Disabled man, 40, with the mental age of seven is barred from his regular visits to Legoland over child protection fears

  • Disabled Simon Thomason barred from regular visits to Legoland
  • 40-year-old has cerebral palsy, autism and a metal age of seven
  • Attraction also barred Anthony Lewis, 20, who has Williams Syndrome  
  • Legoland Discovery Centre refuses entry to adults without children
  • Policy branded ‘unfair’ and ‘ridiculous’ by families of disabled men
  • Say the policy at the centre in Manchester is ‘reasonable and appropriate’
  • Offer evenings for adults but say if it is difficult could arrange for manager to take men round  

A disabled man with the mental age of seven has been barred from his regular visits to Legoland with his carer because of ‘child protection’ fears.

Simon Thomason, 40, who has cerebral palsy, autism and a mental age of seven, has been told his annual pass to the Manchester-based attraction will not be renewed.

Legoland Discovery Centre say they have a policy of refusing entry to adults without children and have defended their decision to turn away Mr Thomason, who was accompanied by an adult carer.

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Simon Thomason, 40, who has the mental age of seven, has been barred from Legoland Discovery Centre, Manchester

Simon Thomason, 40, who has the mental age of seven, has been barred from Legoland Discovery Centre, Manchester

But families and disability campaigners have slammed the policy as ‘discrimination’ and say it effectively bans their childless relatives from the attraction.

Mr Thomason’s sister, Paula, 41, from Irlam, in Greater Manchester, bought the £60 annual pass for her brother last year after explaining his condition to staff.

But after seven months of weekly visits to the attraction in the Trafford Centre Mr Thomason was told he was no longer welcome due to ‘child protection’.

He was instead offered a pass for alternative venues run by parent group Merlin Attractions elsewhere in the UK.

When Miss Thomason argued this was unfair, management said they would honour the last five months on the pass but it would not be renewed.

The family also now have to email in advance before he can visit.

And in another case, a 20-year-old man with learning disabilities and his carer were also refused entry.

The Legoland Discovery Centre, pictured, has a policy of not allowing adults to visit if not accompanied by a child

Elaine Lewis’s son Anthony, 20, who has Williams Syndrome and the mental age of six, was also turned away when he tried to visit this week.

Mr Lewis’s carer was also told adults without children were not allowed entry.

The mother, from Gatley, Stockport, said: ‘The ridiculous thing is Simon would be allowed in if he went with a child – but neither would be able to look after each other.

‘He just wants to go and play with the Lego and look at the models.’

Clare Lucas, activism lead at charity Mencap, also slammed the decision.

She said: ‘It is unfortunate Legoland Discovery’s policy has had a negative effect on someone with a learning disability who wanted to go out and access leisure activities many people take for granted.

Simon Thomas, pictured with his sister Paula, 41,  had been visiting the attraction on a weekly basis for seven monthswhen he was told he was no longer welcome

Simon Thomas, pictured with his sister Paula, 41,  had been visiting the attraction on a weekly basis for seven monthswhen he was told he was no longer welcome

Anthony’s mother Elaine calls Legoland rules ‘a little crazy’

The attraction, aimed at three to 10 year olds, features 4D cinema, laser ride, driving school, and offers workshops with master builders.

It states on the Discovery Centre website that adults must be accompanied by children to visit.

But a spokesman for Legoland Discovery Centre said: ‘Our policy not to permit entry to groups of adults, adult couples, or lone adults, regardless of circumstances, who are not accompanied by a child or children under the age of 16 is we believe therefore appropriate and the best way to constantly maintain a welcoming environment for our young visitors.

Anthony Lewis, 20, who has Williams Syndrome and the mental age of six, was also refused entry to the attraction

Anthony Lewis, 20, who has Williams Syndrome and the mental age of six, was also refused entry to the attraction

‘We make no apologies for this policy and believe it to be reasonable and appropriate, and one on which we make no exceptions.

