A Modern Day Christmas Fairytale

Once upon a car journey back from the City of Glass, somewhere south of the Great Lakes, Gorgeous was pondering. What could Sexy buy her for Christmas?

Sexy earned a meagre living rescuing helpless motorists from their folly. It was hard work occasionally appreciated by the few and he had little money to spare. Had this been an old fashioned fairy tale, his armour would surely be as rusted and worn as the faded orange high vis jacket worn by knights of the road today. In all weathers, fair or foul, did the gallant Sexy travail from A-roads to B and motorway. He pulled cars from damp ditches, unfroze locks, jump started flat batteries, changed wheels, and cursed the top spec German motors for their shite electrics.

He missed the days when he stood tall for Queen and country, driving and commanding tanks in distant lands. Yet he loved his job, for he enjoyed nothing more than getting people out of fixes and seeing them safely home.

And this is how he met Gorgeous.

Gorgeous, although now five minutes past her youthful best, still had quite a bit going for her. She was intelligent, a student of words and the arts yet also worked as a chef at the Purple Palace. Leaving work one night, she found her beautiful minibus to have a flat tyre. So she did what all modern day, right thinking people do. She called out breakdown recovery. Sexy did not laugh at the corroded bodywork, nor ‘help’ graffitied on the back doors. It was a heap but neither of them saw the rusty bucket the blue transit van really was, but a means to an end: a lifestyle option for someone who liked outdoors, dogs and muddy boots.

On the way home, Gorgeous and Sexy chatted about everything that mattered, from internet dating to life as a mature student, army life and small villages in the heart of the National Forest.

Gorgeous quite liked the look of Sexy, so hid her email address on his job sheet. Thus a simple lift and shift job grew to romance and the ultimate challenge.
Although many suitors had come her way, some princes from foreign lands, others humble tradesmen, none could give Gorgeous what she most desired. Not one of them could conquer the greatest challenge of all for none were worthy.

And that is how it came, on the journey back from the City of Glass, that Gorgeous laid out her challenge.

On a scrap of paper, she wrote:
Herein lies my wish for Christmas.
No-one has ever given me the key to their heart.
I would like a key to your house,
Which is the key to your heart.
But only if you take back the one you gave to Ex.
That way I will know your sincerity,
For it is important to know you have
No keys to the heart of another
Nor they to you.
And in this way
You will win the key to my own heart
And it will be yours to keep for as long as love lives between us.

Chapter two

It was Christmas day and Gorgeous drove the miles from her house to see Sexy and discover whether or not he had taken up the challenge. Would he really be the brave one, strong enough to accept and fulfil the wish that she held so dear?

The day was long and full of seasonal merriment. Sexy held court to guests and made welcome all who came to his door. So flowed much wine and all were in good spirits. All, that is, except Gorgeous, who wound anxiety beneath her benevolent smile as gift after gift was unwrapped.

One by one, the guests either left or retired to bed. Gorgeous was still waiting. As Christmas Day came to an end, Sexy took the hands of Gorgeous in his, pressing a small box into her trembling hands. For fear of her eyes betraying her heart, Gorgeous looked away from Sexy as she opened the fragile wrapping. Inside the box was indeed the key she had asked for. Bright rainbow coloured, beautiful and on a small chain. She remembered her note: But only if you take back the one you gave to Ex.

‘Did you do it?’ she asked. ‘Did you take back the other one?’

Sexy looked away. ‘Not yet,’ he replied, ‘but I will, I promise.’

Snow began to fall.

Gorgeous held her head up as she wanted Sexy to see the tears shining brightly in her eyes as she gave the key back.

image courtesy of Rock.love

Tribute to the (as yet unknown) suicide victim

..... apparently, somebody chucked themselves under a train between Derby and Long Eaton this afternoon. Rest now, my friend, whoever you were. Rest. I wish you had recognised the one person to talk to, to remind you that the black dog passes, that night is followed by morning. That spring follows winter. Rest in peace, sweet person. No more will you hurt; never again will you smell the dawn of the brand new day that brings hope and, with it, life, in all of its fragrant trauma. For in everything, we learn and grow. Our tears make seedlings of new life and adventure. In life we can neither say never or forever, but in death there is no uncertainty. It is forever. In the certainty of death, there will never be foolish optimism.

Fashion, as I see it

We had to write 400 words in a seminar on the subject of fashion as we see it. I added a bit to it and have published it below.

----------------------------------

Fashion, as I see it, is a casual uniform that binds like minds to one another. It is all about conformity, grasping for identity, whether it be with peers, pop idols or other influential figure.

We all have a 'look'. Mine is scruffy. Just glancing around the seminar room where I currently sit, there are girls in leggings, similar to those I wore in the late 80s and early 90s. In those days, it was popular to wear them with gaudy bat wing sleeve pullovers. Now, they seem to be worn with close fitting, sleeveless tops beneath something that looks like the lovechild of Slashed Vest and Table Cloth. If I wore one of those, I would probably be constantly snared by seat backs or other peoples' luggage on the train. My laptop back pack would shred what was left.

The lads seem to either wear jeans that are too tight and scream infertility treatment ten years hence or, worse, falling down over their arses, showing an expanse of boxer shorts. I'm torn between a furious urge to scream, 'Pull your fucking trousers up!' or dacking the scruffy bastards. If they are so intent on showing their pants have Calvin Klein embroidered in to the elastic, why not go the whole hog? The only name labels we had as kids were the ones from Cash’s. I remind myself of my gran who, back in the 60s, would often go off on a rant when men started growing really long hair and pulling it back into a pony tail. She would end it with,

‘It makes me want to get a big pair of scissors, go behind ‘em, grab hold of it and cut it off,’ she’d say with a fairly frightening sweep of hand with her air cutters.

