KIM PEEK r.i.p.

Kim Peek: The 'Real Rain Man' dies

Kim Peek, the genius who inspired Dustin Hoffman's character in Rain Man, has died from a heart attack at the age of 58.

22 Dec 2009

Kim Peek in 2006

Dustin Hoffman (right) as Raymond Babbitt in Rain Man with co-star Tom Cruise (Charlie Babbitt)

Kim Peek was classed as a "mega-savant" and had memorised 12,000 books, including the entire Bible, but had difficulty with ordinary tasks like getting dressed and combing his hair.

His astonishing abilities included being able to read one page of a book with his left eye and the other with his right. It took him just eight seconds to read and remember a page.

He could also ask a stranger their date of birth, then tell them what day of the week they were born on, and what was on the front of major newspapers.

Mr Peek was classed as a genius in 15 different subjects including history, literature, geography and music yet still scored below average in IQ tests.

Script writer Barry Morrow was inspired to write Rain Man after meeting him in the early 1980s.

Dustin Hoffman went on to win an Oscar for his portrayal of a savant called Raymond Babbitt who, like Mr Peek, reeled off endless sports minutiae.

During his preparation for the role Hoffman met Mr Peek, who was then 37, and helped him to overcome his deeply introverted nature.

Mr Peek's father Fran said: "Dustin Hoffman said to me, you have to promise me one thing about this guy, share him with the world." With his confidence increasing Mr Peek later took to the stage, amazing audiences with his recall and enjoying being known as the "real Rain Man." In 2004 Nasa scientists began studying him using technology designed to assess the effects of space travel on the brain.

Mr Peek, who was a Mormon, died in Salt Lake City, Utah. In recent years he also showed an ability to develop and change, even overcoming his literal nature by learning to tell jokes.

Click on the link below

http://www.youtube.com/watch?v=G7kHSOgauhg

PAT.

Sometimes it's easy to forget that it's not just children who are with autism.
Young people grow up.
Become middle aged.
Grow to be elderly.



I worked for a nursing agency at various psychiatric hospitals for 3 years.
Pat greeted me, in her own inimitable way, on my very first duty.
Born into , (what was then), a mental asylum over 60 years ago, she had only
ever known lonliness, isolation, fear, cold and hardship.



She taught me to laugh . . . . and a whole lot more too.
Pat died at Christmas 2007.

Thank you Pat. I think of you this Christmas.

The two poems below are for you...with my love...and a smile.

What Do You See Nurse?

What Do You See, Nurse?
Or
Crabby Old Woman
or
Kate

(NOTE: This poem was reportedly written by a woman who died in the geriatric ward of Ashludie Hospital near Dundee, Scotland. It was found among her possessions and so impressed the staff that copies were made and distributed to every nurse in the hospital. Though it was addressed to the nurses who surrounded the woman in her last days, it cries for recognition of a common humanity...it could have been written to all of us).

What do you see, nurse... what do you see? What are you thinking - when you look at me:"A crabby old woman, not very wise;Uncertain of habit with far-away eyes,
Who dribbles her food and makes no replyWhen you say in a loud voice 'I do wish you'd try.'"
Who seems not to notice the things that you doAnd forever is losing a stocking or shoe;
Who, resisting or not, lets you do as you willWith bathing and feeding, the long day to fill.Is that what you're thinking, is that what you see?Then open your eyes, nurse. You're not looking at me!

I'll tell you who I am as I sit here so still.As I move at your bidding, eat at your will:
- I'm a small child of ten with a father and mother, Brothers and sisters who love one another;- A young girl of sixteen with wings on her feet, Dreaming that soon a love she'll meet;
- A bride at twenty, my heart gives a leap, Remembering the vows that I promised to keep;- At twenty-five now I have young of my own Who need me to build a secure, happy home.- A woman of thirty, my young now grow fast. Bound together with ties that should last.
- At forty, my young sons have grown up and gone, But my man's beside me to see I don't mourn;- At fifty once more babies play 'round my knee Again we know children, my loved ones and me...

Dark days are upon me, my husband is dead.I look at the future, I shudder with dread.For my young are all rearing young of their own,And I think of the years and the love that I've known.

I'm an old woman now, and nature is cruel.'Tis her jest to make old age look like a fool.The body, it crumbles, grace and vigor depart.There is a stone where I once had a heart.

But inside this old carcass a young girl still dwells,And now again my bittered heart swells;I remember the joys, I remember the painand I'm loving and living life over again;

I think of the years, all too few, gone too fastAnd accept the stark fact that nothing can last;So open your eyes, nurse, open and see...not a crabby old woman. Look closer... see me!

