Wednesday, 1 April 2015

Autism awareness week

This week is Autism Awareness Week. We got a whole week! I'd guess that'd be something to do with the rising incidence of autism in the UK and across the world.

I am a girl who is autistic. This makes me a rare bunny according to current estimates - some of this it seems is to do with the 'missing diagnosis' of girls and women with autism, some of it is probably to do with the gendered diagnostic questions (do you collect things? Examples, insects or toy cars) and some of it is with the focus on the 'male brain' aspect of autism..

It also feels important to differentiate (or not) between classic autism and high functioning autism. For some autism comes with a learning disability element. For some it doesn't. For some it is physically disabling. For some it isn't. For some it affects vision. For some it doesn't. This is why autism has been reclassified as an Autism Spectrum Disorder. Ignore the disorder bit - that's not helpful. I am ridiculously ordered. But spectrum? Yes. I am at the high functioning end. It means my IQ is...a number greater than average. Lets leave it at that.

So what do I wish you knew about autism as an autistic person? What do I hope would make you think twice before saying or thinking something derogatory or harmful? What do I think would make you have more patience, to enable you to be kinder?

1. Social cues

Lets get this straight. Rudeness is intentional. There is intent on the side of the person who is not saying good morning, or who is interrupting you inappropriately when you're already having a conversation to be rude. They are aware they are being rude. They just don't care enough to follow your social rules.

Autistic people are not intentionally rude. It genuinely never crosses our mind to say good morning if there's something more important to say first. Why would we say good morning if there is a broken lift we've just been stuck in, or we're exhausted from the journey from hell? Oh wait, we'll get to that in a moment, the thing about interacting with people when we're in 'overload' already. Sometimes, take it from me, you'd be glad we hadn't started any conversation, you'd end up with a garbled and confusing run down of our journey or experience trying to obtain a coffee.

Interrupting inappropriately is a very similar thing. Generally, we're coming to you to talk to you for a reason. That reason is sometimes on a loop inside our head - either as a way of retaining the information so we can remember what it was we wanted to talk to you about, or because it's got stuck and is looping without us wanting it to. Nevertheless, we need to get it out. Now we can't read you at all - we'll get to body language in a second - so a lot of the time we don't realise we're interrupting inappropriately anyway. As far as we can work out, when there is a gap in the conversation it is okay to talk, because it seems to us that that is the point where you have chosen to stop talking. This might seem silly to you, but you don't realise how you process these cues and understand them instantly. You do this without even thinking about it. We can do it but we have to think about it. That takes processing power. 

So maybe, next time someone doesn't say good morning, notch it up to not being aware, not ignorance or rudeness?

2. Body language

Have you ever noticed that there are some men/women who haven't picked up on your clear signals you're interested in them? Been confused when you've got 'interested' signals back but never been asked out? Possibly that person was autistic. 

Dating is at the advanced level of human interaction - everyone struggles with it a bit. Oddly, it's not something I ever have. 'I like you, shall we go out for dinner' cuts straight through a lot of the...politics of dating, I've found. In fact in this respect, I believe autistic people are way ahead of those who are not. Pop that in the superpower pot. Unfortunately, there are things far more complex than dating for us. Like when to say good morning and when not. When someone does want company to lunch and when someone does not. Get these things wrong once or twice and people put it down to you having a bad day. Repeatedly get it wrong and it can lead to people getting very cross with you. Now that sounds like it might be out of proportion, and of course it is. Except a lot of the time, people don't actually want to be at work for whatever reason (children, hate their job, not getting paid enough, tired, hungover) and after a while, the person who's not reading body language can easily become a target for whispered comments and being avoided in lifts. It winds people up. 

Not as much as it winds me up though, I'd wager. Because time after time I have found friendship groups closing and work teams closing against me. I talk too much or I don't talk enough. I never get it just right. Adding it to the above and it's not a great combination.

So next time someone is doing something which is annoying you, maybe tackle it kindly? Take that person aside and gently explain to them what it is they're doing wrong? Similar to how you'd tackle someone on an issue of personal hygiene perhaps? 

3. Sensory overload

Everyone on the spectrum has different tolerances. Everyone has different triggers. Some of us know our triggers super well and will do anything and everything to avoid them, despite your best efforts to tell us 'we'll enjoy it once we get there' or my personal favourite 'you'll feel better when you've got it over and done with'.


I won't. What you see as at best a weakness of character and at worst wilful avoidance, is for me a case of avoiding a meltdown. Now meltdown brings to mind images of a child on the floor throwing a tantrum, screaming, crying and kicking. And yes, you know what, even as adults that's what a meltdown looks like for some of us. Judging? Smirking? 

Here's what's happening in our brains. A complete detonation of every sense we have. It usually starts, I think, with one sense overloading. It's like a circuit in your house. The kettle doesn't turn itself off. The kettle keeps boiling. Steam gets in the plug. The plug shorts. The fuse trips. That's my brain and the worst thing is? I can feel it happening and yet past a certain point, I can do nothing about it all. See also anxiety which we'll talk about in a moment. But my meltdown doesn't look like your stereotypical version of a meltdown. Perhaps it's because I'm a girl. There is growing murmurs that while a typical man will act out, a typical woman will internalise. I internalise. And as I do I shut down. As my senses become overloaded and short out, my brain slowly shuts down to protect itself. This can manifest as anything from a literal inability to speak, to a looping - either a physical one or a verbal one. The only thing that will make it better is being left alone, and ideally removing all sensory input completely - something I'm sure you will all be aware is becoming increasingly difficult in this world of ours.

So. I am now the expert in avoiding my own triggers. Next time I say 'no I can't do that' please trust in me there is a really good reason that I cannot do that. Perhaps not now, perhaps not with you. But not now.

4. Anxiety

'We all get anxious, what you making a big deal out of now?'

If anxiety were a scale from one to ten, most people would start at zero. Most of life would be a zero, with occasionally difficult things flicking the needle up higher, in direct proportion to the difficultness of the thing currently being encountered.

I start at 3 or 4. I never have no anxiety. I have learned to manage this. It started with accepting the anxiety, a mindful approach. Now it focuses and is intertwined directly with the above. Managing and avoiding my triggers has reduced my anxiety almost down to a constant 3. But the problem is, when you're starting at 3 and not 0, it can look very odd to someone who doesn't realise that when you suddenly become what appears to be massively anxious over something relatively simple like going on a shopping trip to a new place. You would rise maybe 1 or 2 points on the scale, to 1 or 2. I rise 1 or 2 points to 5 or 6, You see the problem? And when combined with the next thing on the list in can be mighty tricky to manage.

5. Early warning systems

I don't have any. In an MRI, if you looked at my Amygdala when a source of stress were introduced which would slowly escalate to become a major problem, my amygdala wouldn't fire. Yours would. That's because you can see a problem coming, your body tells you, then you avoid the problem. I don't get the early warning. So the first time I know I'm anxious is when I am at 5 or 6 on the 1-10 scale. Or at least I would if I only relied on my Amygdala. I do not, of course, now rely on my faulty Amygdala, I instead rely on my stomach. But until someone helped me identify my alternative early warning system, I was lost. And I spent a lot of time extremely anxious. To the point where I was having full on anxiety attacks 2-3 times a day every single day of the week for over a year. Sound tiring? Yep. It was. 

So when someone is freaking next to you and you don't know why, it's not that bad, really it's not, maybe share that? 

