A Shiny World

Hearts and minds

noreply@blogger.com (loulouk) — Fri, 10 Mar 2017 15:50:00 +0000

Blogging on work time cos this is work. Because I write to work out what I think and this is work thinking. (Well 5 minutes of it but...)

So I've been tasked with two things. One, provide a management dashboard which provides two level of analysis, top level easy to consume and something a bit more granular but nevertheless useful.

Yep, non data nerds, exit over there ->.

Rest of you. Hi. This is sort of a week notes thing, which I said I'd do a bit ago and didn't but also some thinking out loud.

I work for a mental health charity in Lancashire. Across 5 main sites and quite a few satellite sites which constitute a 6th, essentially, we provide two main arms of service and thus two main sources of data. We have Women at Risk - the criminal justice work with offenders, ex-offenders and low level offenders, then we have the IAPT provision side of things. Both focus on mental health, with a healthy side order of employment, housing, health, advocacy etc support.

We currently work only with women. A big focus of our work is how gender swerves the delivery, care, approach and attitude where it intersects with mental health, health and the criminal justice system. This is why I work there. I believe in what we do very much.

Because of this belief, data isn't just data to me. When I was dealing with bin rounds and other environmental stuff at Blackburn Council, I have to admit that I did sometimes lose sight of the fact there were actual people behind the house numbers. But at 55,000 addresses and counting, there are only so many stories you can tell about a missed bin or an unfilled grit bin. This is different.

There is a sense inside me that I owe something to each of the women we help to tell their story somehow, in numbers even if not in words. We couldn't actually tell 3000 stories, for a start, peoples attention would have wandered, and so this is why numbers are useful - they allow us to comprehend difficult and large without needing a tea break every 5 minutes.

So that's the why.

How. How do you rig a management dashboard which reminds everyone reading it what we are doing and why?

Weirdly, I am coming to understand that language matters. So, what do we want to tell people. Recovery rates, well that's useful - it's a key indicator of our effectiveness for heavens sake. Except under a heading of Recovery rates, I see x percentage of people entered our service at y level of depression or anxiety and exited at z level and what it does it tell me?

It's just some numbers. So is it that in the same way we accidentally other people by the language we use (and this is a fantastic blog post on the affect language can have on people, it is not an imaginary thing) perhaps we accidentally reduce people to nothing more than numbers by the language we use. So instead of Recovery rates - people who got back on their feet. People we helped feel better. People we got back into the world. People who regained themselves. All the same thing, all the same actual numbers but the terminology is so much more...positive, somehow.

So that's my proposal for the management dashboard which is going in front of Ops and our CEX. To be human, to make the numbers human, to be different in the way we refer to people than our partnerships, because we are different in the way we are with our clients than our partnerships are - through necessity, or through freedom.

The next thing I need to think about is visualising this data, as my boss wants something 'interesting' to go in front of the Board.

So I got to thinking - the one member of the Board I've met, she got the people thing. She said she loved to hear about the successes, that what we achieve and how we achieve it is phenomenal - and I don't disagree. But how do I show her, and the other members of the board how phenomenal our team actually is?

Again, I feel like the key to this is language, but also pictorial. That somehow there must be a way to represent who we are as an organisation, a culture which frankly if we could bottle it, we'd make millions from - I mean we're so start up it hurts and we're not even a start up for heavens sake...

Perhaps that's the thing. In refusing to be just like everyone else in the way we do our business, in the way we conduct ourselves, loudly and proudly different but screamingly effective - perhaps that's the key to explaining what we've achieved and how we've achieved it?

So what would a start up do? Start from nothing. No assumptions. No 'we've always done it this way'. No 'should', or 'can't'. Just... an empty A3 piece of paper with no expectations and no preconceptions.

When I come back from leave next week this is what I am going to do. Sit with the figures and the numbers, the achievements and the stories, and a blank piece of A3 people and just doodle. Be creative. Permit myself to not be a numbers person, just for a second, and indulge the bit of me that creates knitting patterns, that draws and colours and spins and photographs and stares entranced at rain falling through the light of a lamppost.

Data analysts are normally binary. I am not. Time to use that, and think differently and embrace the differently.

(If anyone wants to share their dashboards or Board presentations with me, I'd super love that - but can you do it in a fortnight when I've yanked all the crazy ideas out of my head first? I don't want to be influenced by anyone else, just for a bit. And I will of course be back processing this the entirety of next week while having fun relaxing in warm waster and turning into a prune, because that is just how I roll)

Technical Tinkerbells

noreply@blogger.com (loulouk) — Wed, 15 Feb 2017 15:55:00 +0000

All my life I've been searching for something...wait, no, wrong line.

Actually no. No it's not. Because all my life I have been searching for something: at work.

My first permanent job was as a 1st line tech support bod for a company called iDesk in Wembley. I was the only girl. I got Wing tucked - well you would. But I didn't wear make up, I didn't wear skirts or dresses or heels. Occasionally I'd leave work to meet my then boyfriend and if we were going clubbing I'd get changed at work and slap some make up on. Cue confused looks from all the lads - delayed recognition, as if the swan wasn't supposed to exist under the tomboy. You'd think red lipstick was a mask to hide behind or something...

I have spent a large part of my working life in the same situation. One of the lads. One of the boys. I am not naive enough to think they discussed things in front of me they'd have discussed when I wasn't there but I ended up flat sharing with a lot of them at some point or other and if there was ever any awkwardness I never picked up on it. And of course; boys. They'd have told me straight if there was an issue.

After a while I just presumed I couldn't do friendships with women. That there was something intrinsically broken within me. And of course that came across in my interactions with them and became a sef fulfilling prophecy. Not helpful, I now understand. Though I didn't then. The double edge sword of self awareness.

And so it was that with some trepidation that I went for an interview for a 99% female workplace. I checked - I asked a very trusted female friend what the culture was like and she told me to shut up, quit worrying and get off my ass.

So I did.

It was the single best thing I have ever or will ever do in my life.

Women. They run the world. No, really they do. Or these women do - their own worlds. They are mothers, grandmothers, aunts and sisters. They manage children (4 in some cases!), their husbands, their families, their homes, their worlds. And then they come to work and fight the good fight for women with mental health problems next to me. And I next to them. A more diverse group of personalities, accents and backgrounds you simply couldn't imagine. A more varied idea of what fun actually equals to you couldn't either. Sexuality, disability, religion...all these things are spectrums and we have people on all stage of all of them.

And we all just get along.

And I'm making friends. Friends I would introduce to my existing friends in a heartbeat. Friends I tell the truth to. Friends I drop the mask in front of. Friends who ask, who help. Who I ask and help back. Who I feel such joy and creativity from. Such awareness - of worlds and personalities and differences and how to never make anyone feel like crap. Yet it's okay to feel like crap sometimes too. We all do and we're all just totally completely up front and honest about it. So the working environment becomes somewhere safe. A sanctuary. A place where you grow, flourish, can be brace, can be bold - but with the stabilisers on.

I want to say thank you. Thank you to all of you. You've changed my world. My perception of the world. You've opened my eyes and dropped my shoulders. You've helped me see where I fit, where I can contribute and where I belong.

You freaking rock.

Nevertheless, she persisted

noreply@blogger.com (loulouk) — Mon, 13 Feb 2017 20:28:00 +0000

My life is brilliant.

Even my childhood was, depending on the parameters you use. And perhaps for those who know the story, those few including my mother, that's an odd statement to make.

I apologise mum. You'll understand in a few pages time.

Someone I met recently explained to me what the best thing was about stepping off a plane from the Eastern hemisphere in our country. She said "not a single man was staring at me". Now think of all the things she could have said. That she didn't say. She said that.

You see, she had come from a country where not being stared at was, as a woman on her own, a luxury she was not afforded. Imagine her walking through the airport at the other end, being stared at. Undressed. I imagine her walking up and down the plane to the toilet on the long long flight. Being stared at. I imagine how I would feel if the same thing happened to me for the same period of time and I know I would wilt. This woman would never wilt, in any circumstance, or at least I cannot imagine her doing so, because she persists.

Last week, #neverthelessshepersisted trended on Twitter as a US Senator was put down, told to sit down, because she dared to reread words already written and I think uttered in Congress. She put down as being told, but persisting. It was a put down that resonated across the Western world with every woman who's been talked over, had their ideas parroted by a man and accepted despite suggesting it first, been frozen out of discussions in networking sessions for having the audacity to have a different opinion, with every woman who refused to know their implied place.

That's a lot of us.

But I lost sight of context, a context delivered to me in harsh reality this evening by Channel 4 News' interview with the accidental journalist and film maker Waad Al Kateab by the end of which I was crying. I feel no shame in admitting this. I think anyone who saw the piece wasn't the slightest bit moved, then they are a very cold person indeed. This woman, this one woman, started filming in Syria during the Arab Spring in 2011 on an iPhone. By the end, she was submitting film to the world as one of the few authenticated sources in Aleppo as it was retaken by government forces.

Inbetweeen she witnessed unimageable things. Things no woman should witness. Another woman, face covered in blood, no explanation of why - though I suspect her journey to the hospital bed she was lying on was anything but simple or danger free, though that was not the reason she came to be lying on the hospital bed. No, that was because she was giving birth. While bombs exploded around her. Now, I am not a mother, but I am a woman. And I believe there is one moment in a woman's life which is absolutely sacrosanct, and that is when a woman is giving birth. But war leaves no room for sanctity. The baby didn't breathe for 12 minutes. For 12 minutes, an all male team of doctors did CPR, never relenting, never giving up, perhaps in acknowledgement that one more miracle that day by that point would not be too much to ask.

A trio of brothers arriving at hospital, one of them beyond rescueing. The grief, the respect, the maturity and one broken moment of the other two brothers that will never leave them, captured on screen forever, a brutal reminder that 2 brothers under 10 years of age, should never lie weeping their hearts out the side of their dead brother.

And all the while, this woman, the woman behind the lense, had her own baby at the start of the war, and by the end had given birth to another. A woman who still dare not show her face on British TV for fear of repercussions for her actions. A woman who stayed, right to the very last, in order to tell the haphazard, disastrous, chaotic, story of the evacuation of Aleppo. With her own children in the back.

No disrespect to anyone else, but personally, I'd like to nominate a new woman to be the target of #neverthelessshepersisted. What I'd really like is for her to gain the recognition she deserves. Because standing at a lecture in an unbombed, fully supplied with electric, cleaned daily, with scanners at the entrance, full security, and a complete roof - well, lets just say I have no less respect for her but this evening has reminded me that women's challenges in this world are relative.

If you would like to know more about Waad Al Kateab then I recommend the beautiful page over on Channel 4 which gathers her most gut punching films together.

#NeverthelessShePersisted

Intensité

noreply@blogger.com (loulouk) — Sat, 11 Feb 2017 15:44:00 +0000

One of the headline behaviours of autism is the meltdown.

I found myself explaining to my neurotypical coach on Friday what it felt like. He looked surprised and after processing the 2 hour session, I realised the reason why.

I didn't talk about sensory input/overload. I talked about emotional input/overload.

The typical presentation of meltdown is this: a child in a supermarket, throwing a tantrum on the floor, while an exasperated mother looks on with an embarrassed look on her face. There is inevitably someone in the background looking on disapprovingly.

It bears absolutely no relation to my own experience whatsoever. Reason number 57 why I couldn't possibly be Aspergers. I never had these meltdowns. I've asked my mother. She has no recollection of my doing so either. What she does recollect was my lack of crying. Lack of anything. I was a 'very contented' baby. Until I learned to talk. At which point my favourite word was 'bored' shortly followed by 'why'. I didn't nap in the afternoon - mum says she so sorely wished I had because she needed the rest. I don't blame her. It must have been weird - I was her first and I just wasn't behaving the way she was being told I should be. There wasn't anything wrong - not yet. In fact quite the opposite. Ridiculously high IQ at 5. Ridiculously high reading age and vocabulary at 5. At 6. At 7. At 8.

I was social...well no I wasn't. I didn't play with dolls. Or the cradle my father handmade me out of wood. Not the dolls house he also made me. (I have no idea what happened to them or where they are now). Don't jump to conclusions. I didn't play with toy cars either. I played with nothing that required imagination - strange to think now for someone who has such a wonderful internal world to retreat to when needed. Except of course that that interns works is a patchwork made up of every experience I have had, everything I have seen, felt, heard. But I've explained that before.