And what is the matter with good, fresh air? Have these youngsters balded prematurely and feel they need to walk round with their hoods up? Has central heating turned younger generations permanently nesh? How long will it be before stocking masks, once essential accessories for stars of Police 5 are all the go?
'It's stifling,' I want to tell them. 'Liberate your heads and free your minds. Give it freedom to turn around and take in the morning sky, the starry nights, the sights and sounds of the city. Head coverings, from brollies to beanies are bad for the soul. They shut life itself out.'

I look at what I'm wearing: fairly clean jeans and the sleeves of my Sheffield Hallam University sweatshirt rolled to the elbow. It now has a raw edged collar because the hood is in the duster draw at home. My most expensive item is my boots. El Natura Lista. Brown ankle boots bought from Jones the Bootmaker at the beginning of last week for £75 and that was after the '£20 off all boots' discount had been taken into account. Dyed with natural vegetable colouring and with recycled rubber soles. Flatties. Not like the ankle breaking, killer heels that a lot of the young female students wear on a two for one drinks night up West Street.

I've gone through a fashion or two in my 48 years but have always preferred the durable, practical and comfortable as is common among people, like myself, on the autism spectrum. Maybe that look, in itself is a fashion statement.

Photograph copywrite www.orble.com

Clockwork or All Wound Up, by Philip Pullman

If you missed this book the first time around, it is well worth taking a look.

The preface sets a Christmas card like scene of children sitting by Grandfather’s feet, illuminated by the glow of warm log fire-light. He tells the story, one imagines, against the howling wind and lashing rain of a cold winter night. Pullman says of some stories, ‘Once you’ve wound them up, nothing will stop them; they move forwards till they reach their destined end, and no matter how much the characters would like to change their fate, they can’t.’

Ignoring the aimed at children format, this dark fairy tale is filled with suspense and analogy. The Corgi Yearling edition I picked up from Amazon is illustrated by Peter Bailey’s eerie pencil drawings. This is where Oscar Wilde’s Happy Prince meets the Brothers Grimm and Pinocchio, with some Tales of the Unexpected thrown in. The sidelines combine laugh out loud funny with searing wisdom aimed at the adult reading to the child.

This story is one to be read aloud, under blankets, on the sofa, by Grandpa on a cold night. Just not at bedtime.

Streeet Poem for Parents

Wonderful joy!
An hallelujah moment of
definable bliss.
To go to the toilet
for a p**s
and leave the bathroom door open.
It says,
‘In peace you do
your busy-ness.'
No-one else is home.’
Apart from two dogs
And four cats that hiss.

Calling Earth: The Artificial I (this is a poem)

Calling Earth: The Artificial I (this is a poem)

The Artificial I (this is a poem)

(I wrote this when I was in a lecture and bored because the lecturer talks so much I can't follow what she's saying)

Sometimes I
would like
a joke shop eye.
An oversized
googly
squishy
stress ball eye
to 'accidentally'
drop on the floor
when the lecturer talks too much
and I get bored.
It would stare at her
from under the table.
Such would be
the joy
of giving her
the evil I.

My bit of the email I sent to my MP

Because we have communication problems, it's hard for those of us on the autism spectrum to explain to other people what is difficult. We are SO used to somehow 'coping' and 'getting by' that we can't express what problems we have. Or we have given up trying because people misunderstand so often.

If my native language was Urdu, or Welsh or Hindi or Polish or Hebrew, there would be a form, written in my native language, to fill in. I could get it in LARGE PRINT or braille, or on a talking tape. We ought, really, to be recognised as racially different as that is very close to reality. We are supposed to speak the same language but you don't understand us. It is us, with our desperately frustrating communication difficulties, who have to learn to speak to you.

And do not be deceived by how I have articulated this message. I write much better than I speak. It's difficult to stammer in written words or to have thoughts suddenly fall in to a void. Nobody can interrupt when I write. If I can't think of the words, it does not matter how long it takes, nobody is there to get impatient.

The fact is, nobody is there. Anyone with autism will tell you the same. Nobody is there.

Would someone please tell me where this particular rant came from?

Maybe, when we are old, and have no teeth or eyes or ears and cannot walk, we will live in a community which takes off its hat to the bloody minded old fart who has fought the fight and refused to give up. This would be my dad. Some people lose their limbs in an instant; their sight, hearing or mind at the blowing of a whistle. For the rest, it takes a lifetime.

We may ask: 'Given two choices, would you rather lose your mind or your body?'

I come from a family whose bodies are spent long before their minds. I would rather lose my mind, which has always been out of sync with this world, to be honest.

Where is the glory in having a limbless body or sightless eye in a world that recoils from the imperfect? I would rather have no mind and thus no knowledge of the ridicule to which I would be subject. I would prefer to be unaware of the injustice and prejudice inflicted on the vulnerable.

My mum had some casual work over Christmas 1977, in a Quaker old peoples' home in Nottingham. Mum had various tasks to do and one of them was to talk to an old lady who was blind and deaf. I cannot remember her name, nor what she looked like, apart from her skinny, wasted, legs, no wider than my thinning, anorexic, wrists. To communicate with her, mum had to take hold of her hand and 'write' on her left thigh, spelling out words, letter by letter. You will possibly try it out for yourself by closing your eyes and writing your name on your own thigh. How can you have a conversation like that? This woman did. She even had the mental capacity to accomodate handwriting styles, as my mother had an unusual way of writing the letter 'G' - as in Glennis (mum's name). 'Yes' was an upward and downward movement. First gear to second, if you drive. 'No' was checking neutral, if you like, an horizontal movement. To be honest, it got a bit boring and I moved from watching this communication to other things within the room.