6. Superpowers

Tricky one this. I hate the word Savant. Quite a lot of us do, anecdotal observation tells me. It's an ugly word, harsh and angular. That probably doesn't make sense to you. But words have shapes, and sounds and a 'something' attached to them which I can't quite explain. Some words are nice and I use them a lot. Regular readers will know which ones. And some I dislike intensely and try to avoid using on pain of death. Savant. One step away from spitting. This, I suppose ironically, is perhaps one of my superpowers. Words aren't just words.

I also hear words. I read aloud in my head. On Twitter, I hear the tweets being spoken by the people who've tweeted them if I've met them. I am far less likely to misinterpret the tone of a tweet from someone I have met. 

This may be linked to the next superpower which is the ability to write the things I write for CIO and Forbes entirely in my head without writing a note or a draft. I don't do drafts. Things float through my head in the preceding week before writing an article and then I sit down and write it - usually in about an hour. How long did it take me to write the article? An hour. Except of course it didn't. It doesn't matter if the article is 300 words or 3,000. This is the way I work. 

Then theres music and colour. Sensory overloads also come with one level down, which is sensory intensity which is the right side of not good. So sometimes I can go to a gig and it's horrific and we end up leaving after an hour. It'll be a combination of heat, noise, sound levels and balances, lighting, the venue and the people within it. But sometimes, just sometimes, gigs are the best places on earth. A perfect storm of lighting, singing, dancing, people, atmosphere, the right level of happy drunkenness, perfect sound levels and a band who are happy to be there. Those are the moments when I forget I must fit into everyone elses idea of what normal is and I just switch off. I close my eyes and I dance and dance and sometimes I open my eyes and find I have gathered fellow inhibitin losers beside me and we look at each other, grin our faces off and disappear off again. And not a drop drunk or a substance imbibed. It is by turns the most beautiful, but also the most intense place to be and they are the moments which fuel me.

Unfortunately...well lets talk about that next...but if you ever see a girl with her eyes closed dancing badly under the lasers with the silliest grin on her face you've ever seen, it's me. Unless my eyes are open, don't interact. Don't touch. Just let me be.

I also have almost perfect visual recall. I have to concentrate, I have to mentally take snapshots. But I'm the girl who knows where everything is in her suitcase two weeks after she's packed it. Lost something? I'll tell you where it is, even in your house. Changed something since I last visited? I'll notice. I can read a page of a book, close my eyes and reread the page. I can recognise a lot of songs from the 1st bar. But I can't remember any of the script of my favourite shows which is a good party trick to have. I used to be able to remember conversations months later word for word but my memory isn't as good as it once was. 

I can learn anything. Well almost anything. Medical stuff confuses me a little bit but I understand the basics of neurology despite never studying it, see also quantum mechanics, art, Tudor history and a few other things I never even studied at GCSE. 

Just don't use the word superpower in my hearing. I get to call them superpowers, they're my bodies compensation for the utter fails in other areas. You call them superpowers and I'm going to offer to put my knickers on over my jeans. Just. Don't.

7. Concurrency

We come with other stuff more often than not. Some people just get blessed with autism. Others with autism and anxiety and depression. Yup, hands up (all under control now). But there is a whole long list of 'and x' that people with autism seem to be more likely to need to deal with. Dyspraxia and dyslexia are quite well publicised (I'm clumsy but for different reasons). 

Hypermobility unfortunately seems to be quite common, especially in women. And it seems in me. My knees dislocate and 'slip' out of joint. The bones in my feet occasionally get confused what order they're supposed to lie in. My little fingers stick out at funny angles and I've currently got a sprained elbow. I've literally sprained my ankle in socks on our kitchen floor. Fish oil might help your joints. Last I looked it doesn't stop joins dislocating. My joints dislocate probably because the collagen is faulty. Fish oil doesn't help with collagen. Neither do collagen pills. Please don't say something ridiculously stupid in an effort to be helpful. I don't want you to be helpful. I'm not telling you I projectile vomit when I come around after fainting to ask for your help - I'm telling you so you don't get covered in vomit. I've mostly got the not fainting in the first place covered....mostly.

So there you go. 7 things I wish everyone knew about autism so that they didn't say stupid, insulting, judgemental things to me. I reckon I spend the other 51 weeks of the year trying to fit into your crazy world with its invisible rules, faces that all look the same, noise that's often intolerable and in way way too close proximity. I reckon this week I get to tell you ways you can make being in your world, under your rules, a little bit easier for me.

Let me know if it helped.

Sunday, 2 November 2014

What I mean when I say I'm autistic

This post appeared on my Facebook timeline and it's made me think a lot about what Autistic Spectrum Disorder actually means.

I actually don't exist as a diagnosis. I was diagnosed in February this year, all official like by a Clinical Psychologist via a charity which has received permission from yet another official centre for diagnosis in Nottingham to diagnose away from that centre. Which is good because I live a long long way from Nottingham.

I was actually officially diagnosed with Autism Spectrum Disorder but the assessment and diagnostic process I went through was for Aspergers Syndrome. I score 45/50 on an assessment which was based partly on about 100 questions (I think it was that many) that were short and to the point, and then another assessment with the psychologist who also assesses your behaviour, speech patterns, body language etc. A combination then brings you to the final number out of 50.

I scored higher than I thought I would. This made me feel like a fraud. Then I started reading every book and article I could lay my hands on about women and Autism and it all suddenly started to make sense.

Drag queens and transvestites used to call it passing. Looking so much like the woman they're intending to be that no one bats an eyelid as they pass them in the street. It seems to me that one of the biggest themes running through literature relating to woman and autism is 'pretending to be normal'. Of passing. Of not blipping on anyones radar, of learning to hide things which mark them out as different or unusual.

I also realised that this is a skill I don't have. I cannot pretend anything. Either I feel something or I don't, believe something or I don't. Want something or I don't. There is no artifice, no deception. You get what you see and you hear what I think.

But I must have been hiding something because my behaviour has changed slightly since I was diagnosed. I stopped apologising, first and foremost, for things which were not my fault, not my monkey and not my worry. I stopped disclaimering everything, trying to preempt issues before they arose, trying to smooth the way for everyone else but myself. I stopped thinking 'I mustn't do that, people will stare' and starting thinking 'That helps me exist in this world without harming my mind, I'm going to do that now'.

A diagnosis is for no one else. It's for you.

In a lot of ways, writing this is for me, not for you.

I am learning to be, by my own slightly warped definition, selfish. I'm discovering who I actually am, not who everyone else thinks I am. Whatever you think I am that's what I'm not has never felt truer. I am capable of enormous love, care and kindness. I have wonderful friendships which yes, require a little more conscious processing and conscious stepping than for most, but it's amazing what 'no really, you actually seriously have to be blunt with me and tell me the truth' conversations can do. I go to counselling fortnightly and walk out of every session a little taller, a little more grounded, a little more assured of myself, my identity, and where autism has shaped me but also fits around me.

The storm of before is quietening and in its wake is a blissful space in my mind. It's not until the noise stops that you can understand why there was no more room for any more data in there. I had reached capacity. In computer terminology my hard drive blew. I never ran defrag. I never reordered. I never deleted the documents I no longer needed to keep right at the forefront of my mind.

A diagnosis is your key to yourself, but also the key for others.

I never realised I had super powers. Not like Iron Man. But I never realised that in the process of, for example, my amygdala completely not functioning the way it should, other bits of my brain fired double time. I never realised other people couldn't just read a page of text, process it and then summarise it in 2 minutes. I didn't realise other people didn't stop in awe at how the rain was slanting through a streetlamp at a tram stop in a city full of dark and grey. I didn't know that sensory issues can also be wonderful things, that the same thing which means I have to cut out labels sometimes still as an adult means that I drown in cotton wool dreams when soaking in the lighting and sound and heat of a gig.