The Nurse's Response

THE NURSE'S RESPONSE TO THE OLD WOMAN (Author Unknown)

What do we see, you ask, what do we see? Yes, we are thinking when looking at thee.
We may seem to be hard when we hurry and fuss, But there's many of you, and too few of us.
We would like far more time to sit by you and talk, To bath you and feed you and help you to walk.
To hear of your life and the things you have done; Your childhood, your husband, your daughter, and your son.
But time is against us, there's too much to do - Patients too many, and nurses too few.
We grieve when we see you so sad and alone, With nobody near you, no friends of your own.
We feel all your pain, and know of your fear .That nobody cares now your end is so near.
But nurses are people with feelings as well, And when we're together you'll often hear tell
Of the dearest old Gran in the very end bed, And the lovely old Dad, and the things that he said, We speak with compassion and love, and feel sad When we think of your lives and the joy that you've had.
When the time has arrived for you to depart, You leave us behind with an ache in our heart. When you sleep the long sleep, no more worry or care, There are other old people, and we must be there.
So please understand if we hurry and fuss -
There are many of you, and too few of us.

10 THINGS ABOUT AUTISM

Here are 10 things every child with autism wishes you knew

1. I am a child with autism. I am not "autistic." My autism is one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)?

2. My sensory perceptions are disordered. This means the ordinary sights, sounds, smells, tastes and touches of everyday life that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you, but I am really just trying to defend myself. A "simple" trip to the grocery store may be hell for me. My hearing may be hyperacute. Dozens of people are talking at once. The loudspeaker booms today's special. Muzak whines from the sound system. Cash registers beep and cough. A coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can't filter all the input, and I'm in overload! My sense of smell may be highly sensitive. The fish at the meat counter isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles on Aisle 3 with ammonia. ... I can't sort it all out, I'm too nauseous.

Because I am visually oriented, this may be my first sense to become overstimulated. The fluorescent light is too bright. It makes the room pulsate and hurts my eyes. Sometimes the pulsating light bounces off everything and distorts what I am seeing. The space seems to be constantly changing. There's glare from windows, moving fans on the ceiling, so many bodies in constant motion, too many items for me to be able to focus - and I may compensate with tunnel vision. All this affects my vestibular sense, and now I can't even tell where my body is in space. I may stumble, bump into things, or simply lay down to try and regroup.

3. Please remember to distinguish between won't (I choose not to) and can't (I'm not able to). Receptive and expressive language are both difficult for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear: "*&^%$#@, Billy. #$%^*&^%$&*" Instead, come speak directly to me in plain words: "Please put your book in your desk, Billy. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it's much easier for me to comply.

4. I am a concrete thinker. I interpret language literally. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is, "This will be easy for you to do." When you say, "It's pouring cats and dogs," I see pets coming out of a pitcher. Please just tell me, "It's raining very hard." Idioms, puns, nuances, double entendres and sarcasm are lost on me.

5. Be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused, but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation, or other signs that something is wrong.

There's a flip side to this: I may sound like a little professor or a movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits, because I know I am expected to respond when spoken to. They may come from books, television or the speech of other people. It's called echolalia. I don't necessarily understand the context or the terminology I'm using, I just know it gets me off the hook for coming up with a reply.

6. Because language is so difficult for me, I am very visually oriented. Show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of patient repetition helps me learn.

A visual schedule is extremely helpful as I move through my day. Like your day planner, it relieves me of the stress of having to remember what comes next, makes for smooth transitions between activities, and helps me manage my time and meet your expectations.

7. Focus and build on what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough or that I need fixing. Trying anything new when I am almost sure to be met with criticism, however constructive, becomes something to be avoided. Look for my strengths and you'll find them. There's more than one right way to do most things.

8. Help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply don't know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, I may be delighted to be included.

9. Try to identify what triggers my meltdowns. This is termed "the antecedent." Meltdowns, blowups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented.

10. If you are a family member, please love me unconditionally. Banish thoughts such as, "If he would just ..." and "Why can't she ... ?" You didn't fulfill every last expectation your parents had for you, and you wouldn't like being constantly reminded of it. I didn't choose to have autism. Remember that it's happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you I'm worth it.

My 10 Things Autism all comes down to three words:

Patience. Patience. Patience.

Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. I may not be good at eye contact or conversation, but have you noticed I don't lie, cheat at games, tattle on my classmates, or pass judgment on other people?

You are my foundation. Think through some of those societal rules, and if they don't make sense for me, let them go. Be my advocate, be my friend, and we'll see just how far I can go.

I probably won't be the next Michael Jordan, but with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.

They had autism too.

THE LINK THE USA TRIED TO STOP ME POSTING

Thanks to USA the Big Brother and it's iron fist I will have to do it this way.......

....add the bits in blue to make a link.....then put it into your browser....

...and go there...but only do so if you believe that

the whole might of the United States of America

should be used to persecute a young man with asperger's syndrome

for wanting to find out about U.F.O's ! !


So.... freegary...that's the first bit.... .org ..... nearly there .uk


Hmmmmm, that seems to have done it. :-)

Do I get 60 years in an American jail too for standing up to Big Brother?