‘That said, we also very much appreciate the continuing appeal that LEGO has for all ages, and it has never been our intention to deny access to our adult fans, or cause distress to anyone.

‘That is why we regularly host evening events specifically for adults in order to showcase specific attractions within the centre and these are very well attended.

Anothony's mother Elaine Lewis said her son,  'just wants to go and play with the Lego and look at the models'

Anothony’s mother Elaine Lewis said her son,  ‘just wants to go and play with the Lego and look at the models’

‘We hope very much that all adult guests will join us at one of these sessions and we are sure that he would very much enjoy it.

‘However if an evening event is difficult for him to attend then if his family make contact we would be happy to agree a time when one of our managers is available to show him around.’

Read more: http://www.dailymail.co.uk/news/article-2924553/Disabled-man-40-mental-age-seven-barred-regular-visits-Legoland-child-protection-fears.html#ixzz3PmDn5raR

Autistic children being ‘robbed of an education because schools don’t know how to support them’

Thousands of children on the autistic spectrum are being temporarily excluded from the classroom illegally because schools don’t know how to support them

Fight: Clare says her only option is to educate Josh at home

While most children went back to school this week after the half-term holiday, Josh Moore wasn’t among them.

Four years ago, he was a happy ­nine-year-old thriving in a mainstream primary school.

As with most boisterous young boys, his behaviour occasionally gave teachers cause for concern, but Josh was settled and doing well in lessons.

But then he was diagnosed with ­Asperger syndrome – a form of autism – and his happy schooldays were suddenly over.

He was sent home from class nearly every day with little or no warning and mum Clare was constantly being phoned by the school and asked to fetch her son.

Now, aged 13, he has dropped out of the school system altogether.

Clare has since learnt that these ­‘temporary exclusions’ are actually illegal, but the catastrophic effect on Josh’s schooling will never be undone.

She is just one of tens of thousands of parents in the UK struggling to educate a child who is on the autistic spectrum of behavioural problems.

Four in 10 parents surveyed by the charity Ambitious about Autism for its ‘Ruled Out’ campaign reported that their autistic child had been illegally barred from attending school during the previous year.

One in 10 of them said it happened every day.

And many had been barred from going on school trips or taking part in social activities.

With more than 70,000 ­school-age children with autism in England, that means 28,000 children are potentially being robbed of the ­education they are entitled to.

Gavin FoggJosh Moore age 5 (left) with his older brother Jordan age 7
School: Josh Moore age 5 (left) with his older brother Jordan

One in five families surveyed by the charity said their autistic child had been formally excluded in the last year.

And that’s just autism.

In general, children with special ­educational needs are up to 11 times more likely to be permanently excluded, despite schools having a legal obligation to do all they can to meet their needs.

While schools have the right to formally exclude a child, it should only be treated as a last resort, in consultation with parents and the local authority.

Instead, Ambitious about Autism’s research suggests many schools are barring children simply as a way of managing their behaviour.

Clare, 34, from Birmingham, feels the system has failed Josh completely.

The impromptu exclusions hit after his Asperger’s diagnosis.

Within a few months, Clare was called in to take Josh home on an almost daily basis.

“I tried to negotiate a part-time timetable to help the school, but in reality they’d just phone me the day before and tell me if Josh was ‘allowed’ to go to school,” she says.

“Sometimes they would say things like, ‘We have a special assembly tomorrow and don’t think Josh will cope, so don’t bring him in’.”

Clare, a former midwife who is also mum to Jordan, 15, and Oscar, five, said: “He wasn’t hurting anyone.

“I’d typically get a phone call to collect him because he wouldn’t come out of the classroom at playtime or because he was tapping with his ruler in class.

“After his diagnosis, we thought the school would look after him and help us find our way with autism, but it was the o­pposite.

“He was in his last year of primary school and the staff just washed their hands of him.

“Within a year, his schooling had totally fallen apart.”

Clare and her husband Richard pinned their hopes on a new start at secondary school.