Everything balances. He/She gives, and he/she takes away.

Spectrum means just that. It means a collection of symptoms. You wouldn't notice if you weren't intensely social animals, herd like in your tastes and clothing. I stick out unless I try not to and the sheer amount of processing required from me to not stick out is something I cannot do any more. I can't. My body has clearly and loudly drawn a line and told me that if I push much further I will have burned through everything and there will be no replacing that. So I have to choose. Select which things I will allocate processing to and which I wont. Combined with an autistic hyper focus which often means I forget to eat or drink this requires some careful managing. I'm still not there yet. I'm not sure I'll ever be there. Looking after myself is difficult. There I said it. Remembering to eat and drink, to eat and drink the right things at the right time, to wear the right things to the right places for the right weather, to say the right things to the right people in the right order but only when they look like they want to talk but not when they don't but I have no way of knowing when that might be because I need to know someone super well to be able to read their body language and I do mean super super well and the chances of getting to know someone I work with fast enough to be able to read before I say or do the wrong thing is just impossible and there's always so many people in teams and I've to learn all of them and of course I'm trying to tackle this problem intellectually and analytically but people don't work like that, they're not zeroes and ones and...

That's what you pay for your super powers. Alone. Lonliness. A constant feeling of other. Knowing you're always going to be 1/2 a second behind no matter how fast your brain is computing all the possibilities. Knowing that it's inappropriate to tell someone you've only just met a list of things they are and aren't just from seeing a few tweets and briefly meeting them - yes way before Sherlock and yes I wince a lot but also I love it because someone else is seeing what I see how I see and no I don't have a mind palace, don't be ridiculous but  I totally bet a whole load of autistic people do...I'm not appropriate. I am not polite. I am not intentionally rude but apparently I am accidentally quite a lot of the time. I am blessed with just enough self awareness to know when I've misstepped yet again, just enough social awareness to know I'm being ignored and frozen out with just enough unawareness to be oblivious to the why.

I spend a lot of time looking at people and wondering why they're being so cruel, so vicious, so bitchy.

But I also spend a lot of time now thinking that not all people are like that. Not all people are like that all of the time. I have interpreters, friends who patiently and gently explain that no, that's not what was happening in that situation at all, this was, and actually I misread it and this is how I can not misread it again.

Counsellors can't solve everything. They're an incredibly important piece of the puzzle, but they can't tell you the things that friends can tell you.

So actually, this is a post about friendship, really. It's about finding myself and who I am. It's about the quiet coming where before there were storms.

It's about getting better. And that's what I mean when I say I'm autistic. I mean, I am autistic. But I also mean, I am me. I am getting better.

Thursday, 30 October 2014

Who deserves our care?

Some of this is my story. Some of this is others stories as told to me. You don't need to know which is which.

The Coffey report was published yesterday, an investigation into child sexual exploitation on the back of the Rochdale investigations. It says that child sexual exploitation is the new social norm in areas of Greater Manchester.

I wasn't surprised.

Somewhere in the last year we were returning from yet another appointment at yet another hospital in Burnley. I was feeling a little unwell but one thing stuck in my mind. The time was somewhere between 3 & 4pm in the afternoon, during the week, possibly a Wednesday. Young girls were walking down the streets on their way home from school. And as I watched, a car pulled over and a middle aged man shouted something I couldn't hear at two girls. They stopped, checked I assume to see if they knew the man, then sped up and disappeared off down the road as the man in the car drove off laughing.

I knew what that was. There's a reason for that.

Somerset, as it was when I was growing up, was very different then to how it is now. Older farmers, who'd never married were often encountered walking into towns and villages in the early evening, heading to the pub after the milking had been done. It was one such chap who accosted me while I was cycling down the main road out of Ilminster to Chard. I was going to water the flower box which was under the 'Welcome to Ilminster' sign as my mum had volunteered to do this each evening, but hadn't been able to do it that evening for some reason. An older farmer said something to me as I passed so I stopped. I can't remember what else he said, all I remember his him trying to kiss me, and freaking out completely, leaping back on my mums 3 speed sit up and back and hammering away from along the main road as fast as my spindly legs could carry me.

It wasn't the first time, and nor would it be the last that an adult made me feel completely at a loss, completely vulnerable and completely sick to my stomach. I am not alone in experiences like this either. I've told this story to 5 other women. Two of them had similar stories of becoming separated from parents and being backed into corners.

I stopped because my mother taught me it was polite to, to not be rude, to respect my elders. She taught me never to get into strangers cars, but she never said what to do when someone who I was supposed to respect did something completely inappropriate.

I never told me mother. She doesn't read this blog. I suppose I should...but why didn't I at the time?

I thought it was my fault. I thought I'd misread the situation somehow, that somehow I'd given some kind of signal that said that that was okay. I assumed I was at fault, because he was the adult.

So to say that I understand why young girls get into the tangles they do is an understatement. And for far more unpleasant and horrid reasons than this. I understand the confusion. The self blame. I can understand how taking risks becomes attractive because at least you're in control and you know the rules. I can understand how that moves into self harm, to the 'I deserve this, I'm worth nothing' mentality. Repeated exposure to adults who are not following rules is horrendous no matter how your brain works. That this often happens when the victim themselves are in the throes of hormone disruption, their first period, arguments with their parents, isolation from support networks only creates a perfect storm.

Add to this the internet. Add to this the formation of gangs who can communicate across County and Borough boundaries and I suppose it's no wonder the perpetrators feel that they're invincible.

Imagine how those girls feel when they finally sum up the courage to tell another 'responsible adult' what's happening them and they're at best ignored. Imagine how confusing it would be for a young woman who's never been told that the police are supposed to be there to protect everyone, that they're supposed to be there to deal with these crimes as well as the more well known and accepted ones like burglary and car theft. She tells someone, the police get involved and she's scared because as soon as the police are involved, she feels even more like she's done something wrong, because maybe her only dealings with the police ever have been when she's done something wrong.

Imagine how being disbelieved feels. But even more, imagine how what you wear, the same as every other girl you know is the reason for that disbelief. Imagine if your father is abusing you, you are completely confused about why that is happening or what to do about it, the CPS go to your father to gather evidence, he calls you a slag and the CPS believe him. No, I don't know if the father quoted as saying that in the Coffey report was abusing his daughter. But I wouldn't be surprised. No, not surprised at all.

You see...and how can I say this gently...sexual abuse is far more prevalent thing than you want to acknowledge. It's not just grooming gangs. It's not just complete strangers. Stranger abuse is the thing we are talking about right now and that is fantastic, but we need to not forget that abuse happens in all classes, in some families and in all areas of the country. Don't become complacent that your town is safe. Don't believe that your town is too nice for that sort of thing to ever happen there. Instead, please, talk to your daughter. Talk to her and ask her if she knows what to do if someone touches her inappropriately. Check she understands the definition of inappropriate. Reassure her, really reassure her that if she ever has any problems like this she will be believed and it will be tackled and something will be done. Hear her. Back her.

Sadly though, I'm going to guess that if you're reading this, you already have. So spare a thought for the girls who for whatever reason, don't have a you. No one to warn them, no one to guide them, no one to believe them. If you can, if you have the time, find a local charity to you, a charity that looks after children, that warns children, that teaches children about the difference between inappropriate and appropriate. Donate some money, or even better some time.

An awful lot of young woman with no one say thank you. Thank you.

Thursday, 16 October 2014

Why I love videos games

Why I love video games by Louise. Ages 30 {mumble} and a half. Yep. Exactly. 