GARY McKINNON....given more time

Gary McKinnon given more time to challenge Alan Johnson's decision to extradite him

British computer programmer Gary McKinnon has been granted another seven days to challenge Alan Johnson's decision to extradite him to America to answer computer hacking charges.

Gary McKinnon with his mother Janis Sharp. Friend and family say he is 'suicidal'. Photo: Facundo Arrizabalaga

The news means that in theory that Mr McKinnon could be sent to America before the new year, if his application in the UK for judicial review is rejected, and he is refused leave to appeal to the European Court of Human Rights.

Mr McKinnon was this afternoon given until Thursday 10 December to challenge a decision in the High Court by the Home Secretary to ignore fresh medical evidence about Mr McKinnon's autism.

Mr McKinnon's solictor Karen Todner of KaimTodner had asked for a two week extension until 17 December, however this was denied in a letter from the Treasury solicitors, on behalf of Mr Johnson.

Speaking to The Daily Telegraph, Mr McKinnon's mother Janis Sharp questioned why the deadline was not extended further: "It is rididiculous. They could have easily extended it until after Christmas. It does not make sense."

If a high court judge refuses permission to challenge Mr Johnson's decision, Mr McKinnon's legal team have 14 days to hear whether the European Court of Human Rights in Strasbourg will take on the case.

If the Strasbourg court says no, then Mr McKinnon will be extradited, possibly before the new year.

Mr McKinnon, 43, who suffers from Asperger’s syndrome, a form of autism, is accused of hacking into networks at the Pentagon and Nasa. However, he insists he was searching for reports of UFO sightings.

A health report handed to Mr Johnson had warned the Asperger syndrome sufferer would be a suicide risk if he is sent to the US for trial on charges of hacking into top secret military computers.

It urged him to halt the extradition on the grounds that it would breach human rights laws.

A Home Office spokesman said: "At the request of Gary McKinnon's solicitors, the Home Secretary has granted an extension of seven days in which to apply for judicial review."

There were heated exchanges in the House of Commons yesterday when Mr Johnson was accused of being "spineless" over the extradition battle by David Burrowes, the Tory shadow justice minister and Mr McKinnon's MP.

Mr Burrowes said: "How ill and vulnerable does Gary McKinnon need to be, to not be extradited to the US? How can it be proportionate to allow extradition of a UK citizen who is suicidal and sectionable.

"Far from you saying you are powerless to stop Gary McKinnon's extradition, in the light of this medical evidence, you have shown yourself and your Government to be spineless."

Mr Johnson told MPs that Mr McKinnon, 43, had been accused of “serious offences” relating to hacking into US Government computer networks over 13 months and that he had no option but to agree to the extradition.

“There are very serious charges against Mr McKinnon. He has to answer for those charges,” he added.

GARY McKINNON denied appeal

Hacker denied extradition appeal

Computer hacker Gary McKinnon has been refused permission to appeal to the Supreme Court against extradition to the US on charges of breaking into the Pentagon's computer systems.

His mother last night accused the Government of "throwing their people to the dogs".

Janis Sharp said her son had been "suicidal" since learning he was to be extradited to America after hacking into military networks.

She said Mr McKinnon, who suffers from Asperger's Syndrome, had only been looking for UFOs.

At a fringe meeting of the Conservative party conference in Manchester, chaired by the National Autistic Society, Ms Sharp said: "When we vote someone in to protect our rights, we don't expect this to happen.

"We are the only country in the world that will extradite our own people with no evidence whatsoever," she told the meeting.

In July Mr McKinnon failed in his High Court bid to avoid extradition.

GARY McKINNON INTERVIEW

iDesktop.tv

PRIME MINISTER.....step in & help NOW ! !

iDesktop.tv

STEVEN WILTSHIRE 'the human camera'

iDesktop.tv

Professor Simon Baron-Cohen Director, Autism Research Centre (ARC) Professor of Developmental Psychopathology Fellow, Trinity College, Department of Experimental Psychology University of Cambridge Email: s.baron-cohen@psychol.cam.ac.uk Research interests: Autism, Asperger Syndrome, sex differences and empathy. I work at the ARC where we have 3 major programs: (1) cognitive neuroscience into the causes of autism spectrum conditions (ASCs); (2) diagnosis, screening and epidemiology of ASCs; and (3) clinical/intervention research into what helps individuals on the autistic spectrum. The first program includes genetic, endocrine, fMRI, cognitive (including perceptual) and behavioural studies. The second program includes the evaluation of screening checklists at different points across the lifespan, from toddler screens (the CHAT) to primary school screens (the CAST) and adult screens (the AQ). The third program includes treatment studies and special educational methods. For more details, see www.autismresearchcentre.com

iDesktop.tv

FAMOUS PEOPLE WITH AUTISM

Click on the link below:

http://www.youtube.com/watch?v=RTA5ov3YjbM

THE AUTISM BILL

By Cheryl Gillian MP for Chesham and Amersham
Published Monday, 26 January, 2009 - 22:17

---

As soon as I won the political lottery and was drawn first out of the private members’ ballot in December, I was inundated with numerous causes and issues, all worthy of support.