But after a promising first term, Josh experienced 13 fixed-term exclusions – documented, legal suspensions – and Clare pulled him out of school in June last year before he was expelled.

“My only option was to home educate,” she says.

“The education system failed him. As a mum you just want your child to enjoy childhood, but Josh became so unhappy.

“In my view, that was because he was not supported at school.

“What makes it even sadder is that we are far from alone.

“Autism is so well ­recognised nowadays, it is hard to believe there is such ignorance among those who should be helping the most.”

Jolanta Lasota, chief executive of ­Ambitious about Autism, said tackling the problem should be a national priority.

“The education system is failing a very large number of children on the autism spectrum,’’ she says.

Gavin FoggJosh Moore age 5
Josh: ‘Staff just washed their hands of him’

“For the last 70 years it has been the right of every child to attend school, and that right is no different for children with autism.

“There are over 70,000 children in England of school age with autism and 70% of them are attending mainstream schools.

“Some schools are doing a brilliant job and, with the right support, children do very well.

“Yet four in 10 have been subjected to illegal exclusion in the last 12 months and 20% have been formally excluded.

“The long-term implications are huge because we know that most of those children will end up unemployed and dependent on others for the rest of their lives.”

Her charity is demanding action to ensure every school has access to a specialist autism teacher – 60% of teachers in England have reported not having adequate training to teach children with autism – and every parent to know their rights.

For Helen Leask, 37, from Farnborough, Hampshire, the actions by her son Daniel’s infant school came close to having ­catastrophic consequences.

“From the start I told them that ­something wasn’t right with Daniel, but they said ‘no, there’s nothing wrong’.

“They wouldn’t acknowledge that there was a real issue, when I knew as a mother that there was.”

Even in his last year of infant school, when Helen and her husband were called to collect Daniel on at least four occasions because of his ­behaviour, the school would not admit there was a problem.

The unofficial exclusions were not ­documented, which meant there was no record of his problematic behaviour.

Moving to junior school proved a crunch point for Daniel.

“Within two weeks, I was having to collect him from school early, coaxing him out from under tables or trying to get him to climb down from a tree,” Helen says.

“They tried their hardest, but because of the lack of information from the infant school, help could not be put in place in time to keep Daniel in school and he was permanently excluded.”

For Helen, who also has a daughter, Ella, 12, the temporary exclusions proved not only frustrating, but also a huge practical obstacle to getting help.

Gavin FoggJosh Moore age 5 from Birmingham with his mum Clare
Battle: Josh is now home educated by his mum

Having not been officially excluded, Daniel wasn’t on the local education authority’s radar.

“The school was begging for help but because the LEA had not heard of him, we had to wait for it to catch up.

“We were on our knees, begging for them to give him a statement of special needs.

“I was in the horrible position of wanting someone to tell me there was ­something wrong with my child.”

Eventually, when he was seven, it was confirmed that Daniel was on the autism spectrum.

“The experience set Daniel’s ­education back by at least two years and it ruined his self-esteem,” says Helen.

“It was heartbreaking to see him regress, knowing in his own way he was crying out for help.”

Helen says that parents need to know that these exclusions are wrong and illegal, and schools need to be more aware of the implications of their actions.

Eventually, the LEA agreed that Daniel, who is now 10, needed to be in a special needs school, where he is thriving.

“They’ve given me back my child,” says Helen.

Another mother, Kasthuri, who does not wish to give her surname or son’s name, was called by his primary school to collect him 18 days in a row.

“They treated him like a piece of fu­rniture, not a human,” she says.

Her son’s first 18 months of schooling, after he was diagnosed with autism aged three, was in India, where Kasthuri says he received care tailored to his needs, so much so that he was exceeding expectations.

His teaching assistant from India then spent six months in the UK settling him into Year One at primary school.

Roger Allen North Downs PictureHelen Leask with her son Daniel
Struggle: Helen Leask with her son Daniel

But just three days after she left, in October last year, Kasthuri was called for the first time to collect her son – the first illegal exclusion of many. Kasthuri is angry that the LEA did not step in and tell the school they were acting illegally .