At 9 it all went wrong. I stopped talking. I got headaches when I tried to do my math homework. Home was...well it was at this point things went very wrong there too.

But school was awful. The first two years less so but the point where they put me in a 'stupidly smart' group and I was the only girl in a state middle school resulted in my first day sick from school ever. It triggered something. An awareness that before that point I have been obvlivious to. I was different. Marked. Worthy of the (wrong kind of) attention.

This should, according to the literature, have resulted in my meltdowns increasing. Being able to mask at school but coming home and acting out is so much of a classic autistic behaviour it's almost tripped into trope. Instead, I disappeared. Into myself and my head. And I didn't come out until I told my 'best friend' my parents were separating a good 5 years later. In that time there wasn't a single meltdown. There were fainting spells - a particularly mortifying moment in school assembly in front of the entire House (still a State school) in which we had to stand as we couldn't all fit. There were days when I didn't speak to anyone at all unless spoken to. More than I'd like to remember. But no meltdowns.

We call them 'shutdowns'. I know this now. They're only supposed to last for the same amount of time as a meltdown according to the literature. The literature is wrong. Because, I think, it's different for girls.

I didn't have my first meltdown think I was 19. I punched a hole in a noticeboard in the Student Union. I'd like to say it wasn't about a boy, but of course it was (we're still friends, we still chat on Facebook, bless him). Switching from closed off to open was always going to be a bumpy painful process and it was. It wasn't all bad. A lot of fun was had. Adrenaline. Risks. Dancing all night. But those moments when I lost control scared me. Scared me to death. Because I had become the queen of control and it losing it wasn't something I wanted to be doing, least of all in front of other people. It scared me with its intensity. It scared me with its speed. And it scared me with its ability to leave me defenceless and vulnerable. I didn't have the word for it. I didn't know.

Over the years, as I got myself into more and more intense difficult stressful situations because I didn't have the self awareness yet to know my triggers, the meltdowns increased. I got called Princess. I'm sure behind my back I got called worse. I got confused because I'm not a princess - I'll muck in with anyone, help anyone out who needs it - it felt as though there were two sides to my personality - one super nice and helpful and lovely - and one who just walked out of social gatherings when leaving without saying goodbye because she didn't want to interrupt conversations and didn't think anyone would notice (yeah sorry for the worry I've caused over the years folks).

Over time, much more time, I learned. I learned what environments caused these spikes. How to recognise when one was coming and remove myself from the situation triggering it. How to self care afterwards. How to redirect the intensity of feeling, both sensory and emotional, that I could feel. I learned to give some of it to others, to take some of it and funnel it into writing and poetry, drawing and dancing. Then kitting and climbing, hiking and mountain biking. I learned to consume all of that feeling before it consumed me.

I did all of those on my own. With no knowledge of autism, Aspergers, meltdowns, shutdowns. And it really really wasn't easy. I got into situations I shouldn't have. I got into arguments I shouldn't have. I reacted in ways I shouldn't have. I alienated people I didn't want to. I ruined relationships I didn't want to. I got into relationships I shouldn't have. I left relationships in ways I shouldn't have. I have left, it is fair to say, an utter car crash behind me in some places, car crashes I am still gently trying to atone for to this day.

I'm not saying they weren't my fault. I'm saying they weren't intentional. I think that matters.

But imagine if, when I read a book on Aspergers my mum asked me to read 10 years ago, I hadn't read that all autistic people have meltdowns. Imagine if that book had described shutdowns better. Imagine if I'd been diagnosed then, or even as a child of 11 when it all started going really wrong?

Now imagine how much pain, loss, confusion, fear, anxiety, unhappiness and turmoil we could prevent in the 1 in 4 of us who are autistic females if we just sorted this out.

Please sort this out. NAS, anyone else who's reading/listening, please sort this out.

This is my truth. Tell me yours.

Putting the people back into data

noreply@blogger.com (loulouk) — Sun, 22 Jan 2017 20:44:00 +0000

So. Official job title now contains data. Guess that means that I'm allowed to think about this stuff again...

So thinking I have been. I've got qGis installed on my laptop, along with 64bit Excel. I've got all the tools and all the toys. More importantly, I've got the most important thing of all - super lovely data that's actually important to important people to play with.

When I say important people, I do of course mean our service users. people with mental health problems, debt problems, offending problems etc. You know, those kind of important people. Not shareholders. Not politicians. Actual real people.

So it's really important to me that I think about this the right way, and I use the data I have to the very best I can, to get those important people exactly the kind of services and help that they want and need.

Yep - this is a post about data. and I'm still talking about people. That's not a mistake. It feels a little like the conversation about data has become all about empty fields resulting in zeroes and not about the people. Yes, empty fields/free texts fields are the spawn of satan. But.

That isn't where the stories are. Increasingly I am drawn to thinking about the people behind the numbers, the people we are supposed to be serving as data wranglers. Who are these people and what do they look like? UX design has personas - why don't we? Data visualisation is increasingly focused towards management information, and that's understandable, they are, after all, the ones making the decisions based on the data. But what if personas or some other way of visualisation the data still told management everything they needed to know, but still enabled them to keep sight of the people behind the data?

I don't have the answers. But I am doing the thinking and the questioning. I reckon that's a start.

Dear Sherlock,

noreply@blogger.com (loulouk) — Mon, 16 Jan 2017 20:18:00 +0000

Dear Sherlock,

Well, they say all good things come to an end. And so it is with you. I'm not prone to being a fangirl about anything really, as evidenced by my inability to fool my school friends that I really did think New Kids on the Block were gods gift to teenage girls. Or certainly not my idea of a gift. I wasn't interested in much though, to be fair, so nothing personal NKOTB. Anyway, never really been a fan in the true sense of the word. Until season 2 of Sherlock. Yeah, I admitted it, I kinda missed series 1 - I was too busy breaking myself in service to some deluded idea of that I could make a difference.

But series 2? We went back and watched series 1. Then we watched series 2 and Moriarty got me. But that wasn't the real reason I fell in love. Something a little more crucial happened between series 1 & 2 in my life - I started to suspect I had Aspergers. This resulted in some consternation, thanks to you lot, the comments about being a high-functioning sociopath leaving me a little confused as I watched someone half me and half not walking across the screen, leaving a trail of offended people in his wake.

Why half me and half not me?

Well at that point in my life, I certainly left a trail of offended people in my wake. Offended, hurt, confused, distanced...but, and I appreciate this is a massive cliche, I did and do a lot of things that a lot of other people can't or don't. I feel a lot of things others don't. I see a lot of things others don't. People had always told me I was smart but I just compared myself to all my geek friends around me and came off worse. I've felt stupid, actually, for a lot of my life, measuring myself on social intelligence, rather than acknowledging to myself that it's not normal to find so many things so easy.

So I watched you. I watched you saying the things out loud I would never. I watched you affecting those people around you. More importantly, I watched how others watched you from the outside - how the audience reacted to you. I expected hate and fear. All I could see was a slow understanding dawning on people that there are some people who just don't work the same way we do. Kids with 'high functioning sociopath' t-shirts. Filming locations mobbed. Careers made and others resurrected for an entirely new generation. It turned into a monster. I know none of you expected it to quite turn out like this and I know for some of you it has been a double edged sword, occasionally a right royal pain in the arse.

But I wanted to write this to help you understand how this show has helped me. As a friend and writing colleague told me straight to my face with no frippery or fluff - I'm somewhere at the end of a bell curve and which end is only a matter of how you choose to measure me. From watching Sherlock I have realised that I too have a sort of mind palace. That I close my eyes and I can recall almost anything I've seen instantly with complete accuracy that I have ever seen. That being able to close a book and put it down and reread what I've just read again in my head isn't normal. That meeting someone once and reading a few of their tweets and being able to provide them with a 5 minute breakdown of who they are and what they do in their spare time and who their friends are and what they do with them, isn't normal. On, and on and on and on.

And all because of you lot.

I am aware from visting the Sherlocked convention that that 'you' encompasses a lot of people, some of whom I met and all of whom responded to my explanations of how the show had helped me with kindness and gentle curiosity. Well okay, most. But the one who didn't, well I should have worked it out way before that that was the one person who absolutely did not want to talk about Aspergers. Because I've been diagnosed now. And because of a group of people who laboured and loved, grafted and had their patience sorely tested at times, I am proud to be so. I even use some of superpowers for good now - I work in a job where not only am I allowed and actually liked for being me, but I can use those superpowers to help other people who might have them but haven't realised what they are yet. Because we all have superpowers, actually. We all do. The capacity to love, unconditionally and without question is a superpower. It's not one I have. Or rather, love to me looks different, feels different, is experienced differently. But that doesn't mean my way is right or others wrong. It doesn't mean that I am envious of those who can love like that. It simply means that that is a superpower. A valued one.

What I know now is that mine are as valid. I like them. I have understood that I can use them. And it's all cos of you. Cos of seeing a bloke who had some superpowers grow up, gain friendships, become part of a gang, understand closeness, understand love, understand different love and what it might look like for him, understand that family can be more than blood, that friendships can look different as well, that you don't have to apologise for being different, don't have to apologise for breathing, that family are difficult but worth it, that smart might be the new sexy for particular kinds of people (and those might be the kind of people he might actually find sexy back!).

The same journey I have been on, in the same time frame as your show has been broadcast.

So thank you. I wanted to say thank you. I hope the thank you screams from the words above. I have spent 6 years wrapped in a world where I didn't know the ending all the time before it appeared. Where I was actually surprised by an ending of a show when it arrived. Where, yes, okay, the eye candy was quite lovely, but more than that, so much more than that.

So thank you. To the cast, the writers, the producers (Sue Vertue still remains the nicest person I've met thanks to this show - your signatures inside my little book of Sherlock stories will remain my most treasured possession for a very long time to come), the crew. Together you have come together to make something beautiful, something smart, and to one woman who used to be a girl, something life affirming and life changing.

Yours
Louise

P.s.
Benedict - When I blurted 'Hi, I'm aspie too'... it wasn't planned. It wasn't supposed to come out. I was terrified and intimidated and it just came out. I know you're not Sherlock. I'm not completely bonkers. What I meant to say was 'I'm aspie and your portrayal of Sherlock has changed my life, thank you'. When you turned to me and stared me straight in the eye and said 'Are you?' in a tone of voice I actually can recognise, what I wanted to say was this:
'Yes. I am. And because of you and your portrayal of a man, I am so so proud to be so'. After last nights episode, even more so. Redemption. It's a beautiful beautiful thing. I wont say only you could have played him so well, but we both know few could have played him so well. Thank you.

Gladiators don't always wear suits

noreply@blogger.com (loulouk) — Wed, 30 Nov 2016 13:42:00 +0000

Sometimes they wear jeans. And suits.

Scandal is one of my favourite TV series. It's the story of a fixer in the political hotbed of Washington during and after a Presidential election. It's very good. You should watch it. The point of this is that the head fixer is a girl called Olivia. In the standout moment of the first season, the following conversation happens:

Harrison Wright: I’m a gladiator in a suit. Because that’s what you are when you work for Olivia -

Harrison: You’re a gladiator in a suit. Do you want to be a gladiator in a suit?

Quinn Perkins (nods head).

Harrison: You gotta say it.

Quinn Perkins: I want to be gladiator in a suit.

And Quinn proceeds to be a gladiator in a suit but also a gladiator in jeans. It's never expressly commented on in the series but nevertheless, that's what she is. Sometimes she gets a bit grubby and messy and assassin like. And sometimes she wears a suit. Why am I writing about this?

4 months or so ago I started a new job, It's a regional charity. So yes, I've gone from private sector to public sector to third sector. Some of you are sneering right now. More fool you.

Gladiators in suits.

You see, the charity sector has had to change as much as the public sector and I suppose if it makes you feel more comfortable you can attribute the culture of the charity I work in to that change, It's not the reason but if you need some preconceptions challenging, then that's fine by me. I'm happy to be the lightning rod and cut you some slack.

But gladiators in suits.

We work predominantly with mental health - Improving Access to Psychological Therapies, CBT and counselling but also group work both underneath that banner and without. But it's not quite that simple.