However, believing that a Private Members’ Bill should cover an area that could be overlooked by mainstream legislation, it was the Autism Bill that really captured my attention with devastating personal accounts such as this:

“She has quite calmly said that when we die, she plans to kill herself because she knows she will be completely alone and unable to care for herself. She weeps on a daily basis because she is so scared of the future. There is nobody to help her manage her daily life, and more importantly, who will love her when we're gone?” Parent of an adult with autism

The Autism Bill builds on the sterling work of my colleague Angela Browning and MPs across the House, such as Janet Dean and Liz Blackman. This is not a matter for party politics, but a critically important issue that is far too often overlooked and which affects people in every constituency. It is simply unacceptable how hard people affected by autism have to fight for the support that should be theirs by right. There are over 500,000 people with autism in the UK, yet despite the scale of the need, autism receives nowhere near the attention it deserves and there is a woeful lack of understanding, support and services for people affected by this serious, lifelong and disabling condition. The continuing postcode lottery of autism services across the UK is incredibly damaging. The National Autistic Society’s I Exist campaign revealed a stark daily reality for thousands of adults with autism who are isolated and ignored, unable to access support and often dependent on ageing families. Shockingly, it also revealed that at least 1 in 3 adults with the condition are experiencing serious mental health difficulties as a result.

It is the failure of the majority of local authorities to fulfil their responsibilities towards people with the condition, which has made the Autism Bill absolutely necessary. Very little current policy or guidance specifically applies to children or adults with autism and what is available isn’t being followed. One study found two thirds of local authorities have no idea how many children with autism there are in their area and, another, that just two are aware of the number of adults. Many local authorities are also failing to pass on vital information from child to adult services. Young people with the condition are thus being prevented from reaching their full potential, with the result that 40% of adults with autism live at home with their parents and over 60% are dependent on them for financial assistance. Many parents perform their role as carers without any assistance whatsoever, which can leave families isolated and often at breaking point.

Many professionals fail to understand the complexities of autism and there continues to be a widespread lack of training in the condition within local authorities - over three quarters do not have an autism training strategy - which often means that adults with the condition receive inadequate support or fail to qualify for any support at all. As support tends to be delivered locally either via a learning disability or mental health team, people with autism frequently fall between the two, demonstrated by the experiences of this adult with autism:

“Because of high IQ, I am not eligible and do not fit into any category for support. They do not recognize my disability and send me away. Even if I was eligible, there is no autism support here for people like me.”

In particular, there is a huge deficit in the kind of low level, cost-effective and relatively easily provided support, such as social groups and social skills training, that can help adults with the condition to be more independent.

Some of the simplest things, though, can make the biggest difference.

Local authorities need to know how many people with autism there are in their area and share information with relevant bodies; without this the needs of people with autism will continue to be excluded from the commissioning and planning of services. So the Autism Bill aims to: improve information on the number of children and adults with autism; ensure effective transition from child to adult services; and to ensure access to appropriate support and services for people with autism in adult life – all things that local authorities should already be doing.

With an estimated cost to the UK economy of around £28 billion, it is not just families who are bearing the social and financial cost of autism. When the right support is in place at the right time, however, it could prevent people’s needs from escalating, not only vastly improving their quality of life and that of their families, but also removing the need for more costly intervention – reducing the burden on the taxpayer.

The Autism Bill is backed by The National Autistic Society along with 13 other autism charities. Many MPs, cross-party, have already offered their support to help create the first ever autism law and I hope many more will back this important bill at its second reading on the 27th February – it has the potential to radically transform thousands of lives in every constituency and community.

I hope that together we can pass a measure that will make a real difference.

The public can ask their MP to back the Autism Bill at www.autism.org.uk/autismbill.

AUTISM BILL PASSED ! !

Campaigners from the NAS celebrate the passing of The Autism Bill The Autism Bill passed its final stage in the House of Lords on 22 October 2009 to become England’s first ever disability-specific law. Once it receives Royal Assent, the Bill will officially become the Autism Act, under which the Government’s forthcoming adult autism strategy will be legally enforceable and must be published within the next six months. Under the new law, the NHS and local authorities will have to provide diagnostic services for adults with autism and better training for health and social care staff, and they could face legal action if they fail to provide appropriate support for people with autism. The bill was drafted by the The National Autistic Society (NAS) and steered through Parliament, as a Private Members' Bill with cross party support, by Conservative MP Cheryl Gillan. NAS chief executive, Mark Lever, said; “Thousands of adults with autism told us they were experiencing serious mental health difficulties due to a lack of support. After a year of lobbying, this is the watershed moment they have been waiting for - this law could literally transform lives”. .