Her son was eventually issued with a fixed-term exclusion from school.

He has now been given a place at a school for children with severe needs, despite Kasthuri’s ongoing belief that a setting for children with mild learning ­disabilities would be better for him.

“The LEA won’t listen,” she says.

“Instead of looking at the individual child, their attitude is ‘You should be happy with what you’ve got’.”

In the proper environment there would be no limits for her son, she says. “Instead, he has been written off at the age of seven.”

The Department for Education said: “All councils must ensure children are educated in a setting which meets their needs, and schools must follow strict rules when excluding pupils.

“‘Informal’ or ‘unofficial’ exclusions, such as sending pupils home ‘to cool off’ are unlawful, regardless of whether they occur with the agreement of parents or carers.

“Any exclusion of a pupil, even for short periods of time, must be formally recorded.

“If parents of children with ­disabilities believe their school has unlawfully excluded their child, they should first make a complaint to the school.

“If they are not satisfied with the response, they can make a disability discrimination claim to the First-tier Tribunal (Special ­Educational Needs and Disability).”

It added that the Government is tackling the causes of exclusion by funding training on autism and with its ­Children and Families Bill which will give parents a greater role in decisions.

The children of two on drugs for hyperactivity: Psychologists warn health workers are going ‘straight to medication’ instead of offering therapy or support for parents

  • More than one in five psychologists aware of children under five on drugs
  • These include Ritalin to treat attention deficit hyperactivity disorder
  • National Institute for Clinical Excellence states ‘drug treatment is not recommended for pre-school children with ADHD’

Children as young as two are being prescribed ‘chemical cosh’ drugs to curb hyperactivity – in defiance of official guidance.

More than one in five psychologists are aware of children under five on drugs such as Ritalin to treat attention deficit hyperactivity disorder and other behavioural conditions, according to a survey of health professionals.

Psychologists warned that overstretched health workers were increasingly going ‘straight to medication’ instead of offering behaviour therapy and parenting support.

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More than one in five psychologists are aware of children under five on drugs such as Ritalin to treat attention deficit hyperactivity disorder and other behavioural conditions

More than one in five psychologists are aware of children under five on drugs such as Ritalin to treat attention deficit hyperactivity disorder and other behavioural conditions

And they highlighted a growing ‘intolerance of difference’ which meant that children who struggled to fit in to certain environments were perceived to have ‘something wrong with them’.

The National Institute for Clinical Excellence, which sets national standards for healthcare, states that ‘drug treatment is not recommended for pre-school children with ADHD’.

Ritalin – a brand name for methylphenidate – is also not licensed in the UK for use in children under six, since ‘safety and efficacy in this age group has not been established’.

Doctors are warned they must take full clinical responsibility if they choose to prescribe it.

The survey by the British Psychological Society’s Division of Educational and Child Psychologists covered 136 educational psychologists in 70 local authorities across the UK.

Some 22 per cent of respondents reported being aware of pre-school children taking stimulant drugs contrary to NICE guidelines.

It also emerged that among school-age children ‘medication was felt to be the predominant form of treatment’ despite further NICE advice that psychological therapies should be tried before drugs.

The National Institute for Clinical Excellence, which sets national standards for healthcare, says ‘drug treatment is not recommended for pre-school children with ADHD’. File photo

The National Institute for Clinical Excellence, which sets national standards for healthcare, says ‘drug treatment is not recommended for pre-school children with ADHD’. File photo

NHS advice on how to deal with an active child

Vivian Hill, one of the study’s authors, said: ‘It is almost certainly to do with the fact that the whole of children’s mental health services is incredibly underfunded.’

Miss Hill, director of professional educational psychology training at the University College London Institute of Education, added: ‘I have certainly seen reference to children of two and three who have been prescribed medication.’ These were likely to be ‘severe’ cases, she added.

