Calling Earth

My Gran

2011-04-18T04:54:00.001-07:00

Why do you call it elevenses, Gran, when you have it at half past ten? Why don't you call it half past tenses? I asked. I miss my gran. Once in a while, every now and again, it would be wonderful to have one day with her again; one last day. I loved her. My brothers and my sister loved her, too, with her wobbly hands and wonky legs and how she had to come down the stairs backwards. As children, we of course imitated her genetic neurological condition, unaware of that which we copied had been passed on to us. She said seeing me being born was the most beautiful thing she had ever witnessed. Many years later, with small children of my own, Gran said I was like the daughter she never had. She had an understated way of making her grandchildren feel special and secure.

Gran always had special things, like cakes or chocolate marshmallows in foil. There was such a fabulous aroma of almondy Bakewell puddings as she pressed the tin against her chest and popped off the lid. If we timed it just right, she would sit us at the dining table while she waited in the kitchen for the milk to boil and the ritual of elevenses at half past to begin. The spoon scraping against the walls of the white china cup and saucer while mixing the coffee, sugar and blob of milk together was enchanting. The milk would boil and Gran carried the saucepan through, walking like a racehorse, lifting her feet high off the ground. She had to do that to stop herself from tripping, which is why she wore calipers on her legs when she went out and had to come downstairs backwards. The angry bubbles hissed against the sides of the pan, spitting like fighting cats. Fsssss. She had to carry it with one hand on top of the other, to steady the wobble.

My sister and I loved to go round and play. We were puppies in a garden of mischief. There was an inner lobby between the dining room and lounge. A curtain hung from a metal rail on the dining room side, which made a fabulous swishing noise when pushed aside. It was a den, a cozy place. We would lift the lid on the storage box Gran called ‘Humpy’ and dress up in the chiffon scarves, all neatly folded, inside it. Humpy was made from half an old wooden barrel with an upholstered lift off lid in brown vinyl. The cellar steps, behind a clunky door led off it. Gran had to take our dad, as a small, sleeping boy, down there during air raids in the war, while Grandpa was at work. He had been a policeman in the Second World War.

Routines. My grandparents were defined by them. Maybe that was a reason I, for one, felt so secure at their house. Predictability and a love of routine is a key element in autistic children. Without it, we can flounder and fail to function. It can lead to reactive behaviour, which most people, lacking awareness, would interpret as bad behaviour.

Gran and Gramps did not have a bathroom but they had a fridge. She bought frozen peas and they were so much nicer than the tinned ones we had we had at home and got moulds to make ice lollies for us. We had a bathroom, which was very much like a fridge in winter because nobody had central heating then. It was so cold. Running a small amount of water in the bathroom sink to see whether or not it would freeze overnight was an experiment I tried many times. It never worked. Somehow, the water was never there in the morning. Maybe the plug leaked.

Their toilet was outside, like ours. It was lined with polystyrene tiles in a cracked ice design, painted yellow. They always had toilet paper, which was somehow affirming. Special people had toilet paper. At home, we used to run out and mum would make books of newspaper and hang them from string. It annoyed me. Why could she just not remember to buy toilet paper? Many years later, I realized she probably could not afford it.

They also had a television and Gramps would watch sport on it every Saturday afternoon when Gran went shopping with her sister, down town, as they called Nottingham. My great grandparents had nine children, five boys and then four girls, one of which, Dorothy, had died aged six. Ivy passed away when I was a baby. It had been their family custom for new babies to be named by the older ones and the brothers called their youngest sister Florence Harriet but the girls wanted her to be Mary, which is how she came to have two names. Their use of language fascinated me. They would buy things like a ‘bit of cooked ham’ and said trews, or troosers, instead of trousers, which hearkened back to their Scottish mother. And they would buy apples, always Granny Smith’s because that was what Grandpa would eat for breakfast, along with a slice of bread and butter. He would always peel the apple and poke a slither through the bars of the bird cage for Scotty the budgerigar to eat. If we timed it just right, and timing was the key with my grandparents, and went round to Gran’s on Saturday lunchtime before she went into Nottingham, she might take us with her. It was boring but so was being at home on weekend afternoons. All mum and dad did was watch old movies, the kind where everyone spoke in clipped English accents and the heroine swooned into the arms of the hero. Dull. And why did they all have radiant white faces?

If we went round to Gran’s after she had left to go shopping, we would find Grandpa alone in his armchair, watching horse racing or rugby. We would have to duck under the thick blue blanket of smoke as he puffed on his afternoon pipe. He was virtually motionless and slightly intimidating, almost dangerous, somehow, without Gran there. It was his lack of engagement, his silence, which added a sinister element to him. Unless he was crossing the road, he was benign and harmless. My sister and I could climb all over his chair, with him in it, and put curlers in his thin grey hair. He would never move, or say anything. He walked like Winston Churchill, slightly stooping forward and with the determination of a veteran from somewhere and of something. He crossed the road like Moses parting the Red Sea. Lifting his walking stick high over his head, Gramps would just step right into the road and march out. It was terrifying. Cars would have to stop. Grandpa, we’re going to get run over, I’d shout but would have to follow him, anyway. It was fear mixed with trust and bouncing along behind him was slightly less frightening than being left on the wrong side of the road. Dad said he still thought he was a policeman but that was how he met our gran.

He was a widower and the father of two children when he met his future second wife. She had an older brother Harold (Bob) Bexon, a veteran of the Great War’s trenches. In the throes of a nervous breakdown he was convinced he was in trouble with the police. Gran and her younger sister took Harold to the ‘local nick’ where my grandpa worked.

Dad said, many years later, it took some time to convince uncle Bob he was mistaken but he and Grandpa became very good friends.

Gran and Grandpa had a friend with a seaside caravan sited at an east coast resort near Mablethorpe and they would go there for holidays. They took my brother David once but dad had to go and fetch him back because it frightened him. He was very small and had never been in a caravan before. Convinced it was actually an ambulance, he was unsettled so Jane and I went instead. It was totally wonderful to have the freedom of our grandparents’ attention. Their holiday routines were fairly similar to their everyday at home ones. Each morning, Grandpa would get up and walk around with his braces hanging from his trouser belt with his portly top half covered by a white, granddad vest, slightly pulled back at the sleeves. He still had his breakfast bread, butter and apple. On our first morning, I watched him place a slither of apple skin precisely in the middle of one of the large roses which patterned the plastic table cloth. Grandpa, why are you doing that? I asked. It’s for Scotty, he said. It was amazing they did not actually take the budgerigar away with them but he was safe with aunt Mary, who had one of her own, who could talk. He would say Beauty Bexon, best budgie in Basford.