On my first day, I wondered through the door of one of our offices and sat on the sofas in the waiting room. A well dressed lady sat opposite with a cup of coffee and her beautifully fluffy well behaved dog at her feet. She sat quietly drinking coffee, thanked the receptionist for it once she'd finished drinking and departed on her way to carry on her day. I later found out she was one of our ex clients who popped back, just for a coffee. Mental health check ups don't always involve therapy.

I should at this point also say that we do mental health with a very focused gender approach. It means that at the moment, you are far more likely to hear a group of women's voices raised in singing or laughter, or the quiet murmur of women chatting within our centres. Perhaps because of this, the majority of my colleagues are women. Yeah. I know.

Female gladiators in suits. And jeans.

But we don't just do that. We also have a criminal justice arm doing some of the most innovative, challenging work with offenders I've come across - and I've worked inside the London Probation Service on a pilot programme accepted at the time as being one of the most innovative projects ever launched. From shoplifters to women in cells, sex workers to organised crime involvement, we seem to excel at picking the hardest nuts to crack and using a cushion to do it instead of a hammer.

Now that's not to say enforcement (or indeed Probation) are not involved. They are. Strictly. But what we do and how we help is different from what Probation do. We think so far outside the cell these women either are in or are at risk of being in that sometimes I wonder why the entire country isn't approaching women at the risk the way we do.

Do I sound proud? Good. I am. I'm totally cool with that, Sound like I've drunk the kool aid?

Well maybe I have. I watch this bunch of women who are, in the majority, so self aware because they have been through counselling training themselves and so as a result have had to go through counselling themselves as it's now a requirement of training, wrangle some of the most difficult situations I can imagine. I listen to immaculate ladies with perfect make up, hair, handbags and heels tell me about taking women to hospital who have self harmed, gone to A & E, not been seen soon enough so left to attend one of our centre's self harm groups (Yes I know - but there's a strange logic there all the same, don't you think?) and been taken back to A & E by this lady...I listen to another lady explain how a woman is struggling with her first ever relationship where violence has not reared its head, a massive huge gobsmacking break through for that woman, a breakthrough we have supported and helped her through, with no more acknowledgement that that is a phenomenal achievement, a magical thing, than to say the postman has been.

It's not that she does't care - she very evidently does. It's that this is her normal and so in becoming her normal, perhaps her superwoman cape has become invisible. This same woman meets with Police Commissioners, with all kinds of very important people and deals with them with the same confidence, elegance and presence that she brings to everything.

But it's not just about the frontline staff. At our Staff Development Day we were asked to think about how we contributed to a person centred service. Back office staff including myself were very quiet. Then one of the frontline managers pointed something out - how do you deal with some of the most difficult, awful, challenging things you will ever hear, day in and day out? By being greeted with a smile, a joke, a laugh. By sitting through someone having a bit of a splurge about their son doing something silly, or their daughter going to university. By listening, without judgement and with empathy as those gladiators in suits (and jeans) continue to be gladiators. Their job would be much harder if they had to face lions in the back office too. But they don't, and the reason they don't is because perhaps we too are gladiators but in a different way. We are empathic too. Perhaps in some cases, overly so (raises hand) so we can't do what the frontline staff do. And maybe because we know this about ourselves, maybe we are slightly in awe of those who can, maybe we will happily spread glitter, fairy dust and cheer, if it means that indirectly we can help someone have the first non violent meaningful relationship they've ever had.

I think the charity sector contains some amazing stories. Of hope, of determination, of success in the face of such utter life chaos, troubled backgrounds and adversity that sometimes the words just blur a little. I think it's easy when you work inside the charity sector to lose sight, perhaps, of what you do, how amazing it is. How groundbreaking, how crucial, how phenomenal it is. I know some can't acknowledge that because to do so would not sit easy with them - I know of no one within our own organisation who blows their own trumpet.

And so it feels as if it falls to me. I am not a gladiator in a suit. Or jeans. But the day before I started my job I said I felt that finally I was on the side of the angels. Angels with dirty faces, that's as maybe, no one's damn well perfect. If the angels were they'd be useless anyway - how on earth does a perfect person gain the trust of someone who's seen things you can't even imagine? So I accept those imperfections without blinking whilst resolutely believing that if angels walk, they walk in the guise of gladiators in suits. Or jeans.

Bendable, poseable

noreply@blogger.com (loulouk) — Sat, 24 Sep 2016 03:27:00 +0000

So.

I have a new job. 6 weeks in and I haven't quit. You may raise an eyebrow but believe me it wasn't a foregone conclusion. I'm not going to lie about how hard it's been. The job is wonderful - and more about that at some future point in time because there's a queue of blog posts I've been too tired to write, about culture eating everything, work life balances, money not being everything, getting roped in to silliness, about walls coming down and being a happier, chirpier, sillier person who does a sort of nerdy spreadsheet and database orientated job - but this is about working with EDS and Aspergers.

Cos it's 4am and what else would I be doing ;0)

Oh yes, sleeping. Let's talk about that, shall we.

Both EDS and Aspergers come with a common symptom. A lack of proprioception. It means a lack of awareness of where limbs are in space and time. Well for me it does. I knock things over. I am clumsy. I trip up steps and downstairs. Until I knew it was an issue I fell down stairs at least once a year if not more. I've sprained each of my ankles more than 10 times in my life and had more X-rays of my ankles than I can actually remember now. I'm sure Accrington Victoria walk in centre know me by name. I walk into door jambs. There is a reason I ride a motorbike. There's an entire lane around me to be safe in. And somehow it's less of an issue. I've not overbalanced once on my bike in a year of riding - something my brain injuried mum also testifies to as a thing.

Anyway. I'm a bit flaily and all my physio has been dual centred - teaching me to be less flaily. This means conscious movement every second of every day. Before I stand up from a sitting position I have to think, right down to how I'm going to place my feet on the floor - or I'll dislocate bones in my feet. I have to think about how I walk, what my core is doing so my pelvis doesn't tip backwards and exacerbate my curved spine, where my knees are and are they going backwards...

You can't do that when you're asleep. You're off. Powered down. And that's kind of dangerous for us bendy people. We joke that at least we can't dislocate our boobs but it's not a joke - anything with a bone in it is at risk. I've sprained elbows, shoulders and ankles in bed. I've dislocated knees and fingers. I've woken with dead legs and arms or with hands stuck in a claw position.

And there is absolutely nothing I can do about any of this. I'm asleep.

Predictably, however, not for long. Dislocating things is painful. Not the kind of pain that bounces off happy. Not the kind of pain like a headache. Or even a migraine and I know, I've had a few of those too. And it's not that I can't deal with pain either - I've been walking around with heels 4 cm lower than my toes for years and just got on with it because I didn't know anything was wrong. I've ridden a pedal bike through a migraine. I've ridden 100km on my pedal bike and had to stop halfway through to have a cry because my back was spasming so badly. I am pig headed as hell and twice as stupid sometimes.

Dislocating joints hurts. I am embarrassed to admit that I have laid on our living room floor and screamed after dislocating my knee.

And then you start a new job. And you know that professionalism is crucial. Gaining respect and trust that you know exactly what you are doing is crucial. Being seen as someone who is strong and determined, who is disabled but relentlessly determined is crucial. Because you refuse to be seen as anything less. Because you have pride still, unbelievably, even when you've been reduced to a screaming crying wreck. Because you're human.

And you know that one day, inevitably, all these people are going to see the absolute worst of you. All your vulnerability and all your loss of control over the pain you try so hard to never let show. Because pride. Because people worse than you. Because professionalism.

Lack of sleep also makes the pain worse. Unfortunately. Pain bounces off happy. But a side effect of unstable joints that wobble all over the place because the ligaments are made of plasticine because faulty collagen is pain. So sleep is crucial to me. I have to sleep to be happy. To be resilient. To be able to put my face on, retain my dignity and not let it show. Hell, being happy makes me forget the pain is there, allows me to deal with it without even thinking about it. Happy is magic. Sleep is magic. Sleep is recovery.

So that's why one wrong move can land me in a & e. One wrong move can dislocate something so easily. And that's why sleep is crucial. And it's currently 4am and should be asleep because I want to go to an event I've been looking forward to for an entire year tomorrow (today).

But then. I have an amazing job with amazing people. My days are full of focus and concentration but also laughter and kindness. I have spare sometimes and whenever I do I give it to someone else. I don't mind - it helps me cope too, giving something out. I have self worth and self belief for the first time in years. I have so so much I didn't think I was ever going to have again.

So I guess the point of this is; if you hear me moaning about a lack of sleep, don't think I'm being dramatic or worrying too much or stressing. It's not stress. It's just a fact of life and one I'm okay with. But that doesn't stop me being apprehensive about knowing something will happen one day that will be embarrassing and pride denting and painful. I am human.

Paralympics

noreply@blogger.com (loulouk) — Mon, 19 Sep 2016 21:02:00 +0000

There is a cycle of acceptance for many things. Addiction. Depression. Grief. And disability.

The cycle, or circle is the same for all of them. Tediously so, at times, or so it feels. Everyone goes through it, everyone experiences it. Some faster than others. Some of us were born this way. Some of us acquired this way. This way is different by necessity, not by choice.

At times it can seem like choice has been removed. As though you will never have control again. You have to ask for help because nothing will happen if you don't. You have to be honest because nothing will happen if you don't. You can say goodbye to your pride, some of your friends, some of your aspirations and some of your ambitions.

Time passes.

You get help. The forces for good rally, slowly but surely. Some friends stay and some reappear. Some hobbies stay and some disappear. Sometimes it's unbearably hard and you don't know how you'll get through the day, never mind your life.

And then something changes. And there isn't a timeline on that. There isn't a judgement that anyone gets to make on that. Not unless you've been through it yourself. You'll be told that your pain is only worse because you're depressed. You'll be told to pull your socks up. You'll be told you're a downer and people don't want that negativity in their life. You'll believe those things. For a while.

And then one day you won't. One day, without noticing, you'll start to put the pieces back together again. Your life will be different. What you used to be able to achieve will be a distant memory. You I will find new aspirations, new ambitions, some new friends, a lot of new ways of doing things. You will take nothing for granted and no kindness will pass unmarked. The world will look different to you and it will be for the better.

You will find coping mechanisms. They will be many. You will find inspiration in the strangest of places, find yourself crying at the oddest of things. You will make decisions that before were incomprehensible, with a calmness and equanimity that you didn't know you possessed. You will find yourself, your true self, stripped as it is of ego, of expectations, of pride and irrelevance.

Some will find it in sport. Some will find it in new hobbies which become new jobs. Some will find new jobs that fit better. Some will find campaigning. Some will find writing. Some will find mentoring and supporting others through the long hard journey they've just clawed their way through.

Whatever it is, however it is, whoever it is, I believe that the Paralympics have their place in this. I believe that challenging peoples of views of ability and disability, of darkness and light, of assumptions and judgements can only be a good thing. The Paralympics are a brief interlude of acceptance and celebration that increasingly lead us to ask why?

Why do we have to have 'special' ad breaks?
Why are there no cameras at parasport events between those 4 year interludes?
Why is my television so bereft of role models in between those 4 years interludes?
Why do I have to be superhuman to be accepted, to be visible, to be worth something?
Why does everyone have to have a story?

In order for the increasing upward swerve of the Paralympics to have legacy, we must ask these questions. And we must answer them. Otherwise, a 4 yearly lip service becomes meaningless.

Hello {goodbye} world

noreply@blogger.com (loulouk) — Tue, 28 Jun 2016 02:06:00 +0000

It's 4am French time. I'm sat on a picnic table in a forest in Normandy. I couldn't sleep. Grammar isn't guaranteed. Ranting probably is, to be fair.

The fundamental problem with a brexit, is this.

We can't leave the Internet.

A generation that didn't grow up with it voted to leave something you can't leave. I said a long long old time ago that the horse has bolted and you can't stuff it back unless it's dead. Brexit feels a little like trying to stuff that horse not only back into the stable, but asp trying to reanimate it.

Zombie horses. Yup, there's an analogy. It's 4am. Well it is here. And so I'm allowed. And while we're talking about here, let's examine that. I'm sat writing this in a field in a forest, between two lakes on the edge of the Perche Forest in the Department of Sarthe in France. I take my ability to do so for granted, the same way I took my EHIC card for granted, our whizz through passport control for granted, the way I used an English bank card to pay the tolls at the beautifully designed toll machines for granted.