MY BOOK IS NEARLY READY ! !

Over 500,000 people of all ages in the UK have disorders in the autistic spectrum. About one-third also have varying degrees of learning difficulty. All have impairment of social interaction, communication and imagination - the world appears a bewildering, confusing and often frightening place. I am hoping that my book will explain how people with autism experience the world and why they need an organised, structured environment. I will be looking at ways of improving communication, developing abilities and widening social interaction, and how to cope with stresses within the family.

This book is a basic introduction to the field of autistic spectrum disorders. It is primarily aimed at parents who have learned that their son or daughter has an autistic condition but it may also prove useful for health care professionals/ social care workers who are beginning to work in this area.
I hope that some people who know, or suspect, that they may have an autistic spectrum disorder would find also it helpful.

Although there are many variations, autistic spectrum disorders have in common problems affecting social interaction, communication and the development of imagination, associated with a narrow and repetitive pattern of interests and activities.

I have highlighted 'The Triad of Impairments' and described in some detail the many different forms that these problems can take. I have suggested ways of helping children and adults with autistic spectrum disorders cope with everyday life.

Let's hope that the publishers like it......there's a little way to go yet as my friend, ex-colleague from the 'front line' and undoubted secretarial genius, Kate Denkinson, and I now set out to produce the first draft.

WELCOME TO MY WEBSITE.

I entered the field of autism in 2001 knowing absolutely nothing. In retrospect it was a good place to start. No preconceptions or opinions at all. I didn't even know what the word 'autism' meant.

My first care manager sat in the chair opposite and smiled. He paused for a moment. " Imagine suddenly being put in the middle of a street somewhere. You don't know where this place is. You cannot make sense of the road signs. The boards over the shops don't tell you anything. You cannot interpret the language or facial expressions of the passers by. The lights from the cars are dazzling. The surrounding sounds are all deafening. You are completely alone. How would you feel?" he asked.


"Scared, disorientated, not a part of things, paranoid", I answered.

8 YEARS LATER.

Eight years later and in some ways I know so much more. Over 40 workshops and courses. NVQ3 and NVQ 4 in Health & Social Care. NVQ Assessors Award Level 4 Award in Health & Social Care. The Registered Manager's Award in Health & Social Care. And in other ways.....I know absolutely nothing. I have listened. Talked. Laughed. Cried. Been punched and kicked senseless, (though no more so than any of my colleagues), eg. broken nose, dislocated elbow, internal bleeding....frequently covered in faeces, urine, vomit, blood, saliva and most meals that ever appeared on a menu. I have attended countless seminars, read thesis after thesis, trawled through every paper, website, documentary, newspaper.....video clips, dvds, . . . . . . . . . .just hoping to find some kind of answer. All I, (think I), know is that every person with autism is different. Every 'autism' itself...is different.
That first manager taught me a valuable lesson. Well, he taught me more than one.....but this was perhaps the most valuable...."learn the person....not the autism." "If you learn the person you'll learn his autism at the same time." Thank you Nick Stone.
And, while I'm in 'thank you' mode......John Mortlock. He lectured on my very first course. Two days passed like 2 minutes. Utterly captivating.
We sat in that Exeter hotel conference room. He surveyed us all. I was the newest recruit. He asked, "do you realise how lucky you are?"
"In 1943 the Austrian psychiatrist Dr. Leo Kanner was the first physician in the world to be identified as a child psychiatrist, founder of the first academical child psychiatry department at John Hopkins University Hospital and his first textbook, Child Psychiatry in 1935, was the first English language textbook to focus on the psychiatric problems of children. His seminal 1943 paper, "Autistic Disturbances of Affective Contact", together with the work of Hans Asperger, forms the basis of the modern study of autism". "That was just 58 years ago. In the history of time...and in the history of medicine...that is like yesterday. It is like minutes ago! You, my friends, are in at the very BEGINNING of the story of autism! It is perfectly feasible.....in fact, it is very likely...that...you may see something...hear something...or recognise something...on your very first day...about autism...that no-one else has noted yet!!" "How amazing is THAT??"
At that moment I realised that turning down that other prestigious job for one that paid only a third as much had been the best decision of my life. I have never regretted it for one second. Thank you John Mortlock. I have passed your passionate words on to countless new recruits and will continue to do so.

A IS FOR AUTISM.

This excellent 11 minute film about autism is now a 'classic.'

Just click on the link below:

http://uk.video.yahoo.com/watch/2190791?fr=yvmtf

I THINK MY CHILD HAS AUTISM.

If your child seems to be developing differently from other children you may suspect that they have a disability. If this is your first child, you may feel unsure how to tell whether your child is developing normally.

Neuro-typical, (ie. normal), child development in the early years:

Six weeks – neck muscles develop so that most babies can balance their heads a short time if they are kept still. They start smiling when they hear familiar voices and see familiar faces.