There were pictures of a beautiful young woman, vibrant, alive. Some looked like wedding photographs. They could have been 'stills' from the silent movies I remembered watching, not too many years before. An alarmed heroine, strapped to a railway line, crying for help. And all the while, the piano music smashed and crashed in the background. A conglomeration of cinematographic memories choked me. Who was this voiceless, screaming, woman? Fifty years later, my mother was holding her hand.

Over thirty years on from that, I wonder if that nameless woman danced. In her own time, in her own space, did she remember the music she fell in love to? The songs she sang? The hearts she broke?

And what would she have thought if she had known she would become a skinny thighed, deaf, blind old woman, locked away in one room of an old people's home with all of her mind and no body?

I would rather lose my mind. I would want to piss on those scummy, hooded, little shits who think they own the world than owe my body to the stupid, fucking, morons who went through college and think they know what it's like to be old, blind, deaf, voiceless.

We might like to think, in our perfectly Christian way, that this old woman 'found peace'. I wouldn't. Not if I had a thinking mind. Fuck, no. I would stumble, blindly around my room, putting all my precious pictures and special things away in a safe place and trash that fucking prison some sick bastard locked me in to.

Lewi's Birthday

Right at the top of Lewi’s birthday list was Daddy.

He hadn’t been there when Lewi started big school. Or when he came out, after his first day, with the painting he did of the soldier. It was Daddy in a desert, looking high as a mountain and wide as the sky.

He didn’t like the way the paint ran off the end of Daddy’s jacket because that wasn’t what happened in real life and he wanted his painting to look just like Daddy in his big boots and desert cammo.

Lewi had never seen a desert but Mummy said it was like a massive beach without any sea and that was where Daddy had gone.

Lewi looked out of his bedroom window. He wondered what Farmer’s Field would look like if it was all sand.

By the moonlight, Lewi thought he saw the fox but it did not matter. Lewi was getting to be a really big boy. Foxes might be scary for little kids but not Lewi.

Lewi was five tomorrow and nothing got the better of him. No way. He was Indiana Jones and Tilly Tylor was enough to frighten anyone off. She might have been a fat old dog to anyone else but to Lewi, she was a fearsome beast and not to be messed with.

With the moon shining in through his window, Lewi fell asleep.

He had dreams of fantastic adventure and other wonderful things about birthdays and wishes he kept secret under his pillow.

Lewi ran and ran for miles until he was almost too tired to run any more. Tilly just about kept up and they ran so hard they began to fly. Over mountains, forests, shark infested seas and hot, dry, deserts. Paige waved them both goodbye.

Lewi was Indiana Jones alright. Nobody could stop him.

Lewi swam like a fish across shark infested oceans. He crossed deserts, climbed trees, zapped nasty skeletons and poisonous snakes. Faster than the speed of light he raced, cracking his whip. Nothing could get in his way.

As Lewi flew over the top of the tanks and tents, he saw him.

Daddy! It was Daddy!

Lewi began to fall, spinning faster and faster. It felt like forever until strong hands caught him.

‘Hello, big man, happy birthday’ Daddy said, grinning, ‘what’s it like to be five, then?’

‘The best,’ said Lewi and grinned right back.

Archie's Cardboard Castle

King Archie had a cardboard castle. It was pretty huge and made from empty packing boxes left over from moving house.
King Archie loved it. It had everything a little king could ask for.
Huge turrets.
A gatehouse.
Spyholes.
A comfy carpet.
There was even enough room for Prince Blue, the dog.
Day after day, King Archie and Prince Blue played in the castle, fighting off scary people like Big Chris and the cat from next door.
Archie was feeling very brave indeed.
One day, King Archie got up and went outside to his beloved castle but it was gone.
He was furious. Who did this? What evil person could have destroyed it?
King Archie sent spies out the length and breadth of the land and discovered, to his horror, that it was an invading army led by the poisonous Baron von Gunner.
King Archie and Prince Blue set out immediately to conquer the Baron and make him say sorry.
It was a long, hot, day and King Archie was glad of the sandwiches, little yoghurts, carrot sticks and fruity drinks his mummy had made.
Night time came and so did the cold. It was a good thing Prince Blue was there to keep King Archie warm.
As the sun rose next day, King Archie could see the distant Baron von Gunner spying on him. He climbed on his horse and rode furiously across to where he was hidden and surprised the Baron.
With the greatest, biggest, scariest ‘Boo,’ he could muster, Archie confronted the cowering Baron.
‘Why did you break down my castle?’ King Archie demanded. He had to admit the Baron looked pretty fierce but he wasn’t going to let on to anyone. He wanted answers.
Baron von Gunner looked sad. ‘I was jealous,’ he replied. ‘I didn’t have anyone to play with.’
‘Well,’ said King Archie, who was nothing if not a very generous sort, ‘as I have only just moved house, I’m a bit short of friends to play with myself yet. If you help me to rebuild my castle, we can play together.’
Baron von Gunner looked grateful because he knew King Archie could pack a mighty punch and happily agreed.
So King Archie and the resplendent Baron von Gunner rode back together. King Archie even shared his fruity drinks and sandwiches with the Baron. The horses shared the carrot sticks and Prince Blue led the way.
Baron von Gunner, it turned out, was a dab hand at building and made King Archie’s bedroom into a castle fit for a king.
They were friends and King Archie and Baron von Gunner had the happiest times together.
When Baron von Gunner finally had to leave for a short time, to fight in a dusty foreign war, King Archie knew he would always have a friend out there.