I take a lot for granted, it seems. Stupid me. Like no one wanting zombie horses. Anyway. I'm on the Internet in a field in a forest. My keyboard can type é just as fast as it can type e. Perhaps that's a better example than zombie horses. But fundamentally the point is, I am connected. I can't disconnect. I don't want to. And to be honest, none of us under 55's want to. We're so used to knowing what we want when we want, we take it for granted. We are so used to fact checking and citation needed cries that we don't even think about it any more. We ask our friends on social media, we ask Parliament websites, we use open data, we do many many things to fact check. A lot of us don't even read newspapers any more - instead preferring to fact check ourselves, to try and find the truth of something without the unnecessary yet prevailing biases and agendas swarming all over our current media.

We assumed the over 55's were doing the same. They weren't. They were busy in a disconnected world, where you don't end up working in the same place as a team of crack Polish devs. Or where the latest bright young brain in your industry has honoured your workplace with their presence despite being based by preference in Amsterdam. Where flying for a weekend break to Basel is no more deserving of comment than popping to the local beach for the day.

They were busy voting to remain in a world which no long exists except in their imagination, coloured, blurred and distorted by rose tints, hindsight and the distance of decades.

We took our connected world for granted. We took our access to knowledge at our fingertips, pretty much for free, for granted. And we paid a high price. But perhaps in some way, where technology or rather the lack of understanding of it (we will always be connected to the world now, in a far more fundamental and permanent way than we ever thought) has led us to this place, it can now lead us out? Perhaps we can now think about media and it's place in snap of national consciousness. Maybe we can think about how we spread citation needed. Maybe we can have a think about our responsibility as comfortable technologists with the world literally at our fingertips and how we use that privilege to educate and comfort.

Just saying.

Have you danced around a maypole?

noreply@blogger.com (loulouk) — Sun, 19 Jun 2016 10:21:00 +0000

Well, have you?

The village in Somerset where I grew up was about as quintessentially British as you could probably actually get.

I've danced around maypoles. I've plaited corn dolls to show at the harvest festival. I've baked plaited rolls at school. I've been on a school visit to a farm to see a combine harvester in action. I've even visited a Cheddar cheese factory.

My primary school had one building, one portakabin. A garden and pond. And about 30 kids in it - the size of one class these days - 30 kids between the ages of 5 and 9. There was no other girl my age in the entire village. There were council houses, ex council houses and newish estates mixed with thatched cottages and a 20 room mansion next to a farm around the village green. Cricket was played every weekend during summer.

Sound idyllic doesn't it?

It also contained at least one father who was a paedophile. A young boy of 11 who moved in, raped a 6 year old, was caught and charged and moved away. Another boy who when I was 6 forced me back up against a counter in that primary school portakabin and forced me to kiss him. Yes I told my mother. Who told the school. Yet somehow that boy was able to grow up and be inappropriately hassling with my best friend on the school bus every morning because school was at least a 30 minute drive away.

Further down the road was we lived on - about 2 miles or so away was an abandoned airfield from the war which the local Sea Kings used for training exercises. On the edge of it lived a camp of travellers. My first experience with armed police was aged 10 (I think) when I came home from school to find a barricade just around the corner from our house manned by armed police who were looking for a gunman on the loose.

Then there was the local arsonist who was never caught who had a propensity for setting local barns full of hay on fire.

What's my point?

What, exactly, do you want to go back to when you say you want to go back? To an appearance of idyll? To a world which looked perfect if you tasted the icing but was rotten still underneath? Dry and crumbling to pieces, held only together by the pretty icing?

Perfect doesn't exist. Idyll doesn't exist. Neither can, because both contain people. Leaving Europe will not remove people's potential for evil. It will not remove bad people. It will just change the colour of the skin of the bad people, or change their accents. And in the process you will remove the counter balance to that evil - the good. The great and the good who come to our country and strive to change it for the better, contribute for the better, innovate for the better, code for the better, campaign for the better.

Balance is essential. Don't upset it in the pointless search for an idyll that you can only now see through rose tinted glasses. Let the light in - for without it the shadows will grow to fill all the cracks.

EDS & me

noreply@blogger.com (loulouk) — Wed, 11 May 2016 14:01:00 +0000

This month is EDS (Ehlers Danos Syndrome) awareness month. I was diagnosed with EDS Hypermobility in August last year. So I figured maybe it was time to share some of the ways that this random collection of letters has affected myself and my family and to try and shine a light into the wonders of what happens when the NHS is awesome. Because this is a tale of two halves. And the NHS is at fault, but it's also saved my life. A dramatic claim you might think, but one I believe I am entitled to make.

This post will be, I suspect, long. Grab a cuppa. Get settled. I'll begin.

When I was a child...

No wait, I should explain something first. EDS is a lifelong condition. You're born with it. The other types of EDS, of which there are currently 5 major ones, all have genetic markers which have been identified, I think. The type I have hasn't currently had a genetic marker identified but they're working on that. It most definitely can be a genetically inherited thing however, as my mum has it, as does my sister - she's just been diagnosed.

So I've had EDS all my life and never knew it. And oh boy does it explain a lot.

When I was a child, I was very active. I spent a lot of time hanging upside down because that was comfortable. I spent a lot of time being asked if the position I was sat in was comfortable as it didn't look very comfortable. It was. I spent a lot of time with cuts and bruises - most of which we knew the origin of, but in retrospect, a lot of which we did not. I spent a lot of time with either one of my thumbs bandaged and splinted - I sprained each one into double digits in the space of a few years. I fell off a swing one day (I loved swings, a very female Aspergers thing from what I can gather, see also hammocks for side to side swinging) onto cracked tarmac and spent a lot of time in A & E before not getting it stitched. The scar, to this day, is 1cm wide and 2cm long. It looks like no one else's scar.

It goes on. When I was 11 I suddenly developed massive vivid red welts all across my ass. It looked, my mum says, like I'd been sat on a screamingly hot grill wire. I had surgery and a general anaesthetic to remove 5 teeth and have a black stitch cut to get a tooth down from the roof of my mouth. I threw up blood after as the tubing they'd stuck down my nose had somehow failed to do its job. To this day I have a phobia of being sick - you try throwing up blood when you've got a phobia of blood generally.

The 'growing pains' started. Sat in classes trying not to cry at the pain and trying not to show it. I only failed once - the teacher made me feel like a complete idiot and I never lost control of the tears again. I stopped running because it was too painful. I was a good runner before then, anchoring relay teams in the 100m and coming in the top 10 of our 100 people year for cross country. I went to the County games to throw javelin. I stopped all of these things. Too painful. No one asked. I didn't bother telling.

In my teens I developed gastric problems. I wont go into details but I should really have known not everyone had crippling stomach aches which made it hurt to breath any more than a shallow grabbed breath and made sweat run down their foreheads into their eyes. I had to go for blood tests and it took so long to find a vein I was covered in bruises and looked like a heroin addict. It also hurt like hell. I asked around and no one else seemed to be having the same experience, but again I notched it down to 'you're shit at coping, just try harder and deal with it'. And so it went on and on and on and on. More and more systems failed. More and more weird things happened, that I now know to be weird but when you're in the middle of it you just don't pay attention. I started fainting randomly. I had heart palpitations at 14. I had to be careful how I got out of bed and to stand slowly, because otherwise I'd be flat on my face 10 seconds later.

At this point, I feel it very necessary to point out my mother was looking after my dad. He took all her time and all her energy and all her effort. She was doing her best to get help with looking after my dad because she knew we were suffering as a result and she did her best with absolutely zero help from anyone, from the NHS, from charities, from anyone. She was also suffering from her own medical EDS related hell which I wont go into but finally resulted in her getting it sorted 10 years after the problem had started after my birth.

In my 20's, I started spraining my ankles. I can't actually remember how many times I've sprained my ankles but I do know I can now literally sprain my ankle on a kitchen floor in socks if I'm not careful. It's over 20 times between them I do know that much - at least once a year, usually more. I had to have an emergency operation under local anaesthetic again for a spinal abscess . I'd left it too late because I'd simply put it down to 'put up and shut up love, you're just making a drama out of nothing'. And honestly, my pain signals were so messed up by that point that it just didn't hurt. Until the point where it hurt going over speed bumps on the bus and I couldn't sit on the floor any more (it's more comfy on the floor, trust me, I'll explain all this, the why's and wherefore's in a bit) and I figured I'd better mention it to my then boyfriend. Who took one look and said we should go to the out of hours doc on a Saturday, who sent me to A & E after respecting my wishes of no ambulances. Armed with her letter I was seen quickly, admitted quickly and then left for 36 hours with no food between 8am and 10pm while they tried to find a surgeon. Not that I particularly cared because I had no interest in food. But anyway, I digress.

That wound - the nurse said it resembled a knife wound (we were in Hendon in North London, I guess she'd treated some?) - took 3 months to not need daily packing. It went on and on and on and on. And on. My notes got bigger and bigger and bigger. She wrote up what she'd done every day. In the end my wound started to heal from the top down and they had to burn some of the cells away with no anaesthetic. Yeah. To this day, I have a scar which looks like a 50p piece with a dent under it. It's ugly and horrid and I feel sick every time I feel it. I haven't ever looked at it. I'm nearly 40. This happened in 1999.

Whilst all this was going on, my anxiety was becoming more and more of an issue. Not helped by dumbass stunts like my then boyfriend leaving me in the hospital, visiting once and completely failing to tell anyone I was there - like my mother - and not even bothering to be there to pick me up, leaving that to my housemates, nevertheless, other peoples dickish behaviour aside, I wasn't well mentally either. I fought and fought and fought against it, and mostly managed to hide it and never let it show - that incident with the teacher had taught me well that public humiliation by authority figures was only ever one careless show of emotion away - but occasionally it would break through. Like the time someone thought it was a brilliant idea to send someone with a blood phobia on first responder training and they showed us videos and I ended up on a heap in the ladies toilets floor hyperventilating. Or the time someone in another job though it was a good idea for my confidence building to become a fire marshal and they showed us that video of the fire in the footballs stadium and I went home and bawled for half an hour. Try as I might, trying to keep a lid on everything sometimes just didn't work and it came out occasionally in grumpiness, irritability and curtness. I was icy cold sometimes because that's all I could show in fear of completely and utterly losing it.

Into my 30's. Still no diagnosis and no explanation for why I seemed to find life just a little harder than everyone else around me. Still beating myself up that I was shit and not trying hard enough and I was intelligent and smart and should be doing better than this damnit. Things got slightly better in the first half of my 30's before completely and utterly crashing out.

It started with a dislocated knee. Which dislocated 6 more times in the space of a month. The pain from one dislocation would ease and another one would happen. I went to the doctors. They offered my weight loss surgery. I went away again. I went back two weeks later and was finally offered an xray and some physio. By this point, a dear friend was reading my Facebook posts at the time and alarm bells were ringing. The words hypermobility and EDS started filling my timeline and my internet browser history. It was like being given a key.

It would take another year, possibly 18 months actually, I can't remember, before I was finally, finally, referred to a Rheumatologist and another 3 months to see him and be diagnosed. Inbetween, I would dislocate my left knee a further few times, the forefinger and little finger on my right hand would dislocate, I would start to have bladder issues which were no longer ignorable and minor, and have major issues with heart rate, dizziness and bending down and standing up again without passing out. I would read and discover than not everyone could feel everything the dentist was doing during their root canal because the local anaesthetic didn't work, that not everyone threw up after fainting, that not everyone had major temperature crashes every time they had general anaesthetics, that not everyone could see every blue vein across their chest and down their arms and in their feet, that not everyone could cross their legs then wrap their feet around their legs again, that not everyone got a tired neck which meant they had to read with their head resting on their right shoulder, and not everyone cracked and clicked and had joints which seemed to slip and side at will, especially their ribs.

So, what is the cause of all this? Why does this litany of seemingly unrelated and frankly bizarre information all add up to one label and one diagnosis?

Collagen.

Yes, yes, I don't look my age, well done. And yes, it is that kind of collagen and yes that is probably why I don't look like I'll turn 40 next year, and also why my mother looks nothing like her 62 years either. Genetics, remember?