Their acceptance of me was almost total, unlike it had been when dad was growing up. My grandparents were children of Victorian England and inherited its values. Strict. Children who ‘must be seen and not heard’. It stifled the growing boy, who was constantly being told to ‘be good’. Being good, it seemed, meant obeying without question or he would not have been loved. I saw quite a lot of this trait in dad towards the end of his drinking days. At least in the expectation of complete obedience; there was no ‘love’ attachment to add a glimmer of redemption or reward. Had gran and aunt Mary not had occasional issues with my tomboyishness and wearing boy’s clothes, they would have been perfect. The calm and gentle pace of their lives with its predictable routines was what made them so secure. Even their houses had a familiar, similar smell. Aunt Mary went to Gran’s for Sunday lunch every week and every week, Gran would cook casserole for aunty to take to work in a flask. Sometimes, when it got boring at home, I would wander round the corner to enjoy the ambience of my grandparents’ house, which would also become dull so I would walk up to meet aunty coming along the road. Like Gran and Gramps, she adhered to routine and would leave home, the one in which she and her siblings had been born, at the same time, using the same route. It was about a mile and a half away but the walk involved passing tall and oppressive Victorian factories, which were dark, silent and menacing so seeing aunty walking along was always something of a relief. If their sister, Ivy, had still been alive, she would probably have also been on that walk but Ivy had died when I was a baby and Gran never cried so much but never cried again.

Tears. An intense closeness developed between Gran and me, when she was dying. She longed for it, prayed for it. She spent the last two years of her life going from hospital to home, to nursing home and back. Her inability to let go of life was hard to watch and my drive home from the visits I made. The feelings of uselessness were intense. How could I make her more comfortable? What could I do to help? She asked me to pray for her, so I did, holding her hand and pouring all the love in my heart into her emaciating body. Oh, Lord, come and take me, she would plead. She wanted to cry but could not so I prayed for her to have the relief of tears pouring down her face, to soothe her. And I would read to her until the pain of hearing words became too much. She said nobody understood what it was like. So I prayed for dreams and had one. In it, she was up home, as they called it, the small mid terrace she had lived in with her parents, brothers and sisters. The one her brothers left to fight in the trenches. They all came back to leave again when they married and had families. The home, warm, loving and secure, where her father was, who was the kindest man on earth and brought her brandy in hot water to take away her period pains. In my dream, we were in the house but it was just a little different. The yellow walls were there but, in the kitchen, there was an arrangement of bench seating. Gran was sat with her back to the wall and I gave her a meal of fish fingers, peas and potatoes. Giving it to her, I asked her a question. The next day, I visited the hospital again and asked Gran the question from the dream. Do you ever wish you were back at home with your mum and dad? She said yes, I do. Exactly as it had been in the dream.

Once, I sat holding her hand and found myself stroking her forearm, very gently. Out of nowhere, I asked if her dad used to do that when she was a child. He did.

They say people with autism lack empathy. Sometimes, we feel others’ pain so intensely it suffocates and becomes unbearable so we lash out, run away; become aggressive. That is why the world, in its insistence that we demonstrate and express ourselves in proscribed ways, to fit a pattern does not understand. It therefore becomes dismissive of our difference.

Gran looked beautiful, lying in her coffin. She had no wrinkles and was at peace, at last. Jane came to tell me. There would have been no other reason for her to call that evening and I turned around in my living room doorway and said she’s gone, hasn’t she? Yes. Oh, I’m so pleased. I did not know what else to say but it was true.

Six weeks later, Grandpa died.

Deal with your baggage or it deals with you

2011-02-22T15:36:00.000-08:00

They were sitting in their car opposite my house. No doubt I should have felt extra safe that Friday night, sleeping, knowing the visible presence of two of Derbyshire’s finest police officers keeping warm in their Vauxhall Astra with the flask of tea provided by neighbours would deter any miscellaneous miscreants strolling along. The street was quiet, at last; the fire engines had gone along with the council workers, ambulances, news reporters and road barriers. A respectful silence had fallen for Linda. Nobody knew where she was.

I had been woken that Friday morning by large, noisy, diesel engines. Presuming it was workmen about to start drilling in the road, I covered my head with bedclothes, obstinately attempting to stay asleep and expecting my attempts to be shattered by the vicious sound of a pneumatic drill. It almost worked, for about five minutes but the noise was persistent and nasty. I lifted the duvet for air and smelled smoke. Out of bed faster than an earthquake, I looked out of the window. Three hours sleep and a mild hangover from a great night out with my two sons did not need the surveyance of chaos flinging its sticky fingers at me when I opened the bedroom curtains.

Fire Fighters, like ants around jam, were tackling the blazing house across the road. Instead of the usual nose to tail cars parked along this built up, residential street of Victorian houses, I counted five fire engines and three ambulances. Police were directing residents to move their vehicles and, as I looked down, noticed a female police officer about to knock on my door. Dressing quickly, I grabbed the keys to my van and left by the back gate. A police officer moved it just around the corner on request, wholly on double yellow lines and partly on the pavement. It would have been easy pickings for PC Jobsworth to nick me for still being over the limit. Paramedics were laying kit onto large green sheets outside the houses on my side of the street, the even numbers. The burning, smoking house was number 41. Giant yellow, wax crayon, oxygen canisters with face masks beside each one lay waiting on more green sheets. It all looked very over the top. Only one woman lived in the house. One woman and floor to ceiling, wall to wall junk in every room, including the loft cavity, hampering the progress of the fire crews.

They were still there, along with news crews, when I returned from an appointment in mid morning and it looked no less busy. The stretch of road where the burning house was had been closed off. A sole police officer patrolled the blue and white tape, preventing unnecessary foot traffic from passing and asking for permission to return home added to the cloying atmosphere. Fire Fighters had begun strapping on harnesses and were going to attempt to enter the house through the roof cavity. The female resident was known as a loner who rarely went out during daylight hours and her house was crammed with years of accumulated junk, hampering the search and, equally as urgently, the attempts to bring the blaze under control. Artificial tunnels had been dug through the clutter to enable progress into the house.