I have a new Mentor

I thought it might be worth sharing the email I wrote to Alex, my mentor for the coming academic year, my final one at university. We have been trying to work out a convenient time to meet before the new semester begins.

In his last email, Alex told me he had worked with a lot of people with Asperger's syndrome and decribed himself as having 'long brown hair and a beard'. This is most of my reply

I knew I had some extra breakfast shifts coming up but didn't realise it was as early as this week. I'll be working Friday, Sat, Sun, Mon and Tuesday breakfasts. Weekdays, my hours are 5.30am until 1.30pm. If we met Wednesday morning, I would bring my boyfriend as he would probably like to know I was going to be alright, which is kind but daft because I usually do cope, somewhere between really well and crisis, on my own. Wednesday, Thursday or Friday the following week are also good. I realise I should have looked in my diary first. Sorry to be messing you about. Makes me feel like a spambot.

From your self description, you sound like Jesus so if I look at your feet first, I'm only looking for sandals, ok?

I used to think people meant as colleagues when they said they worked with a lot of people with Asperger's but, to my disappointment, it has been as a helper, not an equal. I can tell by the way people talk they somehow consider me a little less than themselves, or a half wit, but it's actually quite the opposite. You see, if someone you chatted to by the office coffee machine made a joke, you'd at least acknowledge it, even if you didn't think it was all that funny.

Now, if I make a joke, most people who work with the 'disabled' in a caring capacity would not dare to laugh in case I was being serious and it upset me. I might also get a straight answer 'just in case' even though they actually knew it was a joke in the first place. So who is the half wit? Somebody, somewhere, decided that autistic people have little or no sense of humour and social pressure to conform to this idea refuses to acknowledge the blindingly obvious and respond appropriately. Like laugh, or smile, for instance.

It's probably a good idea to become acquainted a little before we meet. I can probably now assume you are a bloke, unless you are a weirdy, bearded lady and some kind of circus freak.

I bet the Daily Mail doesn't publish this.....

In Response to the Daily Mail Campaign in Support of Gary McKinnon

Why was Gary McKinnon ‘obsessed’ with UFOs? Like very many people on the autism spectrum, he felt he did not ‘fit’. My guess he was looking, among other reasons, for himself in his search for extra terrestrial life. That figures. Many of us with the same condition as Gary feel they must be from another planet so it makes sense to go out there and look. His lack of imagination, which is typical of anyone with Asperger’s, did not appreciate the outcome and trouble he may have caused.

As someone with Asperger’s syndrome and the mother of two sons with the same condition, I applaud the Daily Mail in its campaign to get justice for Gary McKinnon. However, it is important to correct a few misconceptions over the condition.

Firstly, Asperger’s syndrome is not a mental health issue. Along with other autism spectrum conditions, it is neurological. My brain, basically, is wired differently from that of most other people and this goes for Gary McKinnon, my sons and many thousands of other people like us. We are not Asperger ‘victims’, as Saturday’s headline suggested. We are more likely to get mental health problems, such as depression, because the world can be so damn difficult to understand. Communication and self expression are really hard for people like us. Some, with classic autism, do not even bother to try and can have delayed speech. Nobody would dare to suggest a blind person was ‘victim’ to sight loss, or a wheelchair user ‘victim’ to mobility problems. As Jane Asher succinctly said, ours is a ‘hidden disability’. We can walk, talk, hear; most of us speak and certainly feel. Anyone with any form of disability would tell you the biggest obstacle they have in life is the prejudice of other people.

While the Daily Mail campaign is terrific in its awareness raising of Asperger’s syndrome, it must be said there are far more than a reasonable share of negative words and terminologies used. Vulnerable, nerd, sufferer, obsessed; these are very stigmatising concepts which need challenging.

In fact, as one or two readers have pointed out, Gary has done the US defence a massive favour. He could have been a real life terrorist. He showed their computer security up for the leaky vessel it was. Perhaps they should offer him a job testing their security. The Taliban would almost certainly welcome his skills. Gary’s talent should be recognised and acted upon. He should not be made a scapegoat or used as an example to deter others when the United States has real enemies of evil intent. His actions were naive, not vile.

What would be most welcome would be to hear from other people with Asperger’s syndrome and have them stand up, loud and proud, for who and how they are. Only by being open and positive about our differences will these negative images, words and terminologies be challenged. Maybe then the world will cease to be confusing, hostile and difficult to negotiate. Hopefully, our Asperger sons and daughters will enjoy fulfilling and active lives as members of the global community and thus begin to feel far less like visiting aliens from space. Only when these barriers are understood and broken down will our lives be free from the pain and suffering brought about by the patronising and discriminatory attitudes of other people in their ignorance.

Best:His Mother's Son

BBC Two, 9pm, Sunday April 26th

Michelle Fairley played the mother of football legend George Best in this provoking drama. In just 10 years, Ann Best slid from teetotal mother to 'nasty drunk'.

Supported by Tom Payne as George with Lorcan Cranitch as Dickie, George's father, the fact based drama illustrate's the downward slide of both mother and son. George himself went from goal scoring superstar at the age of 19 to retired by 27.

According the The Times Playlist, it is unclear why Ann Best 'hit the bottle' but Fairley herself said:

'She was a very private woman, very shy and she just couldn't stand the press scrutiny. Drinking was her way of numbing herself and of dealing with all the pressures.'

Indeed, during the course of the film, Ann and her daughters were subject to taunts, sneers and spiteful comments from people they met in public. The constant hounding of the family by doorstepping newspaper reporters clearly added to the family's stress.