Eight to ten weeks – babies can focus better and follow moving objects with their eyes. This is the beginning of hand eye co-ordination. They start to make sounds of pleasure usually when you are playing or holding them. By ten weeks they respond to your talk with their own sounds and start practicing sounds when on their own.

Three months – neck and shoulder muscles get stronger so that most babies can control their heads completely and will be able to roll from their backs onto their sides.
Babies begin to know one face from another and will soon prefer familiar faces to strangers’.
They will swipe at an object but will not be able to hold it yet.
From three months the language learning process becomes very clear. Babies will make a lot of babbling noises, beginning with cooing noises and then adding harder sounds.

Four to six months – babies can work out how far away an object is and are beginning to grasp objects. At six months they grasp objects with their whole hand and use their cupped hands to scoop things up. New sounds will be added to the babbling noises.

Six - eight months – babies are beginning to be strong enough to sit up unaided but balance will still be a problem. Some will be trying to crawl. They recognise familiar voices and by the eighth month will take an interest in adult conversation. They will have a strong bond with their main carers and get upset when you are out of sight. They can manage finger food by themselves because between seven and eight months they are making use of their fingers and thumbs for grasping and holding onto things.

Nine months to one year – by nine months most babies will be able to sit up without difficulty, and by ten months they may stand. They will be using their hands to point and poke and make gestures such as waving. They will be able to pick up the tiniest object and eventually they will learn how to let go of objects too.
Babies understand a lot more words than they use at first. They use their first real spoken words in their tenth or eleventh month but it might be hard to spot them amongst their ‘chatting’ sounds. Babies may be more worried by strangers as they reach their first year and can become clingy with you.

One to two years – sometime during the first year babies become toddlers and will be walking independently on average between 14 and 16 months. They generally need less sleep and are very active, exploring their surroundings and learning about the different weights and textures of things. By two toddlers make great strides in understanding whether objects are the same or different from each other and will be beginning to group them in their minds.
Some children will gain enough control to come out of nappies but many children will take another year or two. Toddlers are not ready to play with other toddlers but enjoy playing alongside them. Language takes off generally at around twenty months and by two the toddler is likely to be adding second words and soon after short sentences. If your child is not talking at all by the time they are two and a half, then ask your doctor or clinic for a developmental check-up.

Three to four years - by the third year the young child will be beginning to understand abstract ideas like “soon” or “more”. Their language will expand to take in new concepts such as “heavy’ and “light”, to describe things that are not in the same room, and to explain feelings and ideas. “Why” and “what’s that?” will be their favourite phrases as they expand their vocabulary and understanding. Most children of this age talk all the time. Imaginative or ‘pretend’ play will make use of all this language. By four they will enjoy playing with other children, learning to share and take turns.

If your child has autism, finding out as quickly as possible will make it easier to get the right help for them.

Children with autism cross the ability range. Some can be gifted in different subject areas but the majority have difficulties relating to other people, many may never learn to speak and may never be independent. This wide range is called the autistic spectrum. At its most profound, people with autism may be disruptive and unpredictable and may be aggressive to others and/or themselves and their environment. They may seem to be living in a world of their own. Their lives, and those of others who care for them, particularly families, can be extremely stressful.

Children with autism have difficulties in three main areas:

• social skills such as making friends and interacting with other people
• communication – explaining how they feel and think including problems with speech and other ways of communicating, such as facial expressions and gestures. Some children simply do not learn to talk
• imagination – understanding that other people have thoughts and feelings. Children with autism can be very rigid and may have fixations on different objects or topics

Children with autism always have difficulties in these three areas but they show up very differently from child to child.

Children with autism have an individual way of looking at the world. Some have particular strengths such as an ability to focus on detail and concentrate for a long while on one thing; some have a talent for learning facts and particular skills. Many have quite severe deficits in all three main areas.

Children with autism may react differently to sounds, sights, smell, touch and taste, which affects their response to these sensations. They may also have unusual sleep patterns and behaviour.

It can be hard to diagnose autism in very young children because the age at which children typically learn to walk, talk and play can vary. One child may say little until they are two and then start to speak in sentences; some children may be walking before their first birthday and others may be 18 months before they start. Children may speak late for all sorts of reasons: they may be busy learning other things such as walking; they may be twins who often develop language later; if your family is bilingual, they may be learning two languages at once. Some children may have less experience of face-to-face talk with those in immediate contact with them. Boys often learn language later than girls so remember, the stages below are just averages; most children will be quicker or slower at reaching them. If you are worried that your child is not developing in the same way as other children, ask for a check up from your doctor or clinic.

An assessment is the first step to finding out. This is a check on how your child is developing in different areas such as their social, physical and learning skills.

MY CHILD HAS BEEN DIAGNOSED WITH AUTISM.