By lunchtime, the story was in the online version of two local papers and BBC Radio Derby. Living in my town, on the Derbyshire side of the Nottinghamshire border, when a good story broke, it hit the headlines across two counties. Neighbours were interviewed by film crews from East Midlands Today, their sound bites re-quoted in the local press. Disturbed by the noisy activity, getting down to serious work was hampered and my frequent coffee breaks were taken outside over short conversations with the emergency teams. A strange picture began to emerge of the woman and her lifestyle, pieced together with morsels of information gleaned from these brief meetings. She was reclusive.

This is a reasonably friendly neighbourhood. People pass acknowledgements while taking out or bring in wheelie bins, or by their cars, as one person comes and another goes. As the years go by, more people with cars move onto the street and parking has become very difficult, especially as quite a few households have more than one vehicle and only two houses within sight of mine have driveways. The family living next door to the one on fire irritate others of us by leaving their brown wheelie bin in the road when they go out. The elderly widower next door to me can be grumpy and unfriendly; we have three same sex households within a few doors of each other and a young couple nearby live with their small son. My son and I had been in kick boxing classes with the mother a few years earlier, when she was single and lived in the next street. The family next door to me have had two sons since moving in and wanted to move to a house with a bigger garden. Their house was taken off the market a month earlier as there had been a shortage of viewers. One property, diagonally opposite mine, is much more modern than the rest. At around 40 years-old, it is reputedly owned by a former England goal keeper who had played for Nottingham Forest during their late 70s peak. The days before top footballers commanded ‘silly money’ and who bought detached houses in streets like ours. A regular neighbourhood with ordinary people living on it.

Even though I have lived opposite her house for over eighteen years, we have never spoken. Everyone was invisible to her. Any attempts to catch her eye, nod, smile, or make any acknowledgement were ignored yet she did not look unfriendly. She was a slightly built woman who still wore the loose fitting and wild coloured trousers of a sixties flower child. There was something remote and eccentric about her. Rarely seen out during the day, she could often be seen silently watering the front garden in the middle of the night. The shrubbery, which had been none existent when I moved in, had grown to cover the front ground floor window. At some point, she had moved wardrobes across the front bedroom windows. A man lived with her then but nobody had seen him for years. It was her husband and he had been working in Spain, according to one of the police officers I questioned. The door to door enquiries were repetitive: everyone knew who she was, nobody knew her name and she was reclusive. Three hundred years earlier and she would have been the village witch, burned at the stake. She became a real person, a missing person, when her name was revealed in the local newspapers. Linda Parkes.

The fire was out; two council trucks and a dustcart moved in to begin clearing the vast amount of debris. Everyone said the same: ‘Never seen anything like it.’ Not only could Linda have never thrown anything away at all, she must have also actively brought in more of it. When my friend moved out of number 44, he had a house sale; like a garden sale without the garage. He opened his front room for the day and sold off books, CDs and some old vinyl and was the only person I know who had spoken to her. She was, apparently, very intelligent and nice to talk to. Whatever she bought that day much have been among the charred debris being wheel-barrowed into the white trucks. My daughter said she could be hostile. Felicity had worked at the local Cooperative store for some years, as a supervisor. It was her student job, which she did very well at. She told me that Linda, or ‘that weird woman who lives over the road’ would dispute the prices on reduced goods and make the staff go and check. Then she would spend a while counting her change to make sure it was right, blocking access for other customers.

I escaped from the chaos that evening by sharing drinks with a friend seven doors up. We talked, over wine and then tequila shots about everything and nothing at all, as good conversations often go. The street between our houses was deserted. The police tape had been removed yet nobody had brought their cars back. A lone patrol car was parked outside Lind’s house, two officers inside keeping themselves warm. The purr of their car’s engine was the only sound the now eerily quiet street. It was what woke me up the next day, when more police cars arrived, along with a forensic support van and more masked and overall clad officers working from a Mercedes Sprinter van. Local residents were carrying on life as normal, often questioning the team working in the house, as I also did. Cars began to repopulate the street but the atmosphere was cloying, oppressive and dark.

On Sunday morning, two large skips were delivered, taking up parking space all over again and the forensic team carried on, clearing large amounts of debris from the house. My son was going out that afternoon and would be away until Monday afternoon. It would be good for him. The neighbours had been around to the back of Linda’s house with cameras and it was winding Martin up. Seeing so many people, who never had time for her while she was alive, now seemed enthralled by the whole drama. I decided to catch up with a friend in a village in the Derbyshire Dales. Fresh, clean air and a change of scenery was to prove an excellent antidote to the sickly smell of old fire smoke that hung around by the skips. It stuck in my throat as I spent a few minutes talking to one of the forensic officers before leaving. He had spoken to Linda’s husband that morning, he said, but denied there had been any rubbish in the house. He said he had been there six months earlier and there had not been any junk in the house. Astonished, the officer told me he could not believe the husband’s denial. He had missed the bags of human excrement in the house? He shook his head and was gone by the time I returned home.

I get up at around 6.30am for work on Mondays and saw, that week, a bicycle propped up between the skips. A thin man in a dark duffle coat and pull on hat was shining a torch in one of them, then the other. I watched him from my bedroom window. It is not unusual for passers by to peer into parked skips but this man seemed intense in his search. He then began poking through a pile of rags in the front garden. He was still there when I left for work just before 7am so I wandered over.

‘You won’t find much in there, lad,’ I said. He was back at one of the skips by then and did not even look up.

‘She was my best mate, she was,’ he replied, ‘a lovely woman. Her husband’s going to be heartbroken when he sees this, he is. She was with me till half past two that morning and as happy as anything. I walked her back round here and we were laughing and joking all the way. The police have said I’m a key witness. I’ve managed to find a couple of necklaces in there,’ and pointed to the rags under the front shrubs. ‘I just wanted something to remember her by.’

I left him to his search and went for the train.

Linda’s body was discovered at 11am that day. She had been buried under the junk for three days. According to a report in the Derby Telegraph, she had been trying to escape.

Over the next two days, a few flowers and messages were left on the wall between her house and next door, where the guy who had been interviewed by news reporters on Friday lived. The same one who had often complained to the council about the vermin and mess and who had first alerted the fire service on the Friday morning. People have to pay their respects. It had hardly seemed so when they were peering in the house, taking photographs or making sniped remarks in the online version of the local paper.