The hurt and pain in the family came across very palpably. The loyalty demonstrated by Dickie Best was both touching and moving.

Ann Best was an ordinary Belfast mother living in extraordinary circumstances that any amount of life experience would never had prepared her for. To family, George was just doing the job he loved and they expected to carry on with their lives as they always had, in the safety of their terraced home. Public figures, it seems, can too readily become public property and George Best became Belfast's 'own son'.

The interior of the Best's house would have looked remarkably familiar to anyone who grew up in the 1960's. It is the ordinariness of the people, their homes and surroundings that drew out the sharpest contrasts to the family's unnatural and unwelcome attention.

Best:His Mother's Son would be worth seeing again on iplayer.

Very sobering.

Anyone concerned about their own alcohol consumption or that of anyone close to them, can find information and support from BBC Headroom or by checking out some of these links.

The national telephone number for Alcoholics Anonymous is 0845 76 97 555.

http://www.aa-uk.org.uk/

http://www.dryoutnow.com/?utm_medium=google/ppc&utm_campaign=DryOutNow_Base_campaign&utm_adgroup=A-A&utm_term=alcoholics%20anonymous&gclid=CL_ovseek5oCFQE0xgodsD1YMQ

http://www.bbc.co.uk/headroom/newsandevents/programmes/george_best.shtml

http://www.bbc.co.uk/pressoffice/proginfo/tv/2009/wk17/unplaced.shtml

in response to a story in Sheffield Star, April 16th, 2009

I don’t do empathy willingly but there was something in the story that cut me right up. The writer, whoever he was, told of a micro moment in his life. How a woman he had never met before and would probably never meet again, offered him her telephone. He did not use the words trancelike, but his writing evoked such emotion that its state was obvious. His story, in the Sheffield Star of April 16th, 2009, told of the woman, who reminded him so much of his own mum, across the Pennines, who would have heard the news that day. How Liverpool football fans had been crushed against riot prevention fencing and had been injured or died for their passion.

The house he was ushered into reminded him of his own, even the cardigan the woman wore was reminiscent of that worn by his mum when she pegged out the washing in the cold. His language was not that of a writer, but its earthiness was all the better for it. It was real, unlike the often detached reporting of an experienced journalist. A journalist would have written a helicopter passenger view of the unfolding tragedy; from the air and remote. His bird’s eye view would have unfolded a perspective very different from the one this guy wrote about. This football fan had gone along to the FA Cup semi-final between his home team of Liverpool with rivals Nottingham Forest from a ‘ground up’ angle. He had been there, in the crowd, witnessed the unfolding disaster, the tardiness of the police to react, who themselves had been conditioned to view pitch invasions as hostile, fights as part of the ‘game’ and had been slow in their realisation that this pitch invasion was different. These were not hooligans, but ordinary people, regular fans, trying to escape the suffocating crush of too many too quickly herded in to the cattle pen terraces, to the death of 96 people and injury of hundreds more.

I knew, as I read this man’s story, that had I been the woman whose telephone he used, I would have done the same. Football may not be my life, but I have children and loved ones. It was not difficult to flip the camera round and be the mum at home, listening to the match; feeling helpless, knowing it was my lad and his mates who had set off for Sheffield that morning with their spirits as high as the scarves that trailed from the back windows of the car. Not many people had mobile phones in 1989 and calling home took longer, the wait slower. I could have been the mum waiting in agony for the call that said, ‘Mum, it’s me, we’re alright.’ I certainly would have been the Sheffield mother in the cardigan, pulling that young lad into my house so he could call home.

Maybe you don’t have to ‘do’ empathy. Sometimes it ‘does’ you because we have all been there, seen stuff and needed a bit of a helping hand along the way, even from strangers. And if it helps someone else along the way, then so be it.

Electrodes, eye balls and autism research

It is intriguing how researchers are so fascinated by the autistic personality. How our minds work, how retinas react to light, how daily ‘feelings’ differ, how we appreciate music. Brains have been fMRI[i] scanned, language studied, stress levels measured. The stuff of cold war sci-fi movies indeed. If you don’t understand it, take it apart and try to make sense of it.

There is sometimes no purpose to the research other than to prove a theory. It is not necessarily designed to help people on the autism spectrum, their friends or families. Nor is it with an aim to design better support or help the diagnostic progress. It seems that research is often done simply because the subject matter is so interesting. Sometimes, too, because the savant skills demonstrated in the minority of people on the autism spectrum are coveted and replication in the typically developed (TD) person is highly sought after. Science desires the production of its master race.

Welcome to the world of the lab rat.

I recently visited City University, London, to see ophthalmologist Dr Paul Constable. I had my retina measured while looking into rapidly flashing lights. Although the drops made my eyeball numb, the electrode on it still got a bit uncomfortable. Waiting in the dark for the drops to take effect gave us opportunity to discuss Paul’s research and the reason for it. Retinas in autistic people react differently to light from those of ‘normal’ people. He said, “Indeed some people with autism have different retinal responses, some are normal and others are low, but this only occurs in ~ 30% of people. I think this is because the same chemicals that work in the brain also work in the retina, and in autism these chemicals are in an imbalance, hence the different behaviour patterns.” It might explain why many people on the autism spectrum are sensitive to certain kinds of lighting.

Rory Allen, a PhD student at Goldsmith’s College in London is researching music and autism. As music has meant so much to me over my lifetime, I was very keen to take part. According to the information sheet:

Research suggests that people with an autism spectrum condition enjoy music in the same ways as people without the condition, but that they may describe their reactions to it differently. The purpose of this study is to check whether this assumption is true or not.