Gamergate sucks. Literally as well as the other. So here's why I have loved video games, currently love video games and will no doubt love video games until I'm 50 something. I doubt I'll ever know better. 

I have walked. Through the Los Angeles of the 1940's, across the dessert of the Wild Wild West. I have run, nay sprinted for my life as dragons so big their tail ends have dwarfed me have desperately tried to wear the robes from my back. I have shot holes in floors and ceilings and floors and ceilings and believed that the cake is a lie. I've captured untold flags, both blue and red in hue. I've driven Cadillacs and the sweetest singlespeeds. I've flown aeroplanes and spaceships, ridden Sabretooth Tigers. I've drilled and quested and drilled some more so that the other teeny tiny avatars gathered around me do not die today. 

I have dreamed. Of beautiful vistas and wastelands. I've dreamed of tactics and keypresses. I've bunny hopped and cheered as 'Headshot!' has blasted through my crappy little Creative speakers. 

I've commanded armies and revived friends. I've made friends and lost them. I've met them and drunk with them. Some of my friends have met their boyfriends in these other lands. Some have honed epic leadership and organisation skills. Some learned to walk tall, some to walk small. 

We have all learned. 

This is what games mean to me. Those little packets of plastic that contain a disc? That little black box beneath the amp and the Sky box? Portal. Window. To laughter, freedom and friendship. To being good at something when today sucked. To belonging somewhere when life looked unfriendly. To colour when it looked grey. 

Video games are beautiful. The sheer scope and scale of something like Assasins Creed. You may only see the blood and the killing. I'm clapping with glee as Venezia is rendered before my very eyes, a playground to explore, every architectural detail sucked in with eyes wide in wonder. 

I am not a normal gamer. I don't chase completion (though LA Noire is stuck on 99% cos bug. Oh wait no sorry, cos feature), I don't chase achievements. I chase experiences. The gleam of chrome on a beautiful car. The reflections in the pool of water my character just stomped through. 
The click clack mechanics of a new gun. All of this is beauty, and all of it rendered, just for me. 

This is what gamergate can try to take away from me, but it never will. Video games are my wonderland. I play them, I am female. Hear me spell cast/assassinate/backflip/coin collect/case solve. Over and out. 

Note. Tapped on my pad. Mistakes inevitable. Sorry. 

Wednesday, 15 October 2014

Putting your big girl pants on

It's a funny phrase that. One of the few funny phrases which make complete sense to me however, as the act of putting on different pants for different situations can be an actuality.

I don't deal very well with idioms. I didn't know until I was diagnosed with Autistic Spectrum Disorder (Aspergers) that there was a reason for this. I didn't know that when a friend said it was raining stair rods up in Cumbria, no one else got a literal visual interpretation of this which resulted in sheep impaled bloodily by stair poles.

Yes, really. Being Aspergers (it's not something I have. It's something I am.), somewhat ironically results in some of the funniest moments, images and conversations. My partner has become all too used to answering ridiculous questions such as 'why do people say things they don't actually mean?' and 'why on earth do people say such ridiculous things and never even crack a smile while they're doing it?'

In fact, the reality is, my partner is my responsible adult. We joke about it a lot and it started as a joke way before the diagnosis. But he is. Telling people he has resulted in some wonderful conversations so far, most notably with the nurse doing the pre-consultant weighing and blood pressure checks. We covered her partners Cerebral Palsy and my Aspergers with ease and comfort only given when two people are not trying to avoid saying the wrong thing but instead are genuinely interested in how something affects someone and the workarounds which result.  

And that's the greatest gift a diagnosis gives you. Freedom. It's not an excuse, it's a reason is something I have typed in the last 8 months more time than I can count. I ask for no ones sympathy and no ones extra effort. I simply ask for understanding. Are you asking me to do something which is so easy you wouldn't spare a thought about it but that for me requires 3 hours of psyching myself up to do? Or vice versa - are you asking me to do something I can do in my sleep (oh look another idiom which is highly amusing when taken literally) which you expect me to take days to do? Are you assuming that the thing which was so easy it took minutes means everything I do is so easy it take minutes?

That's what it's not an excuse, it's a reason means to me. It's what diagnosis means to me. It means I can cut myself some slack but you don't need to. It means no longer crucifying myself every single day because I can write a nationally published article which over 10,000 people will read with no editing at all, but I can't cook. Social situations baffle me and sometimes terrify me if they combine expectations and a role I am supposed to be performing but I don't know what that role is because no one else needs it to be explained in minute detail. It means I can turn to you and say no. No because this will be too stressful for me and this is why. No because you haven't explained in enough detail what you require from me and until you explain more I cannot deliver the thing you need me to deliver. No I wont be the first person someone interacts with face to face for your brand but online? Oh absolutely. No problem. And here's why.

Is that making excuses? Is that asking too much from you? Is that not an interaction you have the time for? 

Well bully for you.

Every single day, I put my big girl pants on. Every single day, I do something which scares me a lot. People say that to people as a motivational tool and I'm sorry but I am not the right person to say that to. Every single day, there will be something that I have to do in order to keep a job or keep a relationship or friendship which I do not want to do because it scares me, but I do it anyway. It's exhausting. No, that's not an exaggeration. It's so damn tiring - the psyching yourself up, the self talking that everyone tells you will help but doesn't, the visualisation techniques everyone tells you to use but which are flipping useless when you have no imagination, the constant warding of the anxiety gnawing in your stomach which means you can't east until the thing is over...

Every day.

So we come back to putting your big girl pants on. We come back to cutting people slack. We're back to walking in someone elses shoes. Can you imagine that? Can you actually imagine fear of that level every single day? How does that taste after a week of it? A month? A year? Can you taste the acid in your mouth from all the anxiousness? Or does it taste metallic, that fear? Can you focus and concentrate and do your best work when you can taste that taste in your mouth? Would other people telling you to imagine the audience with no clothes on work if you had no imagination? After a while, would you start to wonder why that didn't work, why you couldn't self talk yourself through, why visualisation didn't work? Would you start to feel like a failure, despite confronting your fears every single day?

What I am is not a failure. I am a warrior. Every day I face my fears and I do something brave. I am scared and I do it anyway. I may not do it well. I may not do it perfectly but I do it. Every single day of the week. Sometimes my anxiety levels are out of control - those are the days when I have to do more than one thing that terrifies me. Some days my anxiety levels bubble along quietly, barely registering on my consciousness. Those are the days when everything is easy, everything is a known quantity and there is nothing unexpected. They are rare. 

So here's a thing. If you know someone with Aspergers, or you suspect you do, and you're getting frustrated, annoyed or irritated, think about this. Think about the battle which is going on in their brain. Think about how tempting they may currently be finding it to leave the situation which is no doubt causing them twice the frustration, annoyance or irritation it's causing you. Think about the strength of character it's taking them to stay. 

Life isn't easy for anyone. I get that. You've got children and emotional baggage and affairs and all kinds of shit going on. I get that. But those things, they fluctuate. They change. Our Aspergers doesn't. It is a state of continual stress and anxiety that you only experience during times of divorce, moving house or planning a wedding. Those things are easy for me. But the other days. They are not. And we all know which way life is weighted.

Tuesday, 14 October 2014

Talking about my generation

Today is Ada Lovelace Day. If you've been around a while, you'll remember I used to make a point of always posting something to this blog on that day. I will leave it to the reader to surmise why that tradition stopped and why it is now restarting.

So. Gamergate. Ada was a woman in tech.She was a mathmetician, yes, but she worked on the very earliest example of mechanised computer, and for me that counts as a woman working in tech. In the 1800's. She was also a programmer - her Notes containing an algorithm for the first mechanised computer programme.