But she warned of potential risks to children’s health. ‘We have no idea about the long-term consequences of exposure to this medication,’ she said.

The Department of Health said: ‘Children’s mental health is a key priority, which is why we’ve formed a taskforce to look at how we can provide the best possible care, and have invested £54million in improving access to psychological treatments.’

Read more: http://www.dailymail.co.uk/health/article-2884297/The-children-two-drugs-hyperactivity.html#ixzz3N7A4ZCFB

I hope new special needs money makes councils listen to children like mine

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Until everyone understands the invisible impairments children have, I will fight on for them to be heard
A class for children with special needs.
A class for children with special needs. Photograph: Andrew Fox

Like every parent of children with special educational needs, today’s announcement by the government of £31m extra special needs (SEN) funding for local authorities gives me hope that things will improve. But, as yet, it’s unclear what the government’s reforms will mean for our family. We have four children with additional needs: our eldest, Olivia, 20, has attention deficit hyperactivity disorder (ADHD) and dyspraxia and is studying drama at university; Talia, 13, has Asperger’s and dyscalculia; Imogen, 8, has autism including Tourette’s; while our adopted son, who is five years old, has attachment difficulties.

We didn’t realise they had issues until they went to nursery. Imogen loved to crawl into small spaces and squeeze faces, Talia wouldn’t eat foods if they had touched each other, Olivia walked and wrote backwards and my son would break things and not join in sitting down.

At home, getting ready for school is the loudest and most stressful two hours of the day. The children are sometimes depressed, often troubled, melting down or needing to talk things through and always highly anxious about the day ahead. Both my husband and I have to be hypervigilant. Gone are our old parenting techniques of strong discipline and a one size fits all approach. Each child is treated according to their needs to bring about the best outcomes for them and for those around them. Most of the time it works, but not always and often it is a wrung-out wreck of a mum who turns up at the school gate to meet the SEN coordinator.

Even with a great SEN coordinator, I have had to learn to fight, trying to explain invisible disability to every member of staff who comes into contact with my children. All our girls have sensory challenges, so brightly lit, noisy, cluttered classrooms are a real challenge for them. Olivia’s attention will often drift, she fidgets constantly and also struggles with co-ordination. Talia is very compliant but won’t say if she doesn’t understand something. She is very anxious and needs someone in school to help her make sense of what may be going on around her. Imogen needs help and encouragement to focus and can have challenging behaviour. Her helpers need to understand and discern how and when she is struggling before a meltdown occurs. Our son needs to be handled very carefully when it comes to discipline. His background has led to him feeling acute shame, so teaching staff have to be aware of this while still maintaining boundaries.

The UK has come such a long way with understanding diversity but “different thinkers” are still yet to be heard or understood.Until everyone understands the invisible impairments our children have, the fight goes on. I am not alone, as Ofsted’s new report on councils’ progress so far on SEN shows.

I hope the extra funding will ensure councils fully implement one of the most positive aspects of the government’s reforms – the requirement that children and parents must be involved in decisions about how best to meet special needs. This is important because those with neurological conditions like my children until now have not always had their opinions listened to.

Imogen’s teacher this year has had no training in autism and had to research this herself. We hope the new legislation will lead to all schools and teachers having proper training. So far, the response from many schools and councils has been positive. What’s needed now is a change in schools’ attitudes to SEN to a culture which understands and celebrates those with different thought patterns and an appreciation that our children are not a burden but an asset.

Life through the eyes of a boy with autism: One devoted mother’s photographic journey to help others understand the daily challenges of those with the condition

  • Stanley was diagnosed as being autistic at the age of three-and-a-half
  • His mother Rosie Barnes embarked on a 14-year project, the culmination of which is her book Understanding Stanley – Looking Through Autism
  • The documentary photographer says she hopes the book will help others learn more about the condition and to appreciate its complex nature 

‘Tiny plane’. A matter-of-fact statement from the mouth of a child, moments after he spots a 747 thundering through the skies miles above his head.