But collagen isn't just, unfortunately, a thing that affects how old your skin looks. Oh how I wish it were. How I wish I could slap some anti-aging cream on my face and be done. That would be so nice. Nope.

Collagen affects everything. It's kind of systemically crucial. It's the main component of connective tissue. There are different types of collagen and which types are affected depends on which type of EDS you have. Hypermobility type, the most common of all the types, is affected by faults in type 1 and type 3, Unfortunately type 1 is the largest type of collagen in the human body.
From Wikipedia:

This is the most abundant collagen of the human body. It is present inscar tissue, the end product when tissue heals by repair. It is found intendons, skin, artery walls, cornea, the endomysium surrounding muscle fibers, fibrocartilage, and the organic part of bones and teeth.

So EDS affects the structure, processing or production of collagen and collagen is present in all these different places in the body. Which is why my medical history looks like a car crash of confusing symptoms to absolutely everyone I've ever come into contact with in the NHS apart from one chap who is my Rheumatologist and who thankfully studied under Professor Bird, one of the leading brains in this area - or was until he retired. Which is an increasing problem, but anyway.

So my Rheumatologist. Is amazing. That's the first thing I want to say. I saw one of his doctors first and explained everything and within 5 minutes he'd disappeared off to grab him. He asked me questions, we took a tour of my scars (I'd just had a teeny tiny minor surgery under a local anesthetic on my arm so I could show him what my fresh scars looked like - keloid i.e. all raised up and above the skin surface), we took a tour of my dislocations and talked about all the information my mum had written down for me about her and my sisters problems.

And then he said the magic words. 'I'm referring you to my physiotherapist. She's a specialist in rheumatology. She'll understand exactly what's going on and help you sort this out. We don't believe in surgery here, we think it causes more problems than it solves'.

And so my work started which is still carrying on. I saw the physio for 3 months between September and December before she got promoted and moved on. Through her I was referred to a Woman's Physio and then onto Urology for help with my bladder problems. I was referred to Occupational Health who sorted me out with a home visit so I could have aids and help in my home to allow me to do fundamental things like shower without collapsing in bed for 2 hours afterwards, and bannisters on our stairs so I could walk up and down stairs properly for the first time since originally dislocating my knee. But more importantly than that, she diagnosed me with wrist nerve compression and the OT (Occupational Therapist) has sorted splints and supports to help with that. My little fingers are at a ridiculously funny angle permanently thanks to all the dislocations so I have a latex buddy sleeve to sleep in to help them come back together. I have thumbs which drop down way below where they should be so I have thumb splints to put them back where they should be.

But perhaps the most important thing to come out of all of this is the last referral.

The Rheumatology Physio, whose name was M and who works at Blackburn Hospital is perhaps the greatest star in all this, even more so than my Rheumy, though he is a star, because in his team, and almost everyone I have mentioned is part of his direct team, you can see the sense of pride and passion that they come to work with, and that he has instilled in them. A team is nothing without its leader and you can kind of tell he's a bit awesome at leading them. Anyway, I doubt any of them will ever read this but just in case, cos it is the Internet I'll stop there cos I don't want to embarrass people,

Except M. I'll risk embarrassing her. Because she did something no one else has ever done before. She got me to talk about my weight. Not by offering me gastric band surgery when I'd come to talk about something else entirely. Not by trying to persuade me into the kitchen where frankly I'm such a liability it isn't even funny - I have burned myself on a fork in a Pot Noodle. No.

She talked to me like a human being, with compassion and gentleness. She earned my trust, listened to me in other things (I found bed based exercises quite tricky because I kept getting dizzy every time I stood up so we reduced the amount of them I did) and eventually raised the question gently and quietly. As a result of that talking, I self referred to the Healthy Minds service because the Rheumatology Psychiatrist was just about to go off on maternity leave and they weren't getting a replacement. As a result of finally managing to be honest with the second person I spoke to who phoned me back, I was referred to the Eating Disorder Service locally.

Last week I started a 6 week workshop set with the Eating Disorder Service.

Not an easy one to type that.

I don't have a diagnosis. The Clinical Psych I saw said she didn't think anything would be benefitted from it. What she did say was that the reason I was having so many problems was exactly the same as the reason those with anorexia or bulimia have them and so the treatment would be the same - to learn about myself and why I do the things I do and hope to manage those thing and eventually stop doing them in such a harmful way. I left the hour initial assessment feeling like someone finally finally FINALLY understood me without me even needing to actually say anything. She knew things about me and my childhood and my life without me needing to tell her. And that more than anything else made me realise I was in the right place. Labels don't actually matter. Fixing this shit matters. I have EDS, my weight is affecting it and exacerbating it even if it is most definitely not causing my little finger to dislocate or my toe nail beds to turn purple (yeah I just noticed them, must do something about that in a second). I have to sort this out. On my own. With my brain and my effort and my thinking and my trying.

And oh gosh it's hard. The first workshop, last week, was by turns brilliant and awful. So many realisations about how I am and why I am. So much stuff to process that I think it took me three days just to work through 10 minutes of it. But I'm so grateful and so glad.

So when I say the NHS saved my life...

I walked into the Rheumatologist's office on a walking stick, on the wrong anti-depressant medication which was turning me into an unfeeling zombie who was still depressed, with no hope and sick to the stomach of seeing specialist after specialist who would do tests, the tests would be negative, and they'd drop me. Back to the GP I'd go to see yet another GP and have to start explaining the whole damn rigamarole all over again.

I now don't need a stick to walk at least half the time. I sometimes need it because I'm tired. Sometimes I need it because a bone in my foot is out and it helps. Sometimes I need it and can't use it because my wrist is too painful or I've dislocated my finger. It's a tool. I use it when I really really need it. Increasingly I don't.

I've dropped 3-4 dress sizes. OT have had to cut an inch of my thumb splints because they were so big for me the velcro went over the edge of the other bit of velcro it was supposed to be meeting. My anxiety is under much better control thanks to the right anti-depressant. I'm getting out of the house a couple of times a week and managing to go for small walks. I'm still very tired a lot of the time and that's something that will need addressing if it continues but I've just changed anti-depressants and tapered of 30mg of Mirtazipine in a week so you'll excuse me if I'm a bit shot to pieces at the moment. I'm managing to attend a group workshop. I'm managing to do a little bit of housework.

Slowly but surely, I am getting better. Except this isn't of course, something you get better from. There is no cure. There is only management. But the team effort of all those lovely Rheumatology people at Blackburn Hospital has changed one really really fundamental thing.

I want to live.

I can never repay that. I can never adequately express what that means to me. So instead I have written an essay, because it is an essay of thank you. It is my story of EDS and me and it is only just beginning.

[To the Rheumy team: I know I've said my heartfelt thank you's to some of you and I know this post will embarrass you horrid should you read it but I felt that explaining what EDS care should look like might help those who seem to be struggling with it somewhat ;o)]

Fess up time

noreply@blogger.com (loulouk) — Sat, 30 Jan 2016 02:01:00 +0000

It's time for me to fess up.

I'm autistic. And I create things. Yep. Me. I create things. I am a maker. I make things. And then I wear them. And then other people wear them.

I always thought I wasn't a 'creative type'. I looked at others with that label and I scorned them. I thought - wow you don't live in the real world. You can tell you don't come from a working class background. You can tell you've got money to indulge your creativity.

I was wrong.

Creativity isn't a thing. It isn't a label. It isn't something you make money from - though that's a happy by product. No. It's something you are. And it doesn't respect backgrounds. It doesn't respect class. It doesn't even respect mindsets. Because the truth will out eventually. And after 38 years I suddenly realise with horrified visceral horror that I am a creative. I create. Therefore I am.

Me and my creativity don't have an easy relationship. Truth be told, sometimes it feels about as comfortable as walking on coals. I hate it. I hate the 'creative process'. I hate that I end up sat waiting for Massive Attack to come on, frantically googling bloody fair isle alphabets while doing stitch counts in my head to work out if I can squeeze that word into that space. I hate that when I'm trying to sleep - an elusive state at the best of times - my mind drift can be interrupted by the perfect sequence and rythmn of words that absolutely had to be in that blog post that's been commissioned. I hate that I am the type of person who will fly, on a whim and a prayer, to literally the other side of the world for a day of meetings because that's what my brain needs right now.

I am engineer brain. I am rational. I am above this kind of crap. I am cold. I am zero and one. I am technology. I am circuits and networks and routers and switches. Except I am not.

I am not. I've been denying this part of me for 37 long cold years. I have been ignoring what my English teacher told me. I have been burying my head in the sand. I have been in denial. And I am silly.

Being creative isn't a bandwagon. It isn't an excuse. It isn't a badge to wear. It's who I am. With all my stupid empathetic loving too much drifting into words insanity. Being creative is what I am. As intrinsic to my core of being as breathing or eating or being warm. It's my life blood, the thing that keeps my heart reaching and beating. It's what makes me see. What makes me hear. It's what makes the word rush out of me, falling into the page in perfect order and perfect rythmn. It's what makes me cry at sunsets. It's what makes me stop at the top of a hill and wait until the twilight has fallen around me. It's what makes me love my other half until I wake every morning bereft again that he has left me. Again.

It is intensity.

My autism takes so much away from me. But in this? It gives. I am light. I am love. I am empathy. I am the cold dark moon and the sunrise that you will never forget for as long as you live. I wouldn't swap it for the world.

Merry Xmas from the Invisibles

noreply@blogger.com (loulouk) — Sat, 26 Dec 2015 01:26:00 +0000

Hi. I'm an adult with autism.

I magically become invisible at Xmas. Did you know that? My autism is magically erased. Come the chime of midnight 24th all adults are magically cured - until December 27th. Then we magically appear again.

I could forgive this erasure if the same charities managed somehow to realise that New Year might be as stressful for adults with autism as Xmas is for children. But no. No. Then the thoughts turn to how children will deal with all the fireworks at midnight. Nery a thought is given for the half of the 1% who are over 18 at this time of year.

I am genuinely baffled. Because if you think Xmas gets easier the second you turn 18, you're sorely mistaken. Some of us have children - yes, that genetically perpetuated link comes from somewhere - and some of us don't. But it's as if we don't. Don't have children and don't have parents. Children and parents who expect things of us. Things we can't be. Things some of us try to be and fail and in the failing feel desolate and alone.

I am on a group on Facebook populated by adult women with Aspergers. You should see that group right now. If you work with or for people with autism you should be in that group already but I'm gonna take a wild punt and say you're not. Because if you were, you'd be changing your happy little messages about how to help little Johnny through Xmas to include big Johnny too. Since it's a private group I can't speak for everyone else. I can only speak for me. I don't like Xmas.

Why don't I like Xmas?

Imagine you have no control over your facial expressions whilst being eagerly watched for your reaction as you open every present.

Imagine having a processing delay and having to come up with some genuine sounding nicety abut that thing you just opened that has you genuinely wondering if the person sending it has ever even met you.

Imagine getting distracted by the texture of the wrapping paper or the print while all the 'adults' look at you like you're a child. Because you are.

Imagine being routine driven and every routine you have going out the window.

Imagine being quite careful about who you interact with socialially because of energy and people taking it from you then being forced to interact with people that are so irrational that when you get it momentarily wrong will forever remember that moment and refer to it 'jokingly' for every year in the future til you die.

Imagine not understanding the social niceties of the 'last potato' and who should have it and taking people at face value when they say they don't want it.

That last one? That's actually the worst. Because actually, every Xmas day is full of those moments. Moments when there is unspoken tradition. Moments when there is unspoken hierarchy. Moments of unspoken in jokes.

And you know none of them.

This is why today, my husband and I spent most of the day alone playing on the Xbox. It might look and sound sad to you. But actually despite only spending two hours with my mother in law - I count this day as a win. A win because those two tense hours went well. Because I didn't accidentally say anything insulting or wrong. But don't worry. There's still tomorrow when she'll come for dinner. Plenty of time yet for the inevitable discussion to come up as to whether my husband needs helps in the kitchen (he doesn't, he's majorly territorial and wouldn't let me in there if I begged, and if you've ever seen an aspie with timing issues in the kitchen, let me tell you it's not a pretty sight), for her to comment on my weight and me to bite down on explaining the intracies of what EDS does to your body and how it is the gift that keeps on giving, time for me to accidentally misread when she wants to talk and when she doesn't and annoy her by making her miss the bit of the show she really wanted to watch, eat the wrong amount of food or offer food in the wrong order, and finally insult her by misreading her signals as wanting to go home, try and make the right noises to allow her to and watch her face fall as she thinks she's a burden I just want to be rid of.