So. Female. Technical. Programmer.

Not a gamer though. We have to wind forward 150 years for that particular tech to finally start to come into its own. Though I'm not sure Gamergate is an  example of an entertainment form coming into its own. No. Instead I like to think of it as the point where an entertainment form realised it has a problem - and then spectacularly assured the solutions to that problem would never appear. For any one woman to consider following a career path into games making, I think, after the last few weeks would be equally brave and foolish.

Because who, exactly, would voluntarily enter a profession where it is likely at some point that this will happen to you (click for the US site - UK readers obviously aren't interested in such feminist content judging by the headlines you get if you do click through). Yes, that is an adult games developer in the US leaving her home because someone posted her address on Twitter and threatened to do horrific things to her and her husband. It's a beautiful attack in the way it manages to be sexist, racist and utterly terrifying all at the same time.

She's not the first either. Nope, this isn't a one off to be swept under the carpet. At the moment it feels like every week someone somewhere finds another female game developer who has the audacity to have a mouth and use it for something other than night time activities, provokes them, abuses them, and finally death threatens them.

So who are these someones and where have they suddenly come from?

Well. Uncomfortable truth time. They're probably your son. Or your friends son. Or your brothers or sisters son. You see the chances are quite high that if you weren't looking and you weren't paying attention, and you were focused entirely on the implications of digital at work, that you forgot something pretty scary.

Have a think about the world your son currently lives in. It contains porn on tap, 24 hours a day, 7 days a week. Yes, yes, opt ins. Do you think a 16 year old boy is going to see that as an embarrassment? Nope. He's going to see it as a badge of honour. Blocks on phones can be got around - if your son has a Android phone he can just flatten the phone completely, install a ROM (a developers alternative Operating System) and merrily override any blocks or filters imposed by anyone. I haven't tried but I suspect there are similar for iPhones and Blackberries. What's the harm in that I hear you cry? Well actually plenty. Porn per se isn't the problem, necessarily, but go have a read of the kind of porn your son (or daughter; stop looking so horrified, it happens) is now watching. It's a wee bit different to the Playboy images you used to sneak out from your fathers stash isn't it? I find the section titled Slap Happy particularly interesting. Imagine someone thinking 'wouldn't it be fun/funny if' and the person on the receiving end was your daughter. Sickening thought, isn't it?

Then there's Snapchat. Send pictures of your intimate parts at will, endlessly, to anyone who's stupid enough to open an unidentified image from someone they know from school and keep lol'ing. I mean what's to stop them? In the past this behaviour would have been identified as flashing and would have resulted in a prosecution eventually had the behaviour persisted past police warnings and detentions. Now anyone can be a flasher. Anyone at all. And the police? At best oblivious, at worst walking away from a problem they have no idea how to monitor, no resources to keep up with and no one inside that culture to make judgement calls on when banter becomes abuse.

Chat Roulette, Tinder...I could go on. All of these computer delivery systems deliver something quickly and easily to anyone who is looking. A quick pic of some tits, an interaction with the person who owns the tits over text, through to a meeting to actually touch those tits in person - our young people these days are immersed in a world where you'd be forgiven for thinking sex is the only subject anyone thinks or talks about.

Except of course, it's always been the case that teenage boys have only one thing on their mind. Biologically, it's kind of inevitable. But in the past access to all of these things has not been possible. Young teenage men have had rules and edges to their fantasies, to their imaginations. Now we have made a world where anything they can possibly imagine can be made a reality on their phone - and who can blame them if they blur fantasy and reality, paid porn star with your daughter?

Their lives are invisible to you unless you ask. Unless you have difficult conversations with them about boundaries, about the difference between fantasy and reality.

So how does this relate to Gamergate?

I don't know for sure, but I reckon closely. I think Gamergate is about a lack of respect. I think it's about people who've either grown up or who are growing up in this world of instant gratification. I think it's about boys on 4chan who will type anything to get a reaction - and IRC logs relating to the recent harassment of yet another gamergate female developer strongly show this. It doesn't matter how far you're prepared to go - there will always be someone else who is prepared to go one further for the laughs and 'respect' that this gets from other teenage boys.

Yet I assume it actually is teenage boys. Perhaps it isn't. Perhaps instead it's grown men who we think should know better without ever quantifying what it was or when it was that we actually took the time to educate them so they did know better. Did we teach them at school that women should be treated equally, with respect and dignity and that if you wouldn't say it to your mother in public, you shouldn't be saying it to any other woman in public either? Did you teach your son or daughter about equality? Did you tell your daughter that she could be anything she wanted to be only to watch in horror as she decided to be a games developer? Is it okay that becoming a games developer will now be forever something which turns parents blood cold with horror instead of warm with pride?

No. It isn't. No it isn't. And no it is not.

So we've got a pretty little mess we've made for ourselves, and Gamergate is only the tip of this particularly messy iceberg. But sadly, every scandal, every firestorm has one thing in common.

Women. And the harassment and abuse thereof. So ask yourself this on Ada Lovelace day. What do video games, films, or web pages/apps/platforms look like with no women producing them? Because if you don't do something pretty sharpish, even if that is sitting your son or daughter down and having that chat, that is what you in a very small way will be responsible for.

As for Ada? Spinning in her grave.

Monday, 22 September 2014

One small click for man...

I've been thinking about activism, clicktavism, campaigning and polls. As usual, a series of fragmented occurences all collided together in the space of 5 days and my brain wouldn't stop making leaps. That my brain is finally in a state to make leaps is a cause for celebration in itself...

13 months ago, I could do all three Metro Su Doku's in the time it took me to get from home to work on the tube including changes, approximately 35-45 minutes. 12 months ago I couldn't do the simplest Su Doku. 13 months ago, I could do the giant Su Doku published every Saturday in The Times in well under the time posted. 12 months ago, I couldn't do one fifth of it in the time posted. I said that when I could do it within the time once again, I would know I was well enough to go back to work. What I didn't know a year ago but know now is that whilst mental quickness and fluidity is a good indicator of the minds wellness, other factors would come into play. Like my knee dislocating backwards and sideways, and ankles so weak I literally sprained my ankle in socks on the kitchen floor.

So with this as the background, and apologies if some of the words come out in the wrong order...

On Thursday 85% of Scotlands population, much much less of a population than the one contained within England and therefore a number far more impressive in some ways, voted on a referendum.  This required them to do something offline and in meatspace. As commentators flustered and flurried to try and get a handle on sentiment being expressed in the online world, the true headline making was happening in a truly old fashioned way - through marking a cross in a box.

On Friday, St Georges Square in Glasgow became a little of a flashpoint as those who were already looking for aggro seized on issue of the day and held it aloft as a reason to continue to be idiots.

On Saturday, the majority of Glasgow united, beneath Saltires and Pride flags to donate money to those less well off, and to express their distaste for the events of the previous evening.

Both of those things also happened offline. No donations to Just Giving pages for the Glaswegians and no online trolling for them.

Yesterday I spent 30 minutes answering questions on politics within a online survey presented to me through the Toluna service. For the first time in my entire life, I was asked questions on what I thought, about leaders, about parties and about politics. I gave the time gladly (it was quite a Liberal Democrat swayed survey and it asked a lot of questions about my opinion on their policies and how they might sway my vote or not) not because I am a Liberal Democrat supporter, but because they bothered to ask. No one, not a single person from any political party, has ever asked me how I intend to vote. I'd not tell them if they asked me face to face. But I will happily answer the questions when it's part of an anonymised online survey.

Today, I clicked Like on the Labour Party Facebook page.