To many, it is just that, a statement describing the here and now, an immediate and accurate reaction to what he can see.

But for the documentary photographer Rosie Barnes, the comment from her 18-month-old son Stanley, as they lay in the grass 16 years ago, was to prove poignant.

It sparked a 14-year project, the culmination of which is a beautiful new book, Understanding Stanley – Looking Through Autism.

Each page adorned with stunning photographs, it  gives a uniquely visual insight into Stanley’s world – as well as drawing on the experiences of others on the autism spectrum.

The book aims to ‘get under the skin of what it feels like to be autistic’, trying to open people’s eyes to how it feels to live with it.

All Rosie hopes for, through publishing her book, is to generate an ‘understanding and acceptance’ of the condition for Stanley and others.

Photographer Rosie Barnes' new book Understanding Stanley - Looking Through Autism, is an attempt to explain her son Stanley's world as he lives with autism

Photographer Rosie Barnes’ new book Understanding Stanley – Looking Through Autism, is an attempt to explain her son Stanley’s world as he lives with autism

'At the time that I took this picture, in my mind he was going to grow up to be one sort of person. Then it kind of changed. He isn’t that person – he’s a different person. But no less wonderful,' said Rosie

‘At the time that I took this picture, in my mind he was going to grow up to be one sort of person. Then it kind of changed. He isn’t that person – he’s a different person. But no less wonderful,’ said Rosie

Through 64 stunning photographs, portraits of Stanley and images representing a range of autistic characteristics, the book shares the experiences of others on the spectrum too.

It has received high praise from academics, those on the autism spectrum as well as two charities, the National Autistic Society and Ambitious About Autism.

One anonymous visitor to the Understanding Stanley exhibition branded the book ‘utterley enlightening’, while another added: ‘Meaningful beyond measure.’

The project was born more than a decade ago, Rosie told MailOnline.

‘We were lying on the grass together one day and a 747 flew over. Stanley said “tiny plane” and I thought to myself no, that’s not a tiny plane, that’s an enormous plane.

‘It made me wonder how a child understands and decodes the world they find themselves inhabiting.

‘How much do we presume that they just ‘get’? At what point, what age, do they understand what is real, what is fake?

‘I started to make a series of images that explored themes of scale, reality, perception, emotion – with Stanley in mind.

‘Crucially, I was wondering if everyone’s experience of a situation is the same as others. And how would we know if this was or wasn’t the case?’

What Rosie did not know then was that 18 months later her bright, joyful son would start to display behaviour that was at odds with his peers.

At three-and-a-half, Stanley was diagnosed with autism.

On that day, she embarked on a journey to understand and appreciate the world through the eyes of her eldest son.

‘How did life really feel for him and how did it differ from the life I experience,’ she said.

Recalling Stanley’s diagnosis, Rosie said: ‘In 2001, a year after Stanley was diagnosed, I was looking back at the first set of pictures, A Boy’s Eye View, and it struck me just how poignant and incredibly ironic those images were.

'Tiny plane'. A matter-of-fact statement from the mouth of a child, moments after he spots a 747 thundering through the skies miles above his head. To many, it is just that, a statement describing the here and now. But for the documentary photographer Rosie, the comment from 18-month-old son Stanley, as they lay in the grass 16 years ago, was to prove poignant

‘Tiny plane’. A matter-of-fact statement from the mouth of a child, moments after he spots a 747 thundering through the skies miles above his head. To many, it is just that, a statement describing the here and now. But for the documentary photographer Rosie, the comment from 18-month-old son Stanley, as they lay in the grass 16 years ago, was to prove poignant

'Stanley has difficulties with personal space,' said Rosie. 'He doesn’t like people getting too close to him and will always wander off looking for his own space. He often sits up and eats his supper after everyone else has finished and got down. Conversely, he will sometimes walk right up to children and speak to them with his nose practically touching theirs. Even the very youngest of them have an intuitive understanding of social codes and know something’s not right. He doesn’t,' said Rosie

‘Stanley has difficulties with personal space,’ said Rosie. ‘He doesn’t like people getting too close to him and will always wander off looking for his own space. He often sits up and eats his supper after everyone else has finished and got down. Conversely, he will sometimes walk right up to children and speak to them with his nose practically touching theirs. Even the very youngest of them have an intuitive understanding of social codes and know something’s not right. He doesn’t,’ said Rosie

‘Stanley was indeed living in a very confusing world, much more complex, illogical and at times frightening than I could possibly understand.