The thing is, she's not a burden. That's the truly awful thing. I want the company. I'm looking forward to the company. All I'm saying is, it's a mine field. One I could use help with.

But it doesn't matter. It really doesn't. Because I'm an adult with autism and I'm invisible at Xmas.

Oh how I wish it were so.

Self; fractured

noreply@blogger.com (loulouk) — Thu, 17 Dec 2015 23:05:00 +0000

If I were to look in a cracked mirror I would see me.

All the things I used to be, the who I used to be, has gone. I am nothing like who I used to be.

I used to speed walk through life. I enjoyed nothing, savoured nothing. I achieved...nothing. Because achievement requires acknowledgement from those achieving. Without acknowledgement that achievement is naught but a scream in an echo chamber. I was screaming and no one heard.

Self is a complicated word. Four letters. Easy to remember, easy to write. Not so easy to think about. What do I think about when I think about self?

Echoes. Of what and who I used to be. A shell that walked and talked and answered as expected. An automaton who behaves exactly the way everyone expected. I am not that person any more.

So what am I now?

Now. Now is for legs that work until suddenly I can't lift them. Now is for queueing that takes all my strength suddenly and without warning. Now is for sight that suddenly blurs without warning. For walks, little walks, 200 metre walks that mean more than 8 miles used to. Now is for zipping around on my 125cc scooter and loving how it responds to my every movement. Steering with hips as much as with arms. I have incredibly bendy hips and riding my bike makes that a bonus. Now is for resting, before the storm that working will inflict. Now is for PIP tribunals and knowing I am less than 'normal' but so much more. It all depends on your criteria. Now is for appreciating what I have - a husband who is patient and who understands me, a few good friends who are likewise. Now is for posting 'is it just me' updates on Facebook and finding out its never just me. I am never alone. Now is for conversations about standing outside of showers even when we're in them and laughing about raj showers being the worst thing ever invented. Now is for grieving for a comrade fallen and acknowledging that there are things she didn't do, that were left undone that some day you will do. Now is for knowing you are broken but that 5 minutes of dripping sweat on the turbo trainer will one day be more. Now is for looking up, up at the clouds, up at the architecture, up at the sky and dreaming of the day you will one day touch it again. Now is for healing and trying, for physiotherapist appointments, splints and occupational therapy appointments, women's physio appointments and counselling appointments and post Aspergers diagnosis counselling appointment and appointments and appointments and appointments and appointments endless in their rolling around, necessitating visiting hospital and hospital and hospital and hospital and knowing every single one, every. single. one gets you closer to functioning as a human being again even if normal is a concept that got blown so far out of the water that somewhere you can hear Eris laughing. Now is for fighting. Fighting a body that wants to give in and give up. Fighting with glitter and pink and sparkle and love and everything good in the world. Now is for not taking all the tablets, now is for taking the right tablets. Now is for rehab and trying and fighting and grafting and grit. Now is for being a women and a warrior. Now is perfecting skills, old skills, lost skills. Now is for giggling into the night at the silliness and the beauty. Now is for remembering the beauty through the pain. Now is for embracing the pain and welcoming it and acknowledging it and understanding it before locking it away in a box and refusing to reopen it no matter the provocation. Now is for believing that I am the link, the link between the neuro typical world and the autistic world. The link that understands both. The link that says I am almost on the classical autism diagnosis pool but for my verbalisation. - no matter what the cost of that verbalisation. Now is for some days that are non verbal and some that are. Now is for believing in myself, believing in beauty and believing that there is a point to carrying on.

The future?

There isn't room. I am now.

Downing on the do-gooders

noreply@blogger.com (loulouk) — Sat, 28 Nov 2015 01:14:00 +0000

I've been watching a lot of Criminal Minds recently. It helps. It helps because Reid and Garcia, obviously (and if it's not obvious you've not been paying attention - yes I can read that fast if I want to - I just choose sometimes not to these days because burn out). But it's also helping me think about monsters. And about the concept of doing good.

When I was a child, I went to Sunday Mass. I hated it. It was in Latin and I didn't come from a background where Latin was needed much (unsurprisingly) so the entire service was incomprehensible wailing and murmuring. Sorry Catholics. But that's my takeaway from your religion.

So anyway. I went to Sunday Mass. And I read a version of the bible that had super scary pictures in it that was supposed to be suitable for children but had illustrations that put Bosch to shame. No me either. Understandably, I preferred Wind in the Willows. But my take away from all religion, somewhat amusingly and naively given recent events, was that religion was just a reason, a thing to make it okay to want to be good.

I can't count the times I was intentionally bad as a child on my fingers. I got into trouble a lot at home but that's a different story and one I won't tell as it's not my story, really. But I never intentionally misbehaved. I was just an aspie kid and a bit random, a bit focused, got a lot lost in what I was doing, and time was genuinely this wifty wafty wavy thing I didn't understand too much. But intentional? Nope. Not so much. In the grand scheme of things I was pretty well behaved, all things considered, terror will do that to a kid.

But religion as a motivator for said behaviour? Nope. I just never understood it. I guess I'm not too good at imagining stuff I can't see. And the whole God concept? Too tricky. Unquantifiable.

But wanting to be a good person? That I could grok. I knew good when I saw it and I wanted to be it. And watching Criminal Minds has made me think a lot about the concept of goodness. Goodness and evil. Monsters and those who fight them. And I come to realise that what motivates someone to want to fight monsters can be many things. It can be a personal interaction with a monster. It can be religion. It can be a need to protect. All of these are valid. All of these result in the same outcome - that good is done.

And I come to realise that good doesn't care what your motivator is. The person who benefits from the doing of good doesn't care a jot either. No one asks what religion their nurse follows. No one cares whether the man driving the fire engine is of God or not. No. All anyone cares about at the crossroads of good and fear, of good and evil, of good and chaos is; did you show up.

It seems to me that the proliferation of terrorism cells, groups etc is an indulgence. It's a reflection of a world where the intersection of good and evil has become so blurred we no longer can see eithers reflection. It seems as if somehow we lost sight of what 'bad' is - killing in the name of - and in counterbalance lost sight of what to be good is - a deep seated desire to put stuff that the majority accept is wrong, back to right.

I wonder if the Ten Commandments were created in a similar situation, a similar feeling time to the one we live in now. We have dressed death in so many flags, in so many religions, in so many races and ethnic creeds that I no longer understand whether it is a human underneath the dress or a scarecrow. All I know is this.

Killing in the name of anything at all is still killing. And killing offensively is murder. I don't care who it is you're killing, that's a life you're taking. I get it's grey. I do understand that. But who made it grey? Did you?

Trippin' on the XX

noreply@blogger.com (loulouk) — Fri, 27 Nov 2015 01:32:00 +0000

Title in part thanks to Jamie XX who is my new jam.

It's a bit crap, being the 1% of the population of female aspies. But this isn't about this. This is about the awesome. Because there is and I need to remember that. I joke about my superpowers - but sometimes it's not a joke. I can do some stuff other people can't do. Here's some of them.

I can't imagine monsters. My nightmares consist only what I have seen and experienced. Copper cisterns don't grow legs and chase me down the street - a thing that apparently my husband had nightmares about. I don't. My getting lost dreams consist of getting lost only in somewhere I have been. My faceless monster dreams always have faces. I didn't get scared as a kid of things I had imagined because I imagined nothing. And I'm super grateful for that. This has a downside - I can't imagine what something will feel like or be until I am in it, feeling it and experiencing it. But this too has an upside - I don't ever look at a hill and don't climb it on my bike (when I could ride), or not attempt a 100km ride because I know it will hurt. I don't know it will hurt until I've committed. And once you're committed? Well it's too late to quit out, isn't it.

I have a photographic memory. Not long term, only short term. But I can put a book down and retread the last page from memory. I can close my eyes and resee a spreadsheet page in its entirety. I didn't know I could do this really until very recently so it's only come in handy for comparing stats on item upgrades in role playing games. I wish I'd known I could do it when I worked with spreadsheets. But it's never too late to use an awesome superpower and this is one of mine. When I'm well I can also recall word for word conversations that have been had up to 6 months ago - again of varying usefulness - ask my husband about that ;0) - but nevertheless, it's a thing that I can do and it comes in handy sometimes. Like remembering exactly what was or wasn't said during a PIP assessment.

I see things differently. I'm not just talking about processing either. What I take away from a scene is undoubtedly different to most others. I see detail. I spot the other things people miss. I remember vividly those details and take them with me. This means I take photos differently - I'm looking to highlight something I've seen in those photos that others may have missed. It lends itself to to different joy - I gain so much joy from watching snowflakes fall, from rain falling through a steer lamps glow, from the ever changing moving sweeping murmurations as they scatter and form above my head.

I need to be outside. Outside and away and ideally up high. This need has given me some of the most beautiful moments of my life. Sunrises and sunsets in silence. Deer and red squirrels and badgers. I've seen birds of prey swooping and hunting from the side of a hill that put me at eye height at the hunt unrolled before my eyes. I've been inside clouds and above them. I have seen so many beautiful things.

Because of my visual memory I never forget a single one of those moments. I don't need to consciously snapshot. Every moss covered boulder I've stood on to watch a waterfall crash to the ground. Every mosaic I've ever stood on. Every painting I've ever really properly looked at. All instantly recalled like magic for me to resee whenever I need to.

Animas like me. This makes wildlife parks a joy. But it also means a vet calls me a hamster whisperer, able to calm frightened and panicking animas. I can bring peace and calm because I understand the anxiety so acutely - a thing that perhaps could be a curse when it comes to humans, is only a gift when it comes to animals.

I have a fantastic aspie sixth sense. It has saved my behind on numerous occasions. I can't tell you why we shouldn't be in the middle of that crowd right now. I can't tell you why I'm stood on this bench while the crowd crushes around me. I can't tell you why we shouldn't walk down that street that we've walked down every night for the last year without incident. I only know we shouldn't and that I've been right enough times to know I should always always listen.

I have sensory overload. But I also have heightened senses. This means I am an epic spinner of yarn. I can close my eyes and feel the way the wheel works, feel just the right amount of twist that goes into the fluff. I am also an intuitive person when it comes to colour. I've never studied either. Never been taught either. And yet I just know when something will work and when it won't.

I am a fantastic driver. The healthy avoidance of others in my space translates to someone who always always knows where everyone else is, what they think they're going to do next and what they're actually going to next. I profile everyone, profile everything, threat assessing, yes, but it makes me hyper aware of situations unraveling and when I should be nowhere near that happening.

Being aspie is hard. Hard work. The world is very hard for us to be in. But it really does come with some perks and these are just a few of mine.

Girl, interrupted

noreply@blogger.com (loulouk) — Mon, 23 Nov 2015 00:08:00 +0000

The quietness of rage started during the pre-assessment process for ASD. 'You do have friends don't you?'

It's such an innocent question. On the face of it. I mean who the hell doesn't have friends in the 21st century? Who doesn't have at least 100 of them on Facebook, a few thousand followers on Twitter, a few more on Instagram? In such a hyper connected world where we share the minutiae of every living moment, how could we possibly not be positively dripping in friends?

At that moment, I laughed. It was bitter. It echoed emptily, as emptily as my life. I had no friends. Not a single one. No one to go for coffee with. No one to sit and natter with. No one to play board games with.

No one. Zero. It was the most hurtful moment of the entire process. A light shone on an empty world and an empty life. It wasn't to be the last. As the questions progressed I realised that second by second, every thing I thought I knew about my life was a joke. A fallacy. A holographic image destroyed progressively by a man I'd never met before and would never see again.

This is what the diagnostic process of ASD is. But if you're a girl, it's so so much worse. None of the questions speak to you. None of them resonate. All of them have to be thought of side ways. Take the collecting question. 'Do you collect thing such as stamps, insects or toy cars?' they asked me. I bit my tongue on the retort that I was a 37 year old woman. I'm good like that. Mustn't make a scene don't you know.

I just asked if he meant my collection of OPI nail varnish I never wore or the collection of MAC pigments that, equally, I never wore. Point made. Box ticked. On we go.