I have grown up online. But I have also grown up offline. Inevitably this is so and I am no longer unuusal, not in the way I was 20 years ago. My politics have grown from complete disinterest to complete frustration and disbelief through to...

Now. Where I click Like on the Labour Party Facebook page. It was just a click. Well, a tap actually, I don't use mice any more. Outdated terminiology for an outdated tech? Etymology aside though, clicktavism is dismissed. It doesn't mean anything to click a button. It doesn't require any thought.

Except I've never clicked that Like button before. I chose to do it today. I knew about the existence of the Labour Party before today. I knew about the existence of Facebook today. But I only chose to action something today.

And honestly, it was the events of the previous 4 days which led to me tapping that button. A perfect storm, an alignment of planets...or just reality, which was a well considered, long considered, deeply thought through assessment of where this country is, where it isn't and where I want it to be. I don't want to change the world any more. I don't have the energy, or the brain, or the heart, or the fire right now and it's quite possible I never will. But instead of disengaging me, that's changed me, and I think for the better. I used to think that to change the world you needed to be alone. Now I think, and I'm afraid the Scottish people have taught me this over the past few days, I think we're better together. Not in terms of acountry, not in terms of an economy - my thoughts on thaat arenot for public broadcast I don't think.

But in terms of campagins, change, voice, noise, debate, discussion, learning, policy?

I don't want to be alone any more. I want to go and spend some time with people who I think might think and feel the same way I do. I don't know for sure. I'm not joining anything, I'm not paying anything, I'm not signing anything.

I'm just clicking Like on a Facebook page. But to me that one little action is as seizmic in its representation of a change of my attitude as the crosses in boxes which were ade last Thursday.

You see...we live in world where the smallest of actins make the loudest of noises. Click, click.

Wednesday, 10 September 2014

The world of grey

Writing about depression while I'm inside it is impossible. But I want to stand up. I want to be counted. So now that I feel sadness fleetingly, in measures of hours and not months, let me tell you about depression, from my view.

I don't have a black dog. I understand this pictorial terminology is helpful for other people. That's cool. But it's not my friend, this thing. I am told anxiety will become my friend because I can never fight it and to do so will only make it stronger. But fighting depression?

It's it bloody, this battle. And for me, lucky as I am in this autistic/Aspergers view of the world, I wear binary armour. I live. I breathe. I wake up every day. Not morning, mark that, but every day. Those things, these things, they are unarguable, infinite. This absolute is my armour and I hold it dear to me. This rigid thinking that I am told so often is a bad thing, in this case is good. The best. The thing that means that even when I am counting breathes, I am still counting.

But there is no dog. But there is a tunnel. It's dark in there, obviously. But it is other. Separate. Because the further most thing, to me, is the grey. Sometimes, still, in a world that is now colour, I am still shocked to a standstill by how colourful everything is. HD TV, the yellows and greens of lichen on stone walls, the bended broken bows of lightning struck dead tree trunks in their stripes of grey, greyer, greyest - even the greys are beautiful to behold.

Depression is not 'negative thoughts' for me. It is an absence of thought. To someone who, thinks at velocity, a constant stream of beautiful lovely data, images, world when I am well is vivid, enhanced, soundtracked and in landscape. I love it. Depression takes it all away. And yes I know that there is an absence of people in this depiction and this is deliberate. Because 2 people kept me breathing too but this is not about that or them.

This is about the grey. It's about the persistent knowledge you are looking but not seeing. Listening but not hearing. It is to be deprived of the joy derived from input. Nothing fits. Nothing works. Sensation is irritating. Hugs are debilitating. Expectation is crippling. And I keep counting breathes.

They tell you, when you come into contact with mental health services that there is a number. It's a crisis number.  I know the team it goes to. I know what calling it means. I was told to only call it in an emergency but there was no explanation of what an emergency is for someone for whom suicide is {void}. Is it when I am counting breathing? Is it when my tummy hurts so bad I can't eat and I want to crawl out of my own skin and I don't know how to calm down and people don't calm me the same as neurotypical people find them calming and I'm screaming help inside my head but I'm mute?

In retrospect, yes. Yes that was when.

And there is the truth. This is what metal health care looks like on the ground. It isn't care. It's assessment and then you are put in the queue. If it were left to the NHS, I would still be in the queue for counselling which to date has lasted 13 months.

But it's okay. Isn't it. Because I am still breathing. Isn't it?

Wednesday, 13 August 2014

Nine Worlds Geek Fest 2014 - a review

I'm abandoning linear. My brain doesn't work like that. I experience the world through sensory 'anchors' and so these are some of mine. Intensity of something means it's included here, be it a thought provoked, or a connection made. The realisation that this is a beautiful thing and not a useless thing is thanks to someone awesome. We'll get there.

Whose fandom is this anyway?

6:45pm Saturday - Received fan wisdom is wrong

We walked in late (the venue was so awesome we managed to walk in late a couple of times and it wasn't an issue). Almost the first comment I heard was someone trotting out the 'all the girls chatting around the watercooler pretending they knew who the old doctors actually were, trying to bluff it out' trope and I nearly walked back out. I didn't because there were three women and Paul Cornell on the panel and I actually wanted to hear what they had to say, being as how they appeared to know what they were talking about. There was still a sense of 'you think that's love, you don't know what love is' aimed at new Who fans but I stayed because I wanted to know how bad it would be. It was bad.

2 days later I was trying to pick the music I would walk down the aisle to with my bridesmaid at my wedding. This is Gallifrey is one of the contenders. In the process of finding it I listened to almost all the new Who soundtracks. Every song jolted me back to the episode, every song made me feel how I felt when I watched the screenplay it accompanied. You can tell me I'm not a fan. You can tell me I don't love this show like you do. You can tell me so until you're blue in the face. But you don't know how beautiful The Girl in the Fireplace was. You don't know who Amy Pond was to me. You don't know how River Song makes me feel, what the scale, the sheer jaw dropping scale of the library did to my brain, how scared Blink made me feel. 

The panel missed one. Perceived fan wisdom on new vs old Who is wrong. Especially but not limited to when it comes to the fans thereof. I just didn't feel brave enough to tell you so.

We're using knitting needles and crochet hooks to quietly weave thoughts into peoples heads

3:15pm Saturday - Political Needlepoints: how the craft resurgence has influenced social politics

Knitting looks innocuous. It can be. It's okay for it to be. But you can choose to make it something else. The simple act of knitting in public is an expression of something - we take it outside the home and suddenly, is it in a space where it shouldn't be? What does that mean? The entire sessions was accompanied by the gentle dinging of someones bell stitch markers. 10 minutes in the most beautiful...creature walked in and nearly stopped the panel so beautiful was her cosplay. I asked a question badly about the invisibility of women and their craft in the general social media space and discussion. We are invisible because we do it in the home and then sell/publicise/speak about our work on the internet. 

That makes us invisible. That also makes us stealthy. With stealth comes freedom. Discussed in the panel was this (click the link):
Which I only found because the lady who made it followed me on Twitter after the panel. Twitter. It's easy to focus on the negative in this space. But it still brings amazing feminist rawwrrr women to my yard. I'm still grateful for that.

Community is only as good as those within it

Nine Worlds is the most inclusive space I've ever been in. I am not surprised there was a marriage proposal at the Bifrost evening entertainment from a girl to her girlfriend. If anything I'm surprised there weren't more. I keep trying to work out how you bring so many kind, gentle, patient, fun loving people into one space and so few problems happen. No raised voices. Lots of noise, oh my gosh lots of noise, squeals and sometimes shrieks so high pitched I became convinced I was a cat, unpredictable ways through spaces meaning trying to wind through those people is tricky, so many amazing costumes, so much hard work. Knitted Wonder Woman whom it took 45 minutes to get from one side of the con to the other but who didn't mind in the slightest. More than a few authors bouncing around talking to everybody and anybody, posing with said cosplayers and posting them proudly on Twitter.