‘And those same themes with which I’d grappled at the outset are still very much part of Stanley’s world now that he is a young man.’

ACCLAIM AND PRAISE FOR UNDERSTANDING STANLEY

Professor Simon Baron-Cohen, director of Autism Research Center at Cambridge University, said: ‘Through this unique and remarkable photo-biography, Rosie Barnes lets us into the world of her son Stanley.

‘In doing this she acts as his voice, showing us what makes him happy, what interests him and what makes him stressed.

‘Most importantly this beautiful book will raise awareness of how autism really affects those on the autistic spectrum and their families.’

Professor Uta Frith, cognitive neuroscientist and author of books on autism, said: ‘I am full of admiration for this book… a marvellous insight into autism.

‘Understanding Stanley says in pictures what can barely be said in words… Rosie has managed to convey what I call the “The beautiful otherness of the autistic mind”.’

An anonymous visitor to the exhibition in Frankfurt, Germany, said: Amazing. So very few questions and so many answers.’

An anonymous visitor in Hereford, in the UK, added: ‘Never had an insight like this into autism. Meaningful beyond measure.’

And another visitor to the exhibition, in Hereford, added: ‘Stunning, thought-provoking and more than that.

‘It really meant something and means something. The bit about feeling like an alien and wishing someone would take you home, I remember feeling like that.

‘It’s good that something like this can help people understand that different people like me, do actually feel differently.’

In Understanding Stanley – Looking Through Autism, the mother-of-two set out to build on the previous set of images and also to draw inspiration from the experiences of others.

She said she was mindful to include the insights of others.

The book gives a unique, moving and very accessible insight into Stanley’s world and that of others who are on the autism spectrum, young and old.

Autism is an incurable, developmental disorder that affects the individual’s ability to communicate and relate to others and the world around them.

It is a serious and disabling, lifelong condition.

A child on the autism spectrum will grow up to become an adult on the autism spectrum.

‘You may have seen many of the very positive TV shows about individuals with spectacular gifts and abilities and think it’s quite a “cool’ thing to have,’ Rosie said. ‘This is true in a very tiny percentage of cases.

‘The fact is that the vast majority of people living with autism find everyday life an exhausting and confusing struggle.

‘That’s not to say that it is a tragedy or indeed that they’d like to be rid of their autism – because it makes them who they are.

‘It’s just that everyone living with autism needs understanding and acceptance, wherever they are on the spectrum.

‘It’s pretty commonplace these days, but that doesn’t make it any easier to be living with.

‘Obviously every child is different, but those affected do share similar characteristics.

‘Common areas where those on the autism spectrum appear different to their peers include communication, social interaction and general flexibility of thought, sometimes referred to as social imagination.

‘The fourth area, not often recognised, is having sensory experiences outside of the ‘normal’ range, Rosie said.

This, she added, can ‘hugely affect the first three’.

'It feels like I’m trapped in a world where everyone has their backs to me,' said Nita Jackson, on the autism spectrum

‘It feels like I’m trapped in a world where everyone has their backs to me,’ said Nita Jackson, on the autism spectrum

‘In fact, some would argue that the sensory issues can contribute to the other three to such an extent that sensory differences should be top of the list,’ she said.

‘For example, if you can’t stand the buzz and glare of strip lighting you won’t be able to go to a supermarket; if you can’t bare the smell of people you will avoid social situations.

‘All these four areas are crucially important.

WHAT IS AUTISM?

Autism is a life-long developmental disability that affects how a person communicates with, and relates to, other people.