I left the pre-assessment feeling erased and empty. As if somehow, being autistic wasn't alienating enough, the professors who'd put this thing together had also erased my gender. I am woman hear me roar? More like I am woman, I'm so sorry. I've broken you're empathy quotient, your autistic quotient, I'm so sorry.

In the end I was diagnosed by a woman. A woman who wore as many rings on her fingers to twist and fiddle with as I did. What you thought they were for decoration? You idiot. No they're not. I was diagnosed as 45/50 - it couldn't have been more clear cut if it'd tried. No borderline case here, oh no. Definitely autistic. And yet the stupid kept on coming. 'You can't be autistic!!!' rang the cry. Because I his it so well? Undoubtedly. Because the hiding nearly cost me my sanity? Oh definitely. You will never know. There aren't words.

Instead there are words for what listening to other autistic women's experiences are. Oh yes there are. From family who refuse to accept it (it's genetic is a truth too hard to accept) to 'oh no you can't possibly be, you're nothing like my husband/nephew/brother/male friend'. All of if ridiculous. All of it invalidating. All of it fuelled by a perception of autism which is male dominated.

But thems ain't the real doozies. The real doozies are the letters written to occupational therapy asking if an employee has read a list of autistic symptoms and decided to emulate them because the employee can't do some tasks. The real doozies are the ladies told that they just have anxiety and should cease and desist from spending any more time with autistic people because it is 'fuelling their delusion that they have autism' - women who go on to be diagnosed as autistic.

If you want to know the definition of invalidation as a human being who struggles, who is terrified, try those. They are truths. I can't point you in those women's directions. They are otherwise intelligent, bright, shining stars of women who have been treated in a way which can only be described with one word.

Victimisation.

And it has got to stop. This ridiculous fallacy that autism is male has got to stop. This ridiculous misrepresentation of what autism is in women has got to stop. This invalidation of who we are, how we are, and how we see the wider world has got to stop. We are an intelligent society. We pride ourselves on the fact that we accept gay marriage and are not bigots, that we don't discriminate, that we don't hate.

You are hating on us. You are erasing us. You are prejudice in your diagnostic questions and you are doing real harm to the women who are autistic. Your refusal to accept that we present differently
, that we look different, that we sound different to our male counterparts is removing help and support from us that we desperately need.

I don't know what the answer is but I will find it. Because this is removing the capacity to under stand, to be understood from so many women. And it wouldn't be happening if it were happening to men. I am tired of hearing this tales of woe and I am tired of being erased.

I am a woman. And I am autistic. And you're not helping.

On being fat

noreply@blogger.com (loulouk) — Wed, 18 Nov 2015 00:47:00 +0000

I've just read the fat geek doctor meme doing the rounds.

It struck me how lucky I am. Lucky to have found a specialist who looked past the fat.

I told him I'd lose 3 dress sizes. He asked me to continue to lose the weight. It's such a small thing that. Continue to. Keep up the good work. An encouragement not a condemnation. An acknowledgment that perhaps most people would put weight on if repeated unexplained injuries made you go from riding 100km to not riding at all.

I told him my knee was dislocating. I saw him open his mouth. I told him I'd had a sprained elbow since February and the fingers on my right hand kept dislocating. He shut it again. He asked me do all the usual bendy tests. He scored me 8/9. He didn't say gosh you're bendy for a fat girl. Others have. Oh yes, they have.

I told him sometimes the pain made me cry when I woke up first thing in the morning. He didn't tell me to grow a backbone. He didn't tell me it was the depression. Others have. He said I needed adequate pain management.

I told him I wanted to be strong again. I wanted my body back. He referred me to physio. He told me no surgeries. I told him no way. So he referred me to a rheumatology physiotherapist. A specialist in what I have. He didn't tell me to go away and work this out on my own. Others have.

The physiotherapist has listened too. Listened and listened. We have pulled back on the bad weeks, adjusted things when the pain has been too much. She has given me the power to choose what I do and do not do. She has watched as I have fought my bodies bad coordination and she has waited as I have waited, for the black and white dots dancing across my vision to go away every time I've got up from doing the bed based exercises. She had listened to my love of pedalling and persisted in getting me back on my bike. She has accepted that walking is not as easy as riding and let me choose riding as my preferred mode of exercise. She has geeked about Harry Potter with me and listened as I tried to articulate a childish understanding of grief for a friend. She has never touched me unless absolutely necessary, she has never forced eye contact. She has maintained a bubble of personal space around me at all times and been patient when I have needed to process what she has asked of me.

Because of these two peoples ability to lsiten, to encourage, to persist in building trust, I am winning the battle with my body. My stomach regularly feels like someone is using pork claws on it. I am hungry sometimes to the point of going crazy. I am sometimes so miserable and in pain that I just want it to stop, please please stop. Sometimes my back spasms and the pain overrides my entire bodies control over everything. Sometimes my knee dislocates, briefly, and I yelp at the pain.

Sometimes it feels like nothing has changed. But mostly it feels like everything has changed because two people saw past the fat and saw the person inside it.

If you want to treat obesity, treat the person, not the fat.

The curious incident of the woman in casualty

noreply@blogger.com (loulouk) — Tue, 17 Nov 2015 00:42:00 +0000

(This is not my story. I am very close to the story. However, names have been changed to protect privacy. She deserves to have that intact if nothing else.)

5 years ago, in a County far far away, a woman lay in a bed in casualty in the A & E department of a very well run, well respected hospital. I know the latter of these things to be true because I know a nurse training partially at this hospital. She has nothing but good to say about it. Please bear that in mind during the following.

The woman was white, middle aged, reasonably middle class. Well educated through not in academic terms. Smarter than your average bear in every sense of the word. Well cultured and well read. Well spoken and well mannered.

She had also just split her scalp from ear to ear.

This woman rode her bike, and she rode it every single day. She has no car, the bicycle was her primary mode of transport. She wasn't wearing a helmet. She came down the same hill she'd turned down every single day for the preceding 3 years at exactly the same speed she always did. What had not been there every preceding day was mud on the road from construction traffic.

She skidded. She lost control of the bike. She hit a metal lamppost head on, at speed and then fell and knocked her shin and head on the kerb.

She called the ambulance herself. A passerby stopped, asked if she was alright. 'I'm fine' she said 'just a little knock' as she felt the blood pouring down her face and knew that this was not the truth. The ambulance arrived. She was loaded up. She was asked where her helmet was and answered that she wasn't wearing one.

In the following four hours in which it took for her to be seen by a specialist, she was asked again if she was wearing a helmet. She answered again that she was not. She was asked twice if she wanted them to call anyone. She answered twice that she did not. She said she was fine.

She wasn't. The specialist was told she was wearing a helmet. No MRI was done at that time. She was stapled together, all across her head and let go with a shower cap. Why the shower cap you ask? 'To cover your head dear, it's quite a mess'.

The staples drifted. She healed from the top down. They had to burn away some of the cells that were growing in the wrong place. She wasn't asked if she wanted a local anaesthetic. If she had been she'd have simply answered 'I'm fine'.

She realised shortly after that she wasn't fine. She couldn't walk properly, her balance had gone. She had what was suspected originally as macular degeneration. It turned out to not be degenerative. So she just has a permanent blind spot in the centre of her field of vision. Her fingers on her left hand don't work properly - she has no grip. Her eyebrow underneath which nerves were severed doesn't move. It's the eyebrow above the eye with the not macular degeneration. Her personality changed - though thankfully only temporarily and she found herself becoming irrationally angry for no reason at all. She lost her temper quickly and randomly and felt like she had no control. She couldn't remember numbers and kept forgetting words and names. She had a huge scar on her upper thigh from hitting the kerb which should have been stitched and would have been - had anyone checked anywhere else on her body for injuries except her head.

The MRI almost a year later explained a lot of these things. But she was offered no help and no counselling. No advice. No numbers for charities who help with brain injuries and those recovering from them.

When she was asked, she just said 'I'm fine'.

Her lasting impression of all of this is one of isolation, helplessness and frustration. She was claiming DLA to help with her problems. The final final insult to this women was the withdrawal of all help 6 months before she was due to retire - she was scheduled to move to PIP and was refused. The fact that she cannot grip with her left hand, experienced personality changes as a result of a brain injury, sight impairment and finally severe balance problems weren't enough to qualify her.

When I asked her why she didn't appeal, she said 'oh it was fine, it was only 6 months - the Job Centre were lovely about it and were very understanding when I said I'd timed how long I could stand for and how long I could sit for'.

Are you laughing yet? Isn't this hilariously funny. And gosh darn, but it can't possibly be true. Because that would be ridiculous, wouldn't it.

Every word is true as it was told to me 4 weeks ago. Yes. You may have guessed who this is that I'm talking about and she only told me this story 4 weeks ago.

This person, we are reasonably sure, is an undiagnosed autistic. And suddenly, to some of you, this will all make sense. Don't make a fuss. Don't be a problem. Don't draw attention. If you think this is extreme I am telling you it is not as someone who has literally relocated their dislocated knee 6 times rather than go anywhere near an A & E department. You have no idea, literally NO idea how terrifying A & E is to an autistic person, high functioning or not. My uncle has learned to sew his own sutures rather than go to hospital. This almost pathological aversion to the noise, light, uncontrollable chaos and people touching you without warning is entirely normal to me. I don't think we are alone.

No one asked this woman if her personality change was a result of the accident. No one asked her why she didn't want to call someone when she was all alone and terrified in that A & E. No one flagged her behaviour as worrying. I don't find that worrying. I find terrifying.

So I am asking you to do something for me. I am asking you to tell me whether you, if you work in the NHS, or if you know someone who does to ask them, I am asking you to please tell me what autism training you receive. Because I cannot in all good conscience sit on this story. I can't ignore it. I can't pretend it hasn't happened. It has. And it must not be allowed to happen again. The idea of that woman dying and no one knowing, no one being there to hold her hand (if she'd allow that which is debatable) because she said she was fine when every single last detail of the scene in front of those people in that A & E screamed she wasn't - I can't bear it. And it could have happened. So so easily. Too easily. And it's not fair. It's not fair on the nurses who if they ever read this will discover that so very nearly fucked up catastrophically and it's not fair on this woman. And it's not fair on her friends and family - even if she has so very few of each of those categories.

Don't get me started on the benefits side. That's so broken I can't do anything about it. I don't think anyone can. So I've decided to focus on what I can affect. Please help me do so.

Writing it out of your soul

noreply@blogger.com (loulouk) — Thu, 20 Aug 2015 01:39:00 +0000

The following is written so that what comes after can come. I keep waiting for the after to arrive and it isn't, I suspect because this is bottlenecking it. I don't really want to talk about it, this is me being utterly selfish. I'm going to write some hard shit down and I'm going to walk away a little lighter. You might walk away a little heavier. I'm sorry. You have been warned.

You know it's chronic before they tell you it's so. Of course you do. You've lived with it for 5 years or so, the 'no this isn't quite right' turning into 'no this really isn't right' turning into 'lets just try this and see how you do' which then becomes a merry-go-round of something like 8 different specialists in 5 different disciplines until you listen to that friend who's being going 'you sound a lot like me sweetie' and you go to your doctor who you've now got an ace relationship and say the magic words 'my friend has this and it's got me thinking'.

For too many people that conversation goes badly. Doctors don't apparently like their patients comparing notes. I understand why, I understand that if it clops and canters it's a horse and not a zebra or whatever that silly saying is. I understand we've all turned into neurotic Googlers. But as someone who's gone way way way past neurotic Googling into avoiding Google completely because it tells you futures you can't deal with yet, I can honestly tell you I am grateful to my doctor. I almost hero worship her. She didn't refer me to rheumatology as fast as she should have done, no, but she was ensuring I satisfied some diagnostic criteria in doing so. As a result last week I was diagnosed with a chronic condition in 20 minutes. It was almost anti-climatic after 5 years of searching for the why's, the how's, the explanation that would satisfy my engineer brain and allow me to move on.

Except, as much as the NHS might like you to believe that diagnosis is the end of the story, it isn't. If only. Then you get sucked into the cycle. Every person with chronic illness knows it. Hell, I've already been through it twice in the past 18 months, I feel like the worlds expert. First there's relief, then there's anger, then there's sadness, and grief, (and fear, no one ever talks about the fear but it's there) and finally the quiet of acceptance.