People are often unaware of the powerful impact they have on the lives of others. Linda had that effect. I would not leave flowers. It seemed a sick gesture, given that she died unable to escape from the chaos in the house. Why add to the clutter?
What was most moving was the metaphor between the obvious physical mess at the house and the assimilated internal chaos of our reclusive neighbour. We all carry burdens, clutter, and emotional baggage; call it what you might. Not one of us goes through life free of issues but it is how we take control of them that makes the difference. Linda clearly could not deal with her internal or external junk and it was the death of her, quite literally. There is a profound lesson to be learned from Linda’s life and indeed tragic end, which would not be to leave it too late to address problems before they get too big. It is possible, as Linda proved, to live hermit-like, even in a densely populated area such as mine. However much we shun social contact, our lives do affect those of others. Our personal burdens whether physical or metaphoric, impact on other people and people care. On whatever level, whether it is out of desire not to live next door to so much junk, noise or bad smells or a wish to help the clearly suffering individual.

Three weeks on and the house is boarded up. The police and emergency vehicles have been replaced by occasional men in vans, sifting through the remains of the junk. One of them looked like Linda’s husband, who has been seen at the house, his Peugeot estate car parked opposite my house. Everything that remains of Linda’s life is being slowly brushed away. May she rest in peace and the lessons learned from her remain. The unaddressed issues we all have, ignored and neglected in some foolish hope they will simply melt away, can wreak devastation to more people than we could ever possibly imagine.

A Poem About Being Autistic - for James who may understand, one day.

2010-12-28T17:06:00.000-08:00

I originally wrote this in mirror writing, a skill at which I am now something of an expert. Reading it without holding the back of the page to the light, to get it the 'right' way round, makes for somewhat stilted reading but I think adds to the overall, monotone, impact.

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

I like clothes with pockets
so I can keep my things
all of them
all of my special things
in one place
so I know where they are.

You told me about the girl you met
and the story she told you
about the boy
who kicked over chairs.

He was autistic, you said.
When things got too much
for him at school,
he kicked over chairs.

He was LFA,
low functioning autistic.
I am HFA,
high functioning autistic.
What is the difference?
The difference between
HFA and LFA
is that LFA are more honest.
If things get too much
they scream
or kick over chairs
or hit someone
or run away.

HFA people are just better
at pretending.
We teach ourselves to smile
in all the right places
at all the right times
but we still don’t fit in and
inside we are screaming.

Oh, if you knew the rage,
if you knew the rage
that makes us
kick over chairs
or kick holes in walls,
you would be merciful.

I think LFAs are lucky.
they are no words, all action.
NO WORDS, ALL ACTION.
If they don’t like it,
they kick over chairs.

Being HFA,
or Asperger’s,
is like living life
on the red carpet
or the Hollywood walk of fame.
Everyone is looking at you,
or laughing
and saying things
you don’t understand
because you are different and
don’t know why and
inside you are screaming
and kicking over chairs
and killing people
or yourself
and running away.

Which is why
I like clothes with pockets
so I can keep my things
in one place,
my special things,
so I know where they are,
when I run away.

Sebo Felix Pet, my new vacuum cleaner

2010-10-11T12:46:00.000-07:00

I hate housework, I have to admit but my new Sebo has been the best vacuum cleaner I have ever bought.

Having two dogs and four cats means the carpets get, er, matted, which is why the Sebo Felix Pet was such a great choice. The attachment head for stairs and pet hairs actually works, unlike those on previous cleaners which clog up and leave the brush unable to rotate. Even though the cable is shorter than I am used to and I have to stop half way down the stairs, carry the Sebo down and then start again from the bottom, it is still quicker and more efficient than previous rivals.

Its black and silver colour and racing car styling appeal to my 16 year-old son, who now quite often takes it upon himself to clean the living room carpet. Admittedly, it was he who dropped my now deceased old pet vac down the stairs within weeks of purchase. It spent virtually the entirety of its short life stuck together with brown parcel tape. It was after he accidentally threw away the cyclone filter that it sucked its last.

The great edge cleaning means it is not always necessary to use the crevice tool to clean along the skirting board. The head swivels to make cleaning around furniture really quick and easy but it has to be tried to be fully appreciated and the removable bags last for ages. I was very sceptical when the shop assistants told me this because the replacements are quite costly. However, even with as many furry friends as we have, the bag has only been replaced twice and I suspect the second time was my son's overkeeness.

My Sebo came with a detachable head for hard floors and a box of powder carpet stain remover. The only downside to this fabulous piece of German engineering is the lack of either onboard storage space for the additional heads or something to put them in.

Although it is more expensive than others on the market, it is lighter, more efficient, takes up less space and is wonderful to use. The side carrying handle makes it easy to take upstairs so, hopefully, my new Sebo Felix Pet won't suffer the fate of the last vacuum cleaner.

Supporting Statement I read at my interview.

2010-08-17T14:09:00.000-07:00

I have written this in case my responses to your questions become lost in my labyrinthine, autistic, rainbow head.

You say the NAS actively encourages people with autism to apply to work for them. It is my sincere hope you will seriously consider my application today. You will never regret it. I have a great deal of understanding and compassion for those on the autistic spectrum. I promise you today that my commitment will be both to your amazing organisation and those you seek to serve.

I am an individual with the strength of character, integrity and tenacity to overcome the kind of hurdles and prejudices, personal difficulties and misunderstanding that nobody should have to live with. I am not the kind of person to go the extra mile, but one who will go as many miles as it takes to achieve a satisfactory outcome.

Being a university student opened many doors for me. One of the most memorable was attending the National Autistic Society 2008 International Conference. It showed me the direction my life and career should be taking, which is to work with and for the National Autistic Society. Only one of the main stage speakers, Stephen Shore, was on the autism spectrum. I would like to add to that number. To steal one of your campaign titles, don’t write me off. To steal another one, I exist. But, you know, I’m going to do more than exist, I’m going to go out and win.

Five years ago, it was the NAS website and helpline which enabled me to self diagnose my Asperger’s syndrome. It gave me the tools to approach my doctor for a formal diagnosis but, more than anything, it gave something for me to approach my youngest son’s school with. Autism runs in families, as you know, and Martin was no longer either just a naughty boy or the product of inadequate parenting. Even though Bruno Bettelheim’s ‘refrigerator mother’ theory has long been discredited, misunderstanding, ignorance and prejudice still exist. I cannot imagine anything more rewarding than working with the National Autistic Society, to raise autism awareness in society and empower my own people to achieve dignity, respect, admiration, employment, education, successful relationships and the brightest of futures.

The NAS has run some remarkable campaigns, one of which gave rise to the Autism Act, while your current campaign, You Need to Know, is fantastic but perhaps could have included adults with autistic spectrum conditions. Mental health problems do not go away with age and sometimes they can be compounded by late diagnosis and the frustration of trying to communicate with a world that does not understand or whose preconceptions fail to recognise that difference is okay.