Before and after your child has been diagnosed with autism, there will be all sorts of things that you will want to find out about and get information on. The right provision, support and education will be essential as well as involving the family. See what your nexts steps might be here.

Involving the family

Explaining the diagnosis to your family may not be easy, especially if you feel they have been critical of you as a parent.
Your child’s difficulties may already have been noticed by other members of your family. They may feel relief that you can give the difficulties a name or they may be upset and find it hard to take in. The label of autism may puzzle or upset them so try to explain it in terms of what your child can and cannot do and how you may need their help.
If you have been given leaflets or other information, show these to your family too. If you have found any websites useful, print out the information for them or suggest they look for themselves.

Grandparents, aunts and uncles can make all the difference when you are trying to cope with the different needs of brothers and sisters, especially where one or more child has a disability. They may be able to give you a break from caring so you can spend time with your partner, friends or on your own and they may be able to help with brothers and sisters who may feel pushed out because of the time you need for your child wit autism.

Whether or not you have close relatives or friends nearby, try to find a parents’ support group. Parents often say how helpful it is to talk to other parents in the same situation. Your health visitor, social worker or parent partnership service will know what is available.

NEXT STEPS.

When you first get a diagnosis for your child, it may be a shock. Sometimes it can be a relief to know but you may also feel upset, angry or confused. You may not be able to take in much at first about what this means for your child and family but later you will want to find out more to make sure you get all the help your child needs.

Get the professionals you are talking with to write down information about your child’s diagnosis for you so that you have a written record of your child’s difficulties that you can follow up later if necessary.

It will help to know:
• a clear diagnosis of your child’s difficulties
• how your child will be affected
• what you can do to help their development
• what support they will need from other services
• who to contact if you have questions in the next few weeks and months.

It may take time to get full answers to all the questions you will have but assessment of your child’s difficulties will be the first step in getting a fuller picture of their needs.

You will probably want to talk about how your child is affected now and in the future and find out more about autism and the help available.

AUTISM IN THE UK.

• Autism now affects about one in 100 children. There are around 100,000 children with autism in the UK, with around half a million family members directly affected by the condition. 1
• Four times as many boys as girls have autism 2

Autism and education

• In schools with pupils with autism, only 22% of teachers have been trained specifically in autism – the majority of training given is typically one to four hours.3
• The most recent survey found only 7,500 specialist places for over 90,000 children with autism in the UK. 4
• One in five children with autism have been excluded from school, the majority of those on more than one occasion. 5
• The number of autistic pupils with a statement in England has increased greatly from 23,960 in 2004 to 34,550 in 2008. Figures for the numbers of pupils on the autism spectrum on School Action Plus show a greater increase, from 7,300 in 2004 to 12,750 in 2008. 6

What this means for parents, carers and children

• Many families with autism live in poverty as it costs on average three times more to raise a child with a severe impairment than a non-disabled child. 7
• Parents of children with autism are more likely to split up – perhaps as many as 80%.
• Only 11% of carers who have children with autism work full time, and 70% say the lack of appropriate care facilities stops them working. 8
• Over 40% of children with autism have been bullied at school. 9
• Parents of children with autism are more likely to go to Tribunal about their child’s education. 10

Costs

A cautious estimate is that autism currently costs the UK economy at least £1billion each year, the vast majority spent on lifetime care. According to a 2000 study, the average lifetime cost of autism was estimated as £2.94m. The research team stated that ‘Evidence suggests that even moderate increases in educational provision could potentially result in major savings in later living costs’. 11

Footnotes

1. The Office of National Statistics recently reported a rate of autism of 1% in the population of school-age children. Office of National Statistics (2005), Mental health of children and young people in Great Britain, London: Palgrave Macmillan. The Medical Research Council suggested a prevalence rate of 1 in 166 children under 8, while teachers have reported numbers as high as 1 in 80. Medical Research Council (2002) Review of Autism Research: Causes and Epidemiology, MRC: London; Barnard, J. et. al. (2003), Autism in Schools: Crisis or Challenge?, NAS: London.
2. In the ONS survey cited above, 82% of children with autism in the sample were boys.
3. Barnard, J et. al. (2003), Autism in Schools: Crisis or Challenge?, NAS: London.
4. Jones, G (2002), Educational Provision for Children with Autism and Asperger Syndrome: Meeting Their Needs, David Fulton Publishers: London.
5. Batten, A et. al. (2006), Autism and Education: The Reality for Families Today, NAS: London.
6. Autism Education Trust (2008), Education Provision for Children and Young People on the autism spectrum living in England: a review of current practice, issues and challenges, NAS: London.)
7. Sharma, N (2003), Still Missing Out? Ending poverty and social exclusion: messages to government from families with disabled children, Barnardos: London.
8. Broach, S et. al. (2003), Autism: Rights in Reality, NAS: London.
9. Batten, A et. al. (2006), Autism and Education: The Reality for Families Today, NAS: London.
10. SENDIST annual report (2007)
11. Knapp, M. & Jarbrink, K. (2000), The Cost of Autistic Spectrum Disorder, Foundation for People with Learning Disabilities Update, 1, 7, April 2000.