It seems that people with autism experience very strong emotions when listening to music.
Rory’s tests involved attaching electrodes the second and fourth finger of a subject and measuring responses to music played through headphones. The first test was a piece of music chosen by the subject. Subsequent tests involved listening to 30 second classical sound clips as stand alone pieces or whilst looking at happy and sad faces on the computer. Hit the space bar to continue to the next image.

Another part of the tests, minus electrodes was to have a sheet of paper upon which were boxes with ‘bundles’ of words on them. For instance, bundle five words were lively, dancing, energised, upbeat, adventurous, exuberant.

The aim was to listen to a sound clip and choose from one of the boxes which set was most accurate. When I did this, we got into quite a complicated debate over the word ‘emotion’. How could I explain that my response was unemotional? I picked the bundle that closely matched the words that the music evoked. A clip might sound happy, sad, lonely, bright or cheerful. The clips evoked words rather than an emotion for me. Hence my reply was, ‘This music sounds like box (n)’.
It did not mean I experienced that emotion. Perhaps he was overlooking my emotional attachment to music. With these clips, I had none. With my own choice, I had plenty.

I take part in these tests as a volunteer, receiving travel expenses and, occasionally payment. But that is not why I do it. Knowing I am helping students gain their doctorates, develop understanding and awareness while learning about myself and my own autism is very satisfying. Having grown up when little was known about autism and virtually nothing about Asperger’s syndrome, it is easy to appreciate the importance of earlier diagnosis and appropriate treatment. It challenges prejudices and misconceptions. Autism is not a mental illness but being misunderstood can, and does, lead to mental health problems such as depression and suicidal tendencies. Parents will continue to have their children labelled ‘naughty’ because Asperger’s syndrome has not been considered. If people like me don’t get out there and help researchers, they have nothing to work on but assumptions, which can be very wide of the mark and leave this beautiful race of people in an unnecessary cycle of hurt.

http://www.ich.ucl.ac.uk/gosh/clinicalservices/Ophthalmology/Custom%20Menu_01
http://www.city.ac.uk/optometry/about/staff/constable.html
http://psychology.uwo.ca/fmri4newbies
[i] Functional Magnetic Resonance Imaging

see also:

http://www.medicalnewstoday.com/articles/123484.php

http://www.highbeam.com/doc/1G1-188796109.html

This one is interesting, especially as this person uses the same blogger background as me:

http://thequirkylayman.blogspot.com/

My dad, the author Robert Page

You probably haven't heard of my dad yet, but he's an author.

This is the two of us after a day out at Rufford Abbey in north Notts.

Although he has been writing for as long as I can remember and has written three novels, with a fourth on the way, it took 25 years of never giving up for O-Books to accept one of his books. He will be 75 when it becomes available on the bookshelves but what a testimony to tenacity.

Dad used to promise us a big house in the best area in Nottingham, once he sold his book. I don't think we ever took him seriously, not because we knew anything about the dreams of a drunk back then, but because he was always telling stories.

We got the one about the first Christmas pudding; haggises running around scottish hills, one set of legs longer than the other so they didn't fall off the mountain side; the story of macaroni and other wild, outlandish tales to keep fidgetty children firmly stuck to dining chairs until the grown ups had finished eating.

It was dad who taught me how to play chess and we'd shut ourselves in another room for hours. Or we played word dice games. He never let me win and thank goodness for that. It made me work hard and built a fighting, competetive spirit.

He was as high as a mountain and wide as the sky, my dad. We both loved those weekend and school holiday epic walks with Rebel, our black labrador cross. Oh, we'd put the world to rights, the two of us. We'd paint fairy tales across the sky with those dreams of a world full of justice and rightness. We were what Mum would call 'as thick as thieves'.

It was as we got older that the darkness set in and the evil shadow of his alcoholism strangled the light from his eyes and rational thought from his mind. I grew used to lying in bed, rigid with fear, listening to his drunken rants, afraid he'd come upstairs and murder us in our beds.

My high as a mountain and wide as the sky dad shriveled to less than a dirty molehill.

Mum packed his bag and kicked him out when I was 15. I came home from a theatre visit and the house was quiet. He'd gone and with him went the dark, black shadow of his illness. For us, mum, my sister and two brothers at least.

For Dad, it began his climb to wholeness and health, sobriety and sanity. It was to be a long journey but he never gave up. And he's still growing: back to that high as a mountain and wide as the sky dad. I think he may even have the odd haggis running around at his feet somewhere.

This is the link to author Robert Page's book.