Looking ahead, it would be wonderful to see the National Autistic Society run a campaign called If I can, You Can, led by people on the autism spectrum, for people on the autism spectrum. Why? To enable spectrumites who have achieved, to inspire those who want to but may be unsure where to start. It would help parents realise their autistic children can do so much, can live independently and enhance the communities in which they live.

If you appoint me to the position of University Support Mentor, I hope my example and inspiration will communicate just this: If I can, You Can.

my son talking about autism

2010-05-19T04:17:00.000-07:00

standup4Autism

2010-05-11T14:17:00.000-07:00

standup4Autism

Does it make you want to read the essay?

2010-05-01T01:55:00.000-07:00

It was Shabbat and I was trying to sleep. My applied project had been a work in progress forever, it seemed and I was determined not to tweak it anymore. I had had been looking over my personal reflection until late the night before, sculpting and shaping it, still not understanding what it was supposed to actually do. I got up and made a large glass of detox tea and stood in my sunny garden. Whilst trying to dig out bits of stuck breakfast, superfood seed mix, from between my teeth, the Eureka moment hit me; an instant of, ‘By jove, she’s got it.’

Why had nobody actually explained that a personal reflection is the same as the preface to a book? The forward? The introduction? The frustration, married with relief at finally having the penny drop made me decide to rewrite the whole bloody lot. It was 8.45 in the morning and I had ninety minutes to bung a few thoughts down before picking Nick up and spending the rest of the morning in synagogue. There was an element of moral responsibility and I wondered if I should email all the students who had agonised over theirs and had borrowed my last one and excitedly tell them, ‘It’s an intro, guys.’

Let me preface my essay

Using my dad as the subject of this assignment should have been easy but it has been an angry lion to wrestle in the darkness with. Sometimes it felt as though something had crawled into my heart and died. At other times, memories like the warm smile of sunshine stroked my cheeks.

It has been a reflection on my life and how it has interwoven with that of my dad. I wrote what I hoped would be an honest tribute to victory over his demons.
My father was reborn, to become the high as a mountain and wide as the sky dad I remembered as a child. He was going to sell a book and I was going to be leather jacketed, a motorcycling, journalist bombing around, digging up fantastic stories.

In December last year, I was in an Oxford pub, the Lamb and Child with author Philip Pullman, discussing books and how he wrote. I asked if he’d ever considered writing an autobiography, as his right to reply to his critics. No, if he wrote anything like that, he told me, it would be more in the form of a memoir. He suggested I write a book but my response was I would not want it to look like misery lit. ‘Then make it happy lit,’ he’d said.

If this essay is to be considered as one chapter in a book, I would like it to be seen as balanced lit. Honest, candid and worthy of both tears and laughter. That would be a very accurate memoir. I hope not to have evoked any feelings in the reader of bitterness and anger towards my dad because that would be false. I have nothing but admiration for a man who has turned into a role model of mountainous proportion.

I write about having two dads and this is often how children of addicts describe their suffering parent, whose torment ripples across the whole family and often to the community and wider society. One person can cause so much devastation for so many.

I remember the terrified child, frightened and crying, held hostage in the kitchen by the night time dad with his flailing arms and drunken rants of how the world would end when Russia went to nuclear war with America.

I remember line of one of my favourite songs, Bridge Over Troubled Water, written by Paul Simon:

Sail on silver girl, sail on by. Your time has come to shine. All your dreams on their way. See how they shine.

And I hope they will.

They bring me to another junction, where, in my mind, I check my map and look up. There is a mountain enveloped in clouds of uncertainty and incredible adventure. I look down, over an eye wetting landscape of both beauty and trauma. Treetops, valleys, lakes; the sea in the distance, reflecting the sun; cattle grazing and lambs, playing Batman or Power Rangers. I wish I could print photographs of those pictures. Maybe that is something far higher up, where the sky is always wilder than motorbikes, leather jackets, journalistic aspirations and innocent, childish dreams.

References
Page, R. The Presence a memoir of miracles. 2010. O Books, Ropley, Hants.
http://www.alcoholics-anonymous.org.uk/
http://alcoholism.about.com
http://www.apas.org.uk/index.htm
http://www.drinkaware.co.uk/

Country diary of an Edwardian Lady meets the 21st Century

2010-04-22T14:16:00.000-07:00

I was trying to explain to my dad how the university system works in England, through the eyes of a mature and autistic student. Some knowledge of the names given to pre-decimal coinage would help. Here is an extract from the email I sent.

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

Now for the lesson in how higher education works in 2010. Nobody, by the way, gives you a glossary of terms. They must either assume you know or you'll have to work it out for yourself.

Module: in old money is a subject or topic. Whilst my degree is BA (Hons) Journalism Studies, we have different modules to complete within it. Some are elective and others mandatory. (I don't think I have to explain the difference to you).

Semester: American (shudder) for academic term.

We have three modules (subjects) each semester (term). For me, at the moment, it is 1- applied project* or dissertation (I still don't know what one of those is) which is mandatory. 2- Journalism Professional Practices. Mandatory. 3- Sexuality and Culture. Elective.

*My applied project is you, dad.

The JPP is a horrible, autism hostile, module I would never have chosen because the unwritten rules are endless.

My one elective module is Sexuality and Culture. How this relates at all to journalistic anything escapes me but going to uni on Friday afternoons and talking about sex is actually quite a refreshing change. Just when you think you have been there and done that so many times you wish you had bought the t-shirt factory, rethink. Experience tells you to hide your hands in your armpits when you really want to throw at least one in the air and say, 'Miss? Miss? What's rimming, miss?' And dominatrix? Well, I used to love the double five. That was my favourite. Oh, sorry, I was thinking dominoes. Must be getting old. Do you think shove ha'penny means something rude these days? I mean, you can't say 'pussy' without setting a 13 year-old off laughing. As if anyone these days knows what an ha'penny is. I dread to think what they'd do with a tanner. Old money; old people; And there was this girl who said one of those deeply meaningful things that began with well, twenty years ago.... and I missed the rest of it because inside I was falling over laughing. How did we forget that sex was invented by teenagers and copulation is the number of policemen down at the local nick?