I stood before the film quiz a few floors up from the Atrium looking through the glass so I couldn't hear any sound. I watched as people glided through the space, bounded through it, hesitantly entered it, carefully stuck to the edges of it. Aren't spaces amazing for that? Our community is just like that. No one is ever pulled into it unless they want to be. No one is forced to participate. But when it becomes obvious that someone in a wheelchair is struggling with something, the mountain moves. And it's for love, a shared love, and being unashamed and open about that love. The things that bring us together, that entwine us, and weave is together is such a firework explosion of fantastic diversity and colour is love. A show. Words. A book. Music. Thinking. Doing right. Doing wrong. Aiming to misbehave. Believing in something, someone, anything.

We are free because we love and everyone is welcome.

The town I walk through is very different to the town my partner walks through

I had tea with Emma Newman. The tea wasn't as good as their coffee in the Bijou Bar. The Columbian Andino was a happy dance of bitter sweet gorgeous. The tea was thick. So confusing. I could write up the hour she spent and gave freely, I could tell you the doors she opened so I could walk through them. I could tell you about the slightly bizarre sensation of someone talking to you and you being able to hear them so clearly with a world of background noise when you usually struggle so bad with that. I could tell you about being aware my face was possibly being too expressive but also knowing it would be okay and I didn't have spare processing to sort that out. I could tell you that enthusiasm is beautiful reflected. Or that wisdom given is the wisdom given equally by a beautifully dressed well spoken regency lady and a farmer in pedal pushers and t-shirt and running shoes bouncing up and down her track with her Jack Russell nipping at her heels. I could tell you that I am so scared of words sometimes but that I think that's okay, about never self editing and people not having faces.

But really, actually, truly? The town I walk through is very different to the town my partner experiences. That's magical. Not fearful or weird or random or odd or negative or anything. If I can help people to walk beside me as I walk through a space, as I recall with perfect clarity the sensory experience of walking through that space, then that's magic. So Emma Newman is a magician. Which feels right. 

Then Emma turned to me as a ball of energy and nuclear frisson bounced over to us and said 'Louise, meet Tom Pollock' and I lost every word. All my words just abandoned, a tornado of a name jumbling everything, and I ran away. He was epic sweet about the entire thing and I need to write a post about Pen who taught me I am only beautiful when I am entirely myself but that's other.

Free is a lie

Yes it is. But Aral Balkan stopped in the wrong place. His presentation is fantastic. It joins the dots and spots the patterns and the way he delivers it is a joy. But he stopped.

It is wrong that only prisoners in this country (and possibly serving forces) must submit to knowingly having their mail opened and yet email, something equally as private on occasion is not treated with the same reverence nor accord.

However. Ingress, a game which is owned by Google is data gathering and yes it's spyware. The geeks playing it, in the majority understand this. But they understand this and they're making the trade because the trade is this. Ingress tracks your pedestrian movements. When I ask Google Maps to tell me how far it will take me to talk from a to b within London, this is not flippant. It is not a throwaway query. It is a query upon which sometimes my ability to function can hinge. I need to know the real deal. The actual number, of minutes, it will take me to get from where I am standing right now, to the crucial place I need to be in 5/10/15 minutes time. 

I need reality. If Ingress means I get reality, so be it. Because who the hell else is gonna care some occasionally disabled woman needs a real time real assessment of time taken to walk from a to b? No one. That's who.

We trade. All of us trade. Every minute of every day. You make the tea this time and I'll make it next. You have your favourite food this time and I'll have mine next. I am exhausted but you're driving 300 miles so I'll down 3 cans of Red Bull so I can keep you company.

Trading is what moden life is built on. So here's the thing. Yes Ingress is spyware. So is Facebook. So is G+ and cookies and ten thousand other little things in modern life. I don't want you to take it away. I want you to educate me so I can make an assessment if this trade is of enough value to me that I'm prepared to let some of my data go. Millions of people don't understand their data is the trade. Fix that. Don't give me another flipping product.

If you can't deal with me sad, you don't deserve me when I'm happy

I'm a ball when I'm happy and a mare when I'm sad. When I'm sad and ill, I have to make a judgement every second on whether you're the person worth spending some of my hard hoarded energy on. This weekend, people were not draining. No one drained. I didn't need to pretend. I just was me. I dropped the mask, stopped pre-empting every conversation with a disclosure and decided to see how I got on.

I ended up, with three other girls, designing my wedding dress. There was laughter, there was smiles, there was tonnes of chatter. Something I was so worried about became something joyous, something to enthuse about. Why would I want a dress like everyone elses? I'm not like everyone else. I'm like me. Some people spend the time to get to know me and understand me. Those are the people who attend Nine Worlds. They like to think. Sometimes. They like to party. Sometimes. They like to understand people and help them, all of the time. Yes, I'm autistic. Yes, I'm aspie. Yes sometimes I couldn't hear stuff cos of space and sometimes conversations were in the wrong space. Sometimes there was sound leak and sometimes people were too raucous. All of this was drowned by nice. Nice people. Good people. 


Women are very present at Nine Worlds. In panels, organising, volunteering, attending. There's a feminism track. Of course there is. But this isn't a place where those discussions, you know the difficult ones, the ones that make you feel sad then angry? they're not limited just to one track or one room. They're happening everywhere. Game of Thrones and rape as a mechansim. Needlepoint and traditionally women's crafts and how we subvert that and is woodwork more serious somehow? I wondered into a Do black holes exist talk and understood every word - so did the other women there. Women were cosplaying but so were so many men. The fanfic track? I didn't go anywhere near it but I suspect there were women there too. Many women. All squeeing madly about their OTP. Does it matter? Not at all. 

The thing is, if you create a space where people can flit from deep thinking to fangirl squeeing, that's what happens. Suddenly, I am not boxed as a fangirl or someone who likes to think. I can be both. I can be shallow. Just because I like to discuss the ins and outs of astrophysics doesn't mean I have to. Doesn't mean I want to. 

It's okay to be shallow. It's okay to have fun. It's okay to love the things you love deeply and dearly and still fancy the male protagonist. Or the female one. It's okay to be big and dressed as Wonder Woman, childrens reactions to you will be just the same. It's okay to wield a massive hammer and not be dressed as Thor. It's okay if you don't wear make up and it's okay if you do. It's okay if you want to learn how to braid your hair and it's okay if you want to learn how to sword fight. It's all just fine.

Promenado no no no

Gollancz held a 'book launch' on the Saturday night. Ventured in. Lots of people networking. Walked out. Ventured back to thank Adrian Tchaikovsky for his books. He was lovely about it. Ran away again. Nope, still not dealing with this enforced social thing. Okay, that's fine. Maybe next year. 

Just a moment is always awesome

And what else is there to say about that.

Thank you Nine Worlds. I came, I was nervous, I needn't have been. I found, I laughed, I chatted, I made friends, I missed seeing some others. Nine Worlds is simply awesome. 

Monday, 21 July 2014

Autistic dreams & other stories

Two people are standing outside the loos in Starbucks in Preston. One of them hasn't seen another human apart from their partner in quite some time. The other of them came around from a general aneasthetic 4 hours before.  Prior to this moment, the conversation has covered quantum mechanics, the wool corridor that is still the Leeds Liverpool canal, sine waves of brain activity and function and where trashy novels intersect in those waves, and cancer. We're waiting for the partner of one of them.