http://www.o-books.com/product_info.php?products_id=660

his blogspot is

http://bobp-fromtheheart.blogspot.com/

Healthtalkonline

Healthtalkonline began in 1999 and began to gather people from across the country to talk about their personal experiences of various health issues and their effects on individuals.
Subjects that affect all of us in some way are covered, such as cancer, dying, mental health, pregnancy and childcare and living with disability are discussed in face to face interviews with real people telling real stories. Their own stories. This website is unique inasmuch as it acts as a tool and reference point for healthcare professionals, educators and the public alike.
I was interviewed in July 2007. I volunteered after seeing a link on the National Autistic Society website and was contacted by Dr Sara Ryan, pictured above right, from Oxford University. We met at an hotel in Derby for the video interview, which can now be seen at http://www.healthtalkonline.org/disability/LifeontheAutismspectrumAdults/People/Interview/1608/Category/172. We talked at length about my life experiences as someone with Asperger’s syndrome.
At the time of my interview, I was suffering from what turned out to be a prolonged period of depression, a subject also covered on the Healthtalkonline website.
The renamed and reshaped website was launched on October 13th, 2008 at Altitude 360, Milbank Tower in London and I was invited. By Lord Stone of Blackheath, it appeared. Altitude 360 is a reception room at the very top of Milbank Tower, which was built in 1963. It was here that, on December 19th, 2008, just two months later, Lord Mayor Boris Johnson announced the New Bus for London.
It was a strange experience to turn up for our ‘Writing the News’ module that morning with my wheely suitcase, knowing I would, several hours later, be at a unique reception attended by author Philip Pullman, Ann Keene MP and Parliamentary Under Secretary for Health Services, face of Channel 4 News, Jon Snow and others. I would be making the news.
Perhaps if a resource like Healthtalkonline had been around back in the early 1970’s, when I was 9 and referred for the first time for psychiatric help, it would have helped those caring for me, including, and especially, my parents, teachers and wider family. Perhaps they would have been more understanding. Perhaps I would have been treated more kindly. Perhaps there would have been no need for the three years spent on highly addictive drugs that were only ever intended for short term use and are now never given to young children. Perhaps I would have been treated more kindly by the women on my mother’s side of the family, who ridiculed my lack of femininity and mocked my tomboy, outdoor lifestyle. Perhaps, too, I would not have been driven to live in a fantasy world where my best friends were Kid Curry and Hannibal Heyes, from the popular TV series, Alias Smith and Jones. My bike would have been just that and not the ‘horse’ I rode for miles on my own, with my ‘dog’ at my side. It would have helped to avoid the black rages that filled my head in response to yet another misunderstanding. Perhaps I would not have suffered twice from Anorexia nervosa, prolonged bulimia nervosa and three failed marriages.
The launch party was a personal triumph. Negotiating the London underground and locating Milbank Tower was a victory of fear over need to be there. A melding of journalist with autist. I felt very small and frightened, knowing, as usual, I would be the visiting alien. Would there be anyone else there ‘on the spectrum’?
It was the second time I had met Sara who, thankfully, recognised me. She was with two other women who did not look at all autistic. My facial recognition may be patchy but I always recognise my own and these two women were on the website because they had autistic family members. Sara introduced me to Mark, who was also interviewed for the website. He was 27 and had Asperger’s. At the end of the evening, we walked back to the tube station together. ‘At least,’ he said, ‘I didn’t get laid.’
I looked him up on the website when I got back home and found he was rather prone to one night stands because he was so bad at forming relationships he foresaw himself as staying single.
I had my very recently bought contacts book and got so many numbers, email addresses and contacts, my head spun whizzier than a psychedelic spider’s web. Philip Pullman gave me his number and signed ‘The Subtle Knife’ for my son. Jon Snow was incredibly kind adding his email address and work number. Lord Stone gave me his card and a very English ‘peck on the cheek’. I got so many business cards my Filofax looked like the seven ‘thin and ugly cows’ swallowed up by the seven fat ones in Pharoah’s dream (NCV 1993). Still skinny, but something to remember in the morning. So, too, did Jon Snow’s tie, which I won in the fundraising auction. It cost me the equivalent of one month’s mortgage but memories are priceless.
Healthtalkonline is priceless, too. Not just for the people taking part but for families, friends and the miscellaneous menagerie of professionals who need educating.
Dr Jonathan Miller spoke at the launch. As a medical student at University College, London, in the 1950’s, he noticed that doctors had little time to spend at the bedside of patients, whereas nurses did. He spoke of the Monty Python sketch and ‘the machine that goes ping’. The medical profession were, at the time, more interested in the mechanics that made people well but were out of touch with the people, the humanity, behind the suffering. In his eyes, Healthtalkonline was the avenue by which those affected by illness could voice their feelings. Until these people are consulted, considered and cared for, the machine will continue to ping louder than human suffering.
Healthtalkonline.org is a meisterstueck , a brilliantly obvious platform for the little voice to shout.
And I was part of it.
http://www.healthtalkonline.org/Home
http://www.youthhealthtalk.org/
http://www.nas.org.uk/
http://www.entertainment-press.biz/albums.php?albumId=74025
Genesis 41:20-21 NCV
http://roycecarlton.com/admin/speakers/fileuploads/Miller_Info-Kit.pdf

Meeting Kevin

I met Kevin ‘the boss’ in a taxi this morning, when he took me to the train station. He used to co-own Premier Taxis in Sandiacre, Derbyshire, with Tony Roe and I went to work for them as a weekend night driver between 1994 and 1998.
In just over five minutes, he filled me in with his life to date and I remembered how much can be found out about someone in such a short space of time and the importance of making an instant connection with the customer. Journalists can learn a lot from taxi drivers, in the context of a news story and getting information from someone you may only meet for a very short time is a useful skill.
Kevin told me he heard the world from his car and my former experience as a taxi driver would agree. He got, he said, the credit crunch stories from people who lost their jobs, the bosses forced to lay off staff and those struggling with falling interest rates.
After selling his share in Premier Taxis, Kevin became the manager at a Derby bus company but began to disagree with some of their practices and so turned full circle. Going back into taxis as a driver rather than the boss, he could ‘leave the stress behind’ and go to work, do his job and go home.
Erewash Borough Council, the area Kev drives in, requires a taxi driver to have an almost clean driving licence, full CRB check, a medical and a ‘knowledge’ test to check how well they know the area. There are unwritten skills which, in other professions, would need a university degree or diploma at least. Some passengers like to talk. It could be current affairs, sport, or acting as counsellor in domestic fallouts or personal hurts; listening to someone’s worries at the loss of their job; talking sport. Sometimes getting fed pizza, chips or offered fags. On occasions, the driver could be somebody’s last hope of ‘pulling’ that night. Oh, for a fiver for every non enticing invitation to call back at the end of the shift. In my four years as a night driver, I also saw the world, as Kevin has. Taxi drivers can be best mate or invisible. Every kind of possible domestic relationship is played out in the back of a car. Tears, tantrums and tender moment, even physical fights.
We take for granted the jobs people do but, having been in taxis as both driver and passenger, there is a story in everyone. Talk to the driver, the hairdresser, barber, shop assistant. Everyone has a story to tell. Does anyone, I wonder, ask the driver what theirs is?
As with a writer putting in that last full stop and pressing ‘send’, tonight Kevin ‘the boss’ will turn off the engine, get out of his car and go home. Job done.