As for home study. You could call it research or homework that nobody sets but our written work is telling on how much we have done. In my case, not necessarily very much. There is something of an art to producing a piece of work which ticks all the boxes but is just outside of the experience of the marker. For instance, last year, I did a piece for the module called 'Investigation and Research Skills' and missed out loads of quite important information because our module leader (teacher) had never been to an Alcoholics Anonymous meeting. It comes in handy, being old. You realise that grown-ups don't know everything and a lot of the others still look at the module and course leaders as grown-ups, somehow bigger than they are. They are like puppies, trying to sound profound, eager to please. My advantage is in being more mercenary now. I ask what gets marks and have taught the relevant few how to break down information into comprehensible bullet points. The dog has taught its master how to bark.

Plagiarism is something of a media panic. It is far harder to achieve than most people outside of univeristies think and has been going on since Adam were a lad. There are computer programs which essays can be run through that throw alerts up when something looks as though it has been copied and pasted from a website. There must have been youngsters copying, long hand, huge chunks of stuff they fished out of text books ever since Gutenberg created the printing press. Just as youth insists it invented sex, so its impudence assumes the ignorance of the old.

But I still laughed behind my hand when I read the word crap in a recent edition of The Oldie.

I'll get back to my essay now.

Image courtesy of www.cartoonstock.com

Personal reflection on my Final Year project piece

2010-04-10T16:25:00.000-07:00

Dave, who I mention in the piece, is my supervisor and has been just brilliant. I had been at home, absorbed in learning an extract of the Kaddish in Hebrew when I received an email from our course leader, Sue, saying I had not submitted the personal reflection or a CV I needed for this module. Yet they gave me a chance to write one and get in by Monday. This was Friday lunchtime and I work all weekend. The task looked and felt impossible. I threw this together on the train from Long Eaton to Sheffield and back and got my best ever mark for it (78%). Here it is, in full.

..................

In his poem Buttercup Days, AAMilne wrote:

What has she got in that little brown head?
Wonderful thoughts which can never be said...

This is probably the best appraisal of an autistic mind I have come across. Succinct and unambiguous.

My original idea had been to write about aliens and autism and life on the periphery of society; to discover whether or not there could be anything to substantiate the belief of some people that aliens have visited earth and deposited various offspring among the human populace.

Following a much anxiety and procrastination, Dave and I decided my project would be on Obsessive Compulsive Disorder and Asperger’s syndrome. His suggestion was, in fact, Gary McKinnnon but we thought it a good idea to widen it. It was a traumatic personal journey which uncovered even more aspects of a difficult life to acknowledge.

My intention, in consultation with my supervisor, was to write a balance of first hand insights with other printed material, which I felt I achieved without becoming self indulgent. The outtakes were fairly epic in proportion to the submitted piece but there is an awful lot to filter in my ‘little brown head’.

Living in a foreign culture and speaking an alien tongue is pretty hard going but what I have most of all hoped for is that one, elusive, piece of work; that wonderful window through which everyone will suddenly be able to see and understand an autistic mind in all its rainbow glory.

Gary McKinnon epitomises everyone’s dread of being left stranded, abandoned and misunderstood. Up Shit Creek without a paddle, to use a vernacular expression. Simon Baron-Cohen threw a life line, recognising McKinnon’s autistic traits during a television interview and he has been doing his utmost to help this man since. So have many other people but those of us care about individuals and their right to be heard and understood can only sign petitions, write to Members of Parliament, and hope.

I tried to explain the reason behind autistic ‘strong interests’ and how they can become obsessive. This does not necessarily mean OCD, which I discovered during my research. It seems to be whatever is going on in little brown autistic heads that turns obsession into obsessive compulsive disorder. Egodystonic thoughts, as Tony Attwood called them. It hardly expresses the terror and rigid fear these not-so-wonderful thoughts bring with them. Even though my mentor quite liked what I’d written and a friend complimented it when I put it on my blog; even when I submitted a pitch to Communication, the magazine of the National Autistic Society and they expressed an interest in publishing it, I felt I had ‘bombed’. Nothing seemed to adequately capture and tame that wild firework display of thoughts and emotions.
Then to go through the trauma of checking, rechecking, sweating, crying and swearing over it, it was handed in. But I was so focused on the piece of work itself I either forgot or did not notice the personal reflection and CV, which also needed to be completed and handed in. Very fortunately, the teaching staff gave me the chance to write and submit it, which is where I am now, clutching at oars from the man in Shit Creek Paddle Store. Crying all over again at the two fighting factions in my head. One is the voice of my mother, whose blazing furnace of a mouth was telling me I’m no good and will never amount to anything. The other fights that furious, angry, fire with water, an ocean of affirmation that allows us to stuff up and yet be given a chance.

This is why I understand Gary McKinnon. His raging obsession burned so hard and furious he was incapable of seeing all those other really important issues surrounding his hunt for alien life and free energy.

Maybe Gary McKinnon’s mute shout will be heard and he will be freed.

One day, perhaps, those ‘wonderful thoughts’ of Buttercup Days, which are locked inside the glass wall of my mind, separating our worlds, will find a window and be adequately able to communicate.

Obsessive Compulsive Disorder and Asperger’s Syndrome

2010-01-13T02:41:00.000-08:00

It must be remembered that people with Asperger’s syndrome (AS), as it is with anyone on the autism spectrum, have difficulty making and maintaining friendships so therefore have little or no benchmarks upon which to judge their personal experiences and feelings. Asperger’s syndrome is not a ‘mild’ form of autism. It is a form, and brings its own set of difficulties. The privilege my Kanner’s cousins have is to say nothing and throw a tantrum. I am cursed with speech, constipated by it. I must, to the death, voicelessly scream to be heard.

We are labelled egocentric. Ours is a self created world, where the individual on the autism spectrum can live without fear or confusion. It is conducting our own orchestra so that all the different aspects fall in to a manageable tune. There are few people who, in truth, do not prefer to maintain a high level of control in their lives. Typically, most like to plan their careers, holidays, children’s schooling, where they live and how they spend their money and free time. For people on the autism spectrum, life can be a labyrinth of stress, conflict, confusion and culture because, although born on this planet, its habits, customs and language are alien.
Asperger’s syndrome is not a mental health issue. Along with other autism spectrum conditions, it is neurological. The brain is wired differently from that of most other people. We are not Asperger ‘victims’, as newspaper headlines suggest. We are more likely to get mental health problems, such as depression, because the world can be so 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, or non at all. Nobody would dare to suggest a blind person was ‘victim’ to sight loss, or a wheelchair user ‘victim’ to mobility problems. 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.