SERVICES THAT CAN HELP WITH A DIAGNOSIS.

Schools

All teachers in local authority schools and government funded nurseries are expected to meet the needs of children with special educational needs often with support from a teaching assistant. The special educational needs co-ordinator (SENCO) is the teacher in a school or nursery who has responsibility for organising the support for children with special educational needs. They may not always work directly with your child, but will support other staff and link up with the local authority and parents to make sure children get the help they need. Schools may request a statutory assessment of a child’s educational needs or help you with a formal request. Reviews of individual education plans and statements of SEN will generally be organised by the SENCO who will invite parents to discuss their child’s progress with the school.

Local authority services

Local authority services for children, including education, are now combined into Children’s Services Authorities or Children’s Trusts. While professionals will be working more closely than before, they operate under different legislation and often the funding is still separate.

Early years key worker

Under the Early Support scheme, young children with complex needs and their families may be allocated a key worker or lead professional who could come from health, education or social care services. The key worker’s main roles are to provide information to you and pass it on to other professionals as necessary and to co-ordinate the help that comes from a range of services. They should act as a contact point helping you understand the system and helping you find their way through all the services including benefits, transport and education.

The key worker will take responsibility for ensuring a Family Service Plan is agreed with you and reviewed regularly. The plan is included in the Early Support Family Pack, an information pack, which is given to families of newly diagnosed disabled babies and young children. The Plan may list the services which will be provided and give details of who will do what.

Education services

Education services for children with special educational needs are provided under the Education Act 1996, (as amended). This details when your local authority should offer extra support for your child. Professionals working within education services include:

The educational psychologist (EP) generally a qualified teacher who has additional training as a psychologist. EPs assess children for learning difficulties and can suggest ways teachers can help a child with special educational needs. All local authorities have an educational psychology service but some EPs work privately.

The special educational needs officer (or Named Officer) – your contact with the local authority if your child is having a statutory assessment or already has a statement of SEN.

Parent partnership service (PPS) – every local authority has a parent partnership service which helps parents of children with special educational needs (SEN) in their dealings with schools and local authorities. Parent partnership officers will support parents whose children are having a statutory assessment leading to a statement of SEN. They may also offer parents help via an independent parental supporter, a volunteer who is trained by the PPS.

Social Services

Social services for children with disabilities and other needs are provided under theChildren Acts 1989 and 2004.
You can write to your local Social Services department to ask for an assessment of your child’s needs. Social workers can offer support and advice on services such as play schemes, parents’ groups and short breaks.
Social workers and care managers are involved in the assessment of care needs of people with disabilities and their family. They are also involved in arranging help to meet needs. If you do not have a named social worker or care manager and need urgent assistance from social services you should ask to speak to the duty social worker at your local department.

Health services

If there are concerns about a child’s mental health, it is likely that the local Child and Adolescent Mental Health Services, (CAMHS), will be involved. These services are based at the local primary care trust (the local part of the NHS, including doctors’ surgeries), and will be able to recommend counselling or other mental health services if they are needed.
Health service professionals can diagnose your child’s difficulties and/or offer help. They include:

Paediatricians who specialise in children’s health and development. They may diagnose your child with ASD and may offer support.

Psychiatrists who are often involved where there are mental health difficulties. They may diagnose your child with ASD and may offer support. They are able to prescribe medication.

Clinical psychologists help children with specific problems such as overcoming behaviour difficulties. The clinical psychologist may diagnose your child with autism and may offer support.

Health visitors are qualified nurses or midwifes with additional training in child health. They visit families at home when they have children aged between 0–5. They give advice on the care of young children, normal child development, feeding and behaviour etc. Health visitors can help you contact other health services. Some areas have specialist health visitors who have experience of children with disabilities.

Occupational therapists (OT) help children carry out everyday activities such as using a spoon and fork. They can give particular help to children with autism, for example by using methods which calm their sensory systems.

Physiotherapists focus on physical and motor development. They can assess your child for physiotherapy treatment, give advice on equipment and teach parents how to handle their child when bathing, dressing etc.

Speech and language therapists can assess speech, language and communication difficulties and carry out therapy. They often work closely with other professionals such a teachers. They can give particular help to children with autism for example, using different communication systems. Speech and language therapists are often involved in the diagnosis of ASD as part of a muti-disciplinary team, ( ie. professionals from different backgrounds – health, education or care etc – working together to support families and children). Help from a speech and language therapist on the NHS can be accessed through a referral by your GP or through the local authority when it includes it in your child's statement, (ie. a document which sets out a child’s needs, extra help and school place. The educational help on a statement must be provided by law).

TRICIA REGAN.

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