Except I'm high functioning autistic and I've already been at least once around that cycle already since last Thursday.

And this is where the NHS starts to fall down. I've been offered no help with getting my head around this quite major thing, none at all. I'll be referred to physios, of course, who'll put me through seven levels of pain I didn't know I was capable of and I shant care a bit because at least it will be seven levels of pain it's okay for me to be in, unlike the last 3 or 4 lots of physio (I've been to physio a lot, it really should have flagged something up) which did more damage than good because I was undiagnosed. Not their fault. But then who's fault?

It will be left to my ASD counsellor no doubt to unpack how I feel about being diagnosed with a lifelong incurable condition which few people seem to know about, little research has been done, and which treatment extends to 'take enough painkillers to not cry in pain every morning/time you move and work as hard as you can to build muscles to keep your joints in place' which is useful and works but ignores comprehensively the other symptoms, which are not imaginary as they constitute minor criteria for a diagnosis. But that's no ones fault, is it, that somehow the things which proved I had this thing are no longer up for discussion when we talk about how we treat this thing.

Then there's the revelations that somehow all the not Googling but talking to friends had missed. 'How's your sleep?' asked the Specialist. I laughed. Out loud. Proper authentic knee jerk LOL'd. I tend to comment the one morning I wake up feeling better than when I went to sleep it happens so rarely. It's been happening so long I'd assumed no one slept well. I'd forgotten I ever did that's for sure. 'How's your neck?' A week later I am forced to admit I may have not been entirely honest in my answer that it was a bit sore, having forgotten entirely that occasionally it fails to hold my head up, and that it was, once, not so solid to the touch it felt like a brick, nor so painful to be touched it made me yelp.

Opiates don't kill all pain. I didn't know that before all this started either. I don't feel migraines any more. I don't cry with pain quite so much in the morning. But the bone and joint pain persists, it seems, through everything the pharmacist can throw at it. Heat is the only thing that takes it away but baths make my heart race and me fall down in a muscle wobbled heap so they're kind of a no no these days. Dry heat it is. If only houses came with saunas as regularly as they came with baths.

So much of this I've only learned recently. So much of it I've learned through trial and error. There are forums I should go and read, charity webpages which contain helpful sources of information and research. I should read them. I need to get over the idea I am not permitted to first. The problem is, when you've been tested for suspected MS and then when it wasn't that suspected Lupus, is that after a while, you almost believe completely that they're never ever going to find out what it is. So even when friends tell you that you even look facially like their friends with this thing, you still don't dare to believe you might have that thing. You join Facebook groups relating to the thing, so much of what's posted resonates with you, but you feel like a complete fraud for even joining the groups because you're not diagnosed.

It takes a while for it to sink in that you're no longer a fraud. Even longer to allow yourself to start reading all the help and support that's aimed at 'people like you' because inherent in the reading of it is the acknowledgment that you are 'people like that'.

I wish there was some kind of post diagnosis website the NHS had to send people to where all this was explained. Where you were reassured your feelings were normal. Where you were told what to expect, how you will feel, how you will want to stop feeling. It's such a simple thing, knowing someone has been on this road before you, way before you, and they are still on the road, they haven't fallen off it, and you wont either. The assurance of not alone. The echoes of someone else's battles. The sound of help at hand should you look like your path is heading towards a cliff.

I suppose then, that at the end of all this explaining and self pity, of this soreness and exasperation is a plea. If you attend any kind of NHS focus group thingy, or whatever, could you suggest it? Because I think the time when I may be able to attend those groups myself as a functioning disabled person may be quite some way off and it'd make me feel better to know some good came out of this stage of the cycle. This stage that doesn't have a name by the looks, though I suspect fear would be as good as label as any.

Cheers.

Dancing in the rain

noreply@blogger.com (loulouk) — Tue, 11 Aug 2015 18:36:00 +0000

[This weekend just gone, I attended 9 Worlds London Geekfest for the third time. This is a review, except it isn't. But it is. Just bear with me. Pre-emptive thanks go to Emma Newman for her Fear and Writing workshop which led to three days of long hard looking at myself and led to the following.]

'So is that your thing then? Writing?' she said. The she being an elf masquerading as a person, dressed in jade green and purple tights, red hair, short and bouncing wildly with the emphatic movements of her head.

'Well when you're sort of passingly good at everything you pick up and try, at some point you've got to kind of choose, and it made as much sense as any to choose something I love to do' I replied. 'I love to make words dance and sing across the page, love to help people see things differently, to help them see things the way I see them, which isn't always entirely normal'. Or at least that's as close an approximation as I remember.

Before this she'd appeared from nowhere to ask where the toilets were. After that we'd discussed boyfriends and it transpired that she was actually me 15 years ago, close enough to make me momentarily question whether actually she was real at all or whether my subconscious was laughing at me and I was dreaming.

She asked for advice. I told her everything I wish I'd known before but am proud to wear the battle scars in the process of learning. And then we parted ways, never to cross paths again.

This is what 9 Worlds is.

We sat at the front of the Bifrost cabaret, after bumping into someone from a previous life and this causing much head breaking, but also before I'd realised that of course he would be here taking photos because no one else can take pictures of elves quite like he can. A person in a green dress welcomed us all, paced with the kinetic energy of a being far larger than them, and proceeded to sing about Gamergate to the Portal Still Alive song. I felt less alone, less sore and less invisible instantly, because the song was about being invisible and I am. In game space I am. I am eternally grateful that I never picked up the book about cute fluffy animals that she read so eloquently from. But I am also grateful that even when as a child I thought I was alone (books, cute fluffy animals), I wasn't.

This is what 9 Worlds is.

'Let's not discriminate against those with a lack of imagination' said the only female panellist of the Books vs Comics vs Games vs Film & TV: FIGHT panel (the mod was female too; this isn't about gender, but as an identifier without breaking flow to check the programme for names it will do). She laughed. We all laughed. I laughed. But I also quietly said thank you to her under my breath for noticing when Pete Newman (who is lovely) made a comment about reading books being a collaboration. I briefly felt alone. As if I were the only person in the entire world who doesn't imagine anything when reading. I remembered the moment when I discovered I was a freak girl who read 50 fiction books a year but who imagined the faces of precisely none of the characters I'd fallen in love with. I remembered the grief I felt, briefly, that I would never have the same reading experience even as my husband, never mind everyone else. I don't know if the panellist who made the comment saw my face; I was looking down at my knitting, which is of course there for the very purpose of being looked down at because Eye Contact, but nevertheless it was appreciated. I felt less alone.

This is what 9 Worlds is.

'What do I do with this?' said my friend brandishing a skein of yarn. It turned out to be special yarn, in that it was dyed in order to expressly represent intervals, I think in an aural interval and I vaguely remember Blink being mentioned but I'm not sure. 'Oh that needs to be knitted with like this' I said and fell into a long chat about wool, knitting, crafting in general, geekery and friendship affirming. The previous day I'd sat and taught someone to drop spindle to spin their own yarn, and had found words I didn't know I had which enabled me to explain in an orderly and easily understandable fashion what we were trying to achieve, how simple the thing actually was we were trying to achieve before demonstrating it and then leaving her to do the working out bit herself. I spent many panels knitting while next to me someone embroidered and behind me others knitted also. For me it enables me to avoid eye contact. For others it is possibly simply something to do with their hands. Who knows, who cares, it doesn't matter. We were simply left alone to get on with our crafting with nary a raised eyebrow to be seen.

This is what 9 Worlds is.

'I'm really glad you were in this panel because I nearly left at the point where everyone was asked to self identify gender and sexuality, but the fact that you are you helped me understand that I could learn something and so I stayed' I said. This wasn't met with confusion, nor backing away which I was quite worried it would be, having sat and stewed for at least 10 minutes before the panel had even ended about whether I could be brave enough to go and talk to a proper real-life author about something that I felt quite strongly about, even though I had a sneaking suspicion those feelings might be at least recognised by the recipient even if not directly felt by them. What followed was a discussion on gender and sexuality fluidity, the need or lack thereof of self-badging and labels, the acknowledgement from both of us that actually they could be quite useful but also that LGBTQ+ discussions were still being defined by Tatchell's Stonewall era and that at the point where my mother has managed to move on with her thinking, maybe we all should too. My mother who never had a problem with anyone I brought home to meet her, nail varnish and eyeliner wearing or no. My mother who had absolutely no problem with my formative years being spent on a podium in gay clubs. That kind of mother. I came away knowing I'd been heard and understood, also knowing I'd wittered a wee bit too long, but also knowing it wouldn't be held against me.

This is what 9 Worlds is.

'Even my elbows hurt' I said on Sunday after someone had kindly enquired how I felt after unwisely becoming overenthusiastic on the dancefloor at the post cabaret geekrave the night before. I missed panels I wanted to go to - Writing the Other being one of many. I was vaguely aware people were missing panels due to them being full. I was also aware I was privileged in my disability, which meant I was allowed to leave queuing to the last five minutes because someone was kind enough to think to let us broken bods in first. I didn't use any of the Quiet Rooms because I sat outside instead. But they were there should I have needed them, which is probably why I didn't. I have nothing bad to say about Access at all, and in fact quite a lot of good. Signage was excellent; the non-gendered toilets were refreshing; the indicators of urinals and sanitary bins useful; and the thought which had gone into not just dumping all the priority seating at the front, utterly fantastic. I only noticed it on the last day because I was assuming they'd all be at the front, but as someone who find it incredibly anxiety dampening to have her partner next to her during panels when she's feeling a bit wobbly, having priority seats on ends means I can do this without him tying up a priority seat too. I am more grateful than I can express for the hard work, focus, thought and kindness which has been shown by the Access team this weekend. A prevailing memory for me will be a BSL interpreter in costume, sat at the front of the cabaret on the floor, happily signing the lyrics to the Gamergate song.

This is what 9 Worlds is.

In my imagination, 9 Worlds is a Venn diagram. On each world is the representation of a group of people who for whatever reason find mainstream cons too much or not enough. There is a world for sexuality, a world for disability, a world for people of colour, a world for gender, a world for the niches inside the niches, a world for none of the prior.

9 Worlds allows all of us to come together to play nicely. We can each make a choice. We can either stay on our world inside our bubble, or venture across the rainbow, be that into a new track of fandom or into a new room full of new people who might or might not accept us for we are. We can choose to embrace peoples confusion or lack of understanding and take an opportunity to educate. We can choose to be visibly something, or visibly nothing. We can choose to badge ourselves "other" or meld into the masses of other, making new colours and new rainbows. We can choose to accept heartfelt apologies and send hugs back, we can choose to be hurt and grumpy because someone kicked our stick out from under us. We can choose to laugh about a lack of imagination or we can choose to grieve what we now know we miss. We can choose to pull together, wrap our comrades in nerdery in a warm, fluffy, rainbow in every sense embrace or we can choose to divide, to section off, to step outside and away.

I am a high functioning Autistic, half hearing loss in one ear, hypermobile spontaneously dislocating, muscle spasming, heart rate randomly fluctuating person who until last week was in the midst of the longest depressive episode of my entire life. Some mornings I can't dress myself, some days I forget to feed myself, most days I am in pain and wear a patch that tries to help with that. I can choose. I am choosing. I am choosing all of you. Every single person who went to 9 Worlds is someone I want to know, I want in my tribe. The educated, the soon to be educated. The broken and the able. The straight hims and the genderqueer asexual hers. I want to be in your tribe and I want you to want me in yours. 9 Worlds is the most forward thinking, intellectual, emotionally intelligent, comfortable-in-its-own-skin con I have ever had the privilege to attend. It can be better. It will be better. It is every single one of the attendees' jobs to make it better. We all have responsibility because we are all tribe.

I'll be your 7 of 9, if you'll be my Data. All my love and thanks,

Louise

Autism awareness week

noreply@blogger.com (loulouk) — Wed, 01 Apr 2015 21:32:00 +0000

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'.

No.

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.

What I mean when I say I'm autistic

noreply@blogger.com (loulouk) — Sun, 02 Nov 2014 15:57:00 +0000

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.

Who deserves our care?

noreply@blogger.com (loulouk) — Thu, 30 Oct 2014 18:45:00 +0000

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.