When I began to look at the relationship between obsessive compulsive disorder and Asperger’s syndrome, I never expected to find anything as traumatic as Tony Attwood’s description of Obsessive Compulsive Disorder: ‘In OCD, the person has intrusive thoughts he or she does not want to think about: the thoughts are described as egodystonic, ie distressing and unpleasant.’
‘Distressing’ and ‘unpleasant’ are sanitized words that in no way express the devastation experienced by those whose autism causes so much suffering. Even very small diversions can be intolerable.

When I became pregnant with my eldest son, now 26, I became terrified of dying. Against a background of high media profile CND (Campaign for Nuclear Disarmament) activity, coupled with having been brought up as a Quaker, who are traditionally pacifists, it fed my deepest fears. Crossing the road became an ordeal. What if a car came ‘out of nowhere’ and killed me, and my unborn baby? Life revolved around listening to the hourly news on the local radio. I would wait, coat on and ready to go out, feeling physically sick with fear, for a news bulletin saying someone, somewhere, had pushed the red button to launch us all into oblivion. It did not help that we lived a mile from both an army base and motorway and eight miles from an airport. All of these were realistic targets for nuclear attack, according to CND propaganda. This was how life was until we moved house, when my son was 18 months old.

Attwood goes on to explain that typical people obsess about ‘cleanliness, aggression, religion and sex’, whereas in children and adults with Asperger’s syndrome, their thoughts concern ‘cleanliness, bullying, teasing, making a mistake and being criticized’.

It is worth noting that cleanliness is first and foremost in both of Attwood’s lists. We may think OCD starts and stops with obsessive hand washing, house cleaning or performing tasks in exactly the same order, at the same time of day. The second words in Attwood’s lists are ‘aggression’ (typical) and ‘bullying’ (autistic) which is interesting because they are both very obviously related, yet somehow different. Aggression is generic but bullying is very much more personal. Aggressive is rarely, I would suggest, either a word or term directed at the self, by the self. Who ever says, I am feeling aggressive towards myself? Bullying is very much from one to another.

As someone with Asperger’s syndrome, it is quite easy to identify with the latter list; and also the former, because Tony Attwood does not include religion or sex in autistic obsessions. Anything can be obsessed upon. Whilst age and experience deal with most of the above, it is important for people involved with AS adults that it is by degree these issues are conquered or, at least, controlled. It is useful for anyone to understand these difficulties, differences, disabilities, exist. We learn to cope but not necessarily recover.

One way of doing this is by absorbing ourselves in an area of special interest. For some, and I mean specifically those on the autism spectrum, they can lead to employment, or a resource to making friends and meeting people. As many spectrum people find socializing very difficult, it helps to have interests that bring them into contact with like-minds. They may be obsessive and compulsive but would not be diagnosed as having OCD because their interests are pleasurable, an escape and a way of building social networks and friends.

Author Daniel Tammet first came in to the public awareness in a 2004 television documentary. Called The Boy with the Incredible Brain in the UK, it showed how Tammet, a man with both Asperger’s and savant syndrome, broke the European record for reciting pi to 22,514 digits. He is a linguist and teaches French and Spanish through online courses. Now the author of two books, Tammet has built a successful career out of his special interests and obsession with numbers. As a child, he had no friends so invented one of his own. In his book Born on a Blue Day, Tammet describes Anne, as he imagined her name to be, in great detail, from her height – he pictured her to be very tall- to her clothing and gentle tone of voice.
Dr Liane Holliday Willey also has Asperger’s syndrome. As doctor of education, she specializes in the area of psycholinguistics. Willey developed an obsession with language at high school.

‘Words and everything about them,’ she says, ‘hold my concentration like nothing else.’

She enjoys their shape and the way they can be moulded into ‘precisely what they should’. As someone who often struggles to make conversation, the written word offers the opportunity to express thoughts and ideas that spoken language cannot. Like Tammet, Willey also had imaginary friends.

Ten year-old Kenneth Hall, who has AS, wrote a book describing his life and family relationships, discussed things he enjoyed and others which he found difficult. He has invented his own ‘world’ and calls it Gaelica. In his book, Asperger Syndrome, the Universe and Everything, Kenneth says this: ‘Gaelica is better than this country because there is peace there. In Gaelica I am king but I am not superior.’
Hall, Tammet and Willey have all found ways to cope with stress and lack of peer relationships through fantasy worlds, imaginary friends and obsessive interests. Tammet is even inventing his own language, Manti.

Tammet loses himself in landscapes of his mind that visualizing numbers gives him; Hall has Gaelica and Willey her love of language and adolescent fixation with America’s wild west.

My eldest son went through patterns of intense interest as soon as he was able to toddle around the local library and choose his own books. He went through various passions, from space travel, reptiles, spiders and snakes, heavy plant machinery and farming. Fiction never interested him very much, which is typical of a child with Asperger’s syndrome. Once he had absorbed as much information as he could on one topic, he would drop it and move onto something else, without ever looking back. It was as though his prior passions had never existed. He was also extraordinarily dextrous with his hands and became obsessed with painting Citadel miniature figures. He rarely played with them but took great pains to add minute detail to the characters. On eyeballs no larger than a pin head, he would paint red lines on the corneas by using a single hair from a paintbrush. Like his younger half brother, Oliver resisted making peer group friends and was often in trouble at school on account of his odd and often violent behaviour.

Martin, the youngest of my three children, has left his obsession with cars behind and is now making friends through his new love: the skinhead scene. He has carefully researched the roots of the culture and is currently building an impressive library of ska and reggae music. He has attended events, nights out and gigs and has helped to organise functions of his own. Through his interest, he has travelled around the country and co-moderates skinhead internet forums. On his Facebook profile, Martin, who calls himself Ron, says:

‘I'm a skinhead nor more no less, i like my reggae and ska along with soul, non racist OI and some punk. I also like drinking beer going to do's and having a laugh with mates

A skinhead is a skinhead and a racist is a racist!’ (spelling and grammar his own)

For people with autism spectrum disorders, special interests can provide positive opportunities, careers and escape, for some they may become more sinister and harmful. These interests are very different from obsessive compulsions. Reflecting on the egodystonic aspect of Obsessive Compulsive Disorder, when the ‘special interest’ tips over into an all consuming terror, it inhibits one’s ability to function normally.

Gary McKinnon

At this point, it may be useful to look at a very high profile case, regarding a man called Gary McKinnon. He hacked into the US defence system to look for evidence of extra-terrestrial life and free energy.