It also affects how they make sense of the world around them.

It is a spectrum condition, which means, while all people with autism share certain difficulties, their condition will affect them in different and unique ways.

Some people with autism are able to live relatively indepdendent lives, but others may have additional learning disabilites and need a lifetime of specialist support.

Source: The National Autistic Society

‘They are the key to just getting along with people, having relationships, being able to express yourself and make yourself understood, progressing through life, upholding your self-esteem, living independently, getting a job and just being able to cope with day to day life.’

The devoted mother said all she wishes for Stanley is ‘understanding and acceptance’ of his condition.

‘It is the essential foundation to build help and support upon,’ she said. ‘It is precisely what I wish for Stanley. It is precisely what this book is about.’

There are hundreds of books published about autism, Asperger’s (Autistic Spectrum Disorders) but the vast majority are heavy text books, that can be difficult to understand.

‘They are of immense value,’ Rosie said.

But she cautions that they are largely ‘preaching to the converted’, their readers already people with a good understanding of autism and an acceptance of the condition.

‘It’s everyone else out there with whom we share this world – who we stand in the popcorn queue at the cinema with, who need help in understanding this highly complex and invisible condition,’ Rosie said.

‘These people will mostly never find the time or the inclination to sit down and read a text book about autism. I think we’re fundamentally missing something.’

'If I jump up and down on a train, I’m in the same place, but everyone else has moved on,' said one anonymous person on the autism spectrum quoted in the new book 

‘If I jump up and down on a train, I’m in the same place, but everyone else has moved on,’ said one anonymous person on the autism spectrum quoted in the new book

Rosie said: 'Stanley needs a very clearly defined framework and fixed personal routines to keep him calm and happy. He seems suspended in this picture. Not swinging, but still and serene'

Rosie said: ‘Stanley needs a very clearly defined framework and fixed personal routines to keep him calm and happy. He seems suspended in this picture. Not swinging, but still and serene’

'There is a truth in the tale of The Ugly Duckling. If you are a swan and unrecognised as such, living with a duck family that thinks you are a duck, expects you to behave like a duck and at times might coerce you to be more like a duck – you have a problem… You will have poor self-esteem and the need to isolate yourself at the same time that you try not to be isolated. Indeed, if things get bad enough, you will eventually decide that further attempts at communication will only bring on more trouble, so you stop trying to communicate,' said Bob Morris, on the autism spectrum

‘There is a truth in the tale of The Ugly Duckling. If you are a swan and unrecognised as such, living with a duck family that thinks you are a duck, expects you to behave like a duck and at times might coerce you to be more like a duck – you have a problem… You will have poor self-esteem and the need to isolate yourself at the same time that you try not to be isolated. Indeed, if things get bad enough, you will eventually decide that further attempts at communication will only bring on more trouble, so you stop trying to communicate,’ said Bob Morris, on the autism spectrum

Her motivation in creating Understanding Stanley, was to ‘create a new kind of visual language for autism’, she reveals.

‘This is a quiet and peaceful book about autism,’ she said. ‘A place to start that has space to breathe. Sometimes a lot of words are not where you need to begin.’

Her aim – ‘to get under the skin of what it might feel like to be autistic’ while asking little effort from the reader.

‘I am no expert, I am Stanley’s mum, but as a photographer I do know that pictures can resonate and stay with you in a way that text alone cannot,’ she said.

The fact is that the vast majority of people living with autism find everyday life an exhausting and confusing struggle
Rosie Barnes, Stanley’s mother

‘They can reach people at an emotional level, which is a far more important and powerful place to start.

‘I believe to convey even just a feeling of what this condition is like, may just help.

‘This is not a “what to do” book. It’s a “what it might feel like” book.

‘Knowledge and awareness of autism has come a long way, even in the past five years.

‘Most people by now have heard of it and recognise that it’s not all that uncommon, but when pressed, still don’t really get it.

‘Why? Well, it’s incredibly complex, it