'Humans eh' says one to the other, piercing them with eye contact. 'Completely unpredictable' they pause for few seconds 'until they're not'
'Yeah' the other replies 'Sheep'
'They can be so fascinating, and yet so boring'
'Schrodingers people'

There is laughter and reflected back at me is the light. It's important that light. It is, I think the thread through this post that I suspect will become very long indeed.

Wind back 12 months.

'I don't know who I am, who are you?' is looping around and around and around in my head. I write it down on a post it note and post it to my Instagram. None of the answers that come back help. It doesn't interupt the loop. Around and around it goes.

The therapist tries. To her credit, she accepts I am not stupid, just broken. I tell her I've done CBT and currently it's like posting a paper origami boat into a tsunami and hoping it will help. My mind is a tsunami. It is sucking everything, absolutely everything  into a massive wave and then that wave is crashing down over me.  It feels as if pieces of my brain were literally being swept up, churned into a seething mess and then hurled down onto a stone beach where they smash into pieces.

I am in a constant state of terror. I don't know if at the time but I've almost literally terrified myself to a stand still. I can't walk. I can't talk. I can't verbalise or articulate or write or tweet. I am literally a piece of meat. The electrics have either gone out or there is a super cell stuck in there, stuck in my brain.

Underneath all of this, of course, is the bubbling narrative of failure. I failed. I let every one down. I was supposed to be kicking ass and instead I was quietly dying, all the systems going off line, giving up, giving in, all the fight sucked out of me by cognitive absence.

That sounds like depression doesn't it? Doesn't it just. It's not. It's far more complex than that. I, it turns out, am far more complex than that.

Depresssion sucks everything from you. And the state of this being is similar for most of those who suffer from it. @markoneinfour has kept me anchored without even knowing it. But the cause of the depression, I believe is different for everyone. Everyone has different triggers. Everyone suffers but everyone I think also suffers differently. I am thankful, so very thankful to my GP for understanding that sometimes she has needed to leave me alone, sometimes she has needed to let me come to her of my own accord and ask for pills, and sometimes she has said the wrong thing and I've backed away for a bit, needing time to think and work out and rationalise.

So why the terror, I suppose is the question. What triggered it? And I'm sure the easy answer would be GDS, would be travelling up and down the country every single weekend, living in two places at once. That answer would make a lot of people happy. But it's not the truth.

When I was 12 years old my world changed. I got my first period. My mum didn't talk to me about periods. She didn't talk to me about anything. She managed to apologise earlier this year for not being able to cope with being a mum to two people. And that I'd beent the one without a mum, essentially, came as no surprise to either of us. The apology came as a massive shock. I suspect to both of us.

The point? I don't ask for help. There has never been anyone to ask for help from and so I have essentially worked through my life with the same attention to detail and focus that I apply to everything.  It makes me selfish. It makes me focussed. It makes me stupid and oblivious to the disintegration of my own state of mind. I am so close to the problem I can neither see it nor feel it.

Normally, my other half can spot when problems are happening and it's a standing joke that he acts as my personal people interpretation module. I didn't have that in London. Oh boy did I not.  I should have worked it out when a colleague decided the only way to tell me how fucked off with me she was was to write me a letter telling me then reading it to my face. I should have worked it out when I couldn't find anyone in the 200 people office, instead needing to gchat people to ask them where they were. I should have worked it out when the amount of meetings I had in the day inversely affected what time I needed to go to bed (9pm most nights). I should have worked it out when I lost my appetite. When I couldn't sleep.

Some of those things sound like depression.  But not all. Not all of them by any stretch of imagination. And the penny didn't even drop when I took the 'Reading the mind in the eyes' test and got something like 8 out of 40 and I guessed those 8. And having to look at nothing but eyes for 20 minutes made me feel sick to my stomach and quite panicky.  Not when a colleague sat me down and asked me if I didn't realise I couldn't deal with people sitting opposite me and interacting with them and felt much more comfortable sat next to people and even my hobby involved talking to people next to me - riding bikes.

It's all so glaringly obvious to me in retrospect. Not to others though. 'I am autistic' I say and they say 'no you aren't, you can't be'.

Well here's the thing. I am. The 45/50 says I am. The trained qualified clinical psychologist says I am. But truth be told. Tony Attwood and his absolutely mind blowing explanations of how autism and especially Aspergers affects women rather differently than men told me I was.

I've been diagnosed with Autistic Spectrum Disorder, Depression and Anxiety in the space of 6 months. 'I don't know who I am, who are you?' still runs through my head. But alongside it runs something else, an understanding, an ability to cut myself some slack. The person who read me the letter didn't understand why I was coming across one way when I was intending to come across in a completely different way. My boss didn't understand. No one understood, least of all me. It turns out, in the end, that the prevailing theory is that I am allergic to people currently. If I spend any time with anyone but my other half, I pay for it. I am exhausted, often for days after. We think that this is because I am doing so much processing trying to fit in and not stick out as being different that I've worn out my brain a bit. While I was in London I was trying to do the following:

  • Process the interaction scripts for 100+ people
  • Remember the faces and names of ditto
  • Get myself dressed and out of the house looking presentable (not smart or anything, just enough to raise too much comment)
  • Eat properly when I can't cook
  • Sleep properly and enough to recover from exhausting days when sleep has always been an issue, insomnia being the least of the problems as it would suggest I'd gone to sleep in the first place
  • Manage a workload that was at the high end of the scale 
  • Attend at least 3 meetings a day at one point, resulting in high intensity interaction for 3 hours every day
  • Remember pretty fundamental processes like going to the loo, drinking enough in the heat etc
What I'd like you to do, is think how your friends daughter/son who is autistic would manage all that. Now I want you to imagine you don't know there is anything wrong with you and you're sat in the absolute best job on earth that hundreds of other people want and you don't know why you're struggling. Now I want you to imagine your support network has disintegrated and you're miles from your boyfriend and you hate speaking on the telephone with a passion unrivalled because you don't know when you're supposed to speak in a conversation even worse than you don't know when you're face to face with someone.

Body language. Knowing when  to talk in conversations, knowing when to shut up ,when to leave, when to arrive, when to leave someone alone....yep, I bet some of you are nodding your heads right now.

The simple fact is, I was burning through massive amounts of processing power, just trying to look like all of you. There was nothing left to do my job. I remember someone commenting loudly in the office that I looked exhausted every evening.

Well I was. This is why. I was, as servers go, running at max. The line was at the top all the time. It was so bad by the end I couldn't drop out of fight or flight. I'd been in it for months by that point. It was normal. I burned through all my reserves, I burned through everything. Right down to the bone.

And then I snapped. 

So if you don't mind, considering where I've been, how I've felt and what I've learned, don't reply to this post with 'You can't be autistic'.

I can, and I am. And I am slowly but surely learning how to not spend my entire waking existence pretending I am just like you. I am not just like you. My brain is not like yours. I do not see the world the way you do. I like that. I don't care if you think this is awful and a waste of talent and time. I couldn't give a flying squirrel.

I am autistic and I am proud of it. I see such beauty because of it. But I also see such agonising sorrow. So yes I have depression. Is it any surprise? But I also have hope. I have some slack with which to cut myself. I have a thing to choose to disclose, and I choose to disclose it here. If you think you can still work with me and understand that this actually changes nothing in terms of my intelligence, my speed, my pattern matchiung, my life loving, question asking joy, thank you.

If you don't want to know me, or talk to me, or work with me any more, then I am sorry. Sorry for you. Good bye.