth more than all the stars in the sky wrapped together and you deserve friends who can see that and who will happily take the rough with the smooth and never blame you for the bumps. Sometimes that will mean there will be no friends. Sometimes that will mean there are too many friends. But choose that, because you can choose. If your days are endurance tests then there is something wrong and you are allowed to speak up and say so, allowed to change things so they’re not.

You’re not allowed to quit school though – those worthless bits of paper are worth something in the end, I promise.

With thanks to Margaret Attwood and her book Cats Eyes without which I would never have believed there was an after after all.