He was diagnosed with Asperger’s syndrome after Professor Simon Baron Cohen, of the Autism Research Centre in Cambridge, saw a news report on McKinnon, identified his autistic traits and invited him to Cambridge, where an official diagnosis was obtained. He believes that McKinnon is very likely to commit suicide were he to be imprisoned in the US.

Many people on the autism spectrum would immediately identify with McKinnon’s state of mind and agree with Baron Cohen that his motives were altruistic. What Baron Cohen may fail to appreciate is the absolute intensity of McKinnon’s fears.
Let us look at why Gary McKinnon was ‘obsessed’ with UFOs, free energy, and, perhaps, (US) national conspiracy. He possibly felt he did not ‘fit’ into normal society. My guess is he was looking, among other reasons, for himself in his search for extra terrestrial life. A very high proportion of people with ASDs, like Gary, feel they must be from another planet so it makes sense to go out there and look. His lack of imagination, which is one of the diagnostic criteria of anyone with Asperger’s syndrome, did not appreciate the outcome and trouble he may have caused. It is very common for people with ASDs to describe themselves as ‘alien’. It explains their detachment and lack of belonging in the wider community. Once an idea has been planted inside the mind of an autist, as I call them, it is incredibly difficult to get away from it. Obsession takes hold and egodystonia takes its suffocating grip. Absolutely nothing else matters and perspective ceases to exist. Autistic people are very literal. It is an absolute in the black and white mind of the autist. Eating, washing, work, social connections, family, time, relationships and even going to the toilet are irritations that need to be attended to.

Professor Baron Cohen says:
‘Tragically, this narrow attention-to detail, and relentless pursuit-of the truth, together with his (McKinnon’s) reduced social awareness, has led him to act in a way that has brought him into serious trouble.
‘It is important to recognise that his emotional age or social intelligence is at the level of a child, even if his intelligence is systemising at an advanced level.’ (Daily Mail 08th July 2009)

McKinnon’s deep seated interest became obsessive.

McKinnon exchanged his paid job for a full-time hacking career, he stopped washing, became nocturnal, ate rarely, smoked marijuana and spent all day in a dressing gown. (Sunday Times, August 2, 2009).

McKinnon’s alien thoughts had taken over. He was compelled to find out if there was ‘life out there’ and what, he was convinced, the government of the United States was hiding. His mother, Janis Sharp, says, in an interview on BBC Breakfast Time, ‘passions become obsessions’ and that ‘people with Asperger’s tell the truth even to their own detriment’ .

Has anyone in the media sought opinions from another Asperger’s syndrome ‘sufferer’? Whatever happened to the balance we are taught to seek as journalism students?

In my experience, it seems that the neurotypical (non autistic) world needs to segregate, or pigeonhole, certain traits. It is far easier to slap on a label, from ‘unique individual’ to ‘alternative’, ‘eccentric’, ‘weird’, ‘geek’ or tags far less flattering but too numerous to mention. Worse still are those awful preconceptions that, like fallen boulders, we somehow have to crawl out from under. This is the attitude that Gary McKinnon is facing from the US Government. They have decided that his actions were indeed malicious and will not consider the altruistic motive that Professor Baron Cohen describes.

Dr Temple Grandin, autistic, author and the designer of one third of all the livestock-handling facilities in the United States tells a story of a young man called Tom McKean in her book Thinking in Pictures.

‘(He) became frustrated ...... because the professor flunked him for finding a better way to write the program.’

She goes on to say ‘A more creative professor would have challenged him (Tom) with more interesting and difficult program writing.’

Gary McKinnon’s biggest crime may well have been his ability to make the computer defenses of the US Government look stupid. It is purely arrogance on their part to choose a vulnerable, naive yet genius of a man to make an example of. He has not been the only person to successfully ‘hack’ into their computers and other prosecution and extradition attempts may yet follow.

What can the rest of us, Autism spectrum people that we are, hope for? Greater awareness and understanding of the motives, passions and obsessions of the misunderstood race that struggles so much to find a place. Perhaps, if and when this is achieved, we can set aside our fantasy world and take thrones in this world, where our frequent mental and emotional maelstroms finally find peace.

A Modern Day Christmas Fairytale

2009-12-23T17:33:00.000-08:00

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

2009-11-27T09:31:00.001-08:00

..... 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

2009-11-22T12:34:00.000-08:00

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.

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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

2009-11-18T03:26:00.000-08:00

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

2009-11-15T09:37:00.000-08:00

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)

2009-10-20T11:51:00.000-07:00

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

The Artificial I (this is a poem)

2009-10-20T11:42:00.000-07:00

(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

2009-10-13T04:24:00.001-07:00

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?

2009-10-08T18:42:00.000-07:00

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

2009-10-05T17:59:00.000-07:00

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

2009-09-22T01:50:00.000-07:00

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

2009-09-05T14:14:00.000-07:00

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.....

2009-07-07T17:56:00.000-07:00

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

2009-04-28T01:24:00.000-07:00

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

2009-04-16T08:18:00.000-07:00

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

2009-04-02T14:32:00.000-07:00

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

Darren McCormack – Journalism Course Administrator

2009-03-15T14:18:00.000-07:00

Darren McCormack recently took over as Journalism Course Administrator. Darren, 28, took up his position at Sheffield Hallam University in September 2008, as Course Administrator in Health and Wellbeing at the University’s Collegiate Crescent Campus. Before joining the university staff, he worked for Norwich Union in Sheffield, in occupational health and health insurance.

Why did he leave his former position?

‘It was a life decision. It took me away from my partner.I could work for up to twelve hours a day,’ he said, ‘there was a lot of responsibility, managing nurses in London and Birmingham.’

From the age of 15, Darren worked at Cranfield Management Development Centre in Bedfordshire, part of the university. He was cleaner, linen porter, banqueting waiter, chef, receptionist and barman during his ‘A’ Levels. He then progressed on to cruise ships, working for P&O as a Pursor and life raft commander. Sailing around the Amazon, Brazil and the Caribbean on six or seven months contracts with no days off, Darren would not take a cruise holiday himself but would work at sea again.

Darren works in Furnival Building from 9am – 5pm and welcomes students who wish to make contact with him. He can be reached at 0114 225 6718, or email d.mccormack@shu.ac.uk.

My dad, the author Robert Page

2009-03-05T14:42:00.001-08:00

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

2009-03-05T13:54:00.000-08:00

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

2009-03-05T13:36:00.001-08:00

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

2009-03-05T13:23:00.000-08:00

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.