The Story of Caspian’s Cross

I can see you looking at this cross around my neck. ‘Where did it come from?’ you ask and, ‘what is its tale?’
Sit with me, child, and I will tell you the story of Caspian’s cross.
It was a very long time ago and Caspian and Elizabeth were not long wed. He was a sailor and soon off to sea on King Henry’s new ship. It was named after his only sister, Mary Rose, to whom he was very close. There was much pageantry at the launch of the ship, with King Henry and his entourage of courtiers, musicians and players lined up at the dockyard, waiting for the Mary Rose to set sail. How grand they all looked in their bright coloured finery. How great, too, were the celebrations as the King loved so much the pomp of such occasions.
The young wife clung to her husband as they parted. Taking the cross, given to many of the sailors as a good luck talisman, from around his neck, Caspian pressed it into his wife’s hand. ‘Goodbye, my sweet life,’ he said, as he kissed her tear-wet cheeks, ‘I shall return and we will be together again soon.’
A huge fanfare erupted as the Mary Rose set sail, with many people lined up along the harbour, cheering and waving bright ribbons. The King looked on in pride. The jovial air soon turned to gasps of horror and screams of fear as the Mary Rose broke apart. Although it sank quickly, it gave enough time for the screams of the drowning sailors to reach the harbour wall where Elizabeth stood. The many other hundreds of people who had, only moments earlier, been shouting and cheering with excitement at the wonderful sight wailed with grief as the Mary Rose was pulled under the water.
Caspian, along with many hundreds of fine sailors drowned that day.
A few months later, Elizabeth’s grief was softened by the birth of her son. She called him Caspian, which had been his father’s name. Although she wept much for her husband whose eyes the boy had inherited, she warmed to the new life she had given birth to. Upon reaching his adulthood, Caspian’s mother, placed the cross given to her by her husband on the day of his death around her son’s neck and with it she gave her blessing.
Caspian grew from sturdy and adventurous boy into a strong young man and a successful merchant. He travelled through many foreign lands, bringing rare spices and fine cloth back to these shores, blessing his mother with many comforts as she grew older. He fell in love with Marianna, the daughter of an alderman in a Prussian city, and made her his wife. They had four strong and handsome sons and six daughters, all fair of face and beautiful. Their eldest son, to hold with the family tradition, was also called Caspian, like his father and his father’s father, the cross was passed to him upon reaching adulthood.
Following in the way of his father, young Caspian became a wealthy and successful merchant who loved both God and his fellow man.
When he was six and twenty, young Caspian wed Catherine, his childhood sweetheart. They were very happy, made more so by the forthcoming birth of their first child. Maybe she would have been strong enough to safely deliver their daughter but it was a long, hard, labour and shortly after the baby came into the world, bore another child, a son. She had been carrying twins and the loss of blood proved too much for her frail frame. Young Caspian stayed by his wife’s side through the night but, as the spring sun washed away the early mist, Catherine died.
Filled with grief at the loss of his young wife, Caspian gave up his life as a merchant and joined a band of travelling players. His twin children, whom he had named Caspian, to hold with the family tradition, and Gisele, who was as beautiful as the mother she had never known.
The two children lacked not for want of a mother’s love as the players proved to be all the family they could have wished for. They grew strong and full of mischief, learning many foreign tongues as the band of players moved from one country to the next. It was a happy time. Young Caspian became known as Caspian the elder and his son Caspian the twin. Father taught son to make marionettes for the shows they put on and the women taught his daughter to tell the stories that went with them. For many years, the family of players travelled, relaying news of wars, plagues and rumours of unrest at the folly of King Charles I, whose Catholic wife held much sway in the English court.
One very cold night in winter, the travelling players took shelter in a barn belonging to a rich Lord whose patronage was well known. As the blizzard worsened, they dared to light a fire. The wood was dry and the barn very old. Suddenly, the door blew open and a swathe of sparks flew upwards, into the air and caught on the roof, setting it alight. Many of the players perished but Caspian the elder saved the lives of many more, returning again and again to pull women and children from the blaze, including his own. The roof collapsed and Caspian the elder was crushed. His body was pulled from the wrecked building the next morning. The cross that had passed through three generations was given to Caspian the twin.
He and his sister, Gisele, travelled on, mourning the loss of their father and the friends who died in the fire. They took the plays from country to country, as ever, arriving back on these shores in the midst of Civil War, where their news was gratefully and fearfully received in every town they reached.
‘But how came you by Caspian’s cross, mother?’ you ask.
Child, you have not seen six summers yet well you question me. I am Gisele and Caspian was my twin brother, my father, grandfather and great grandfather alike. Fever ravaged our band of players. Caspian fell sick with it and died. I was his only family and his cross came to me. I am all the daughters of my father’s house, and all the brothers, too. When you are grown into a man, the cross will be yours as you also bear the name Caspian, to hold with the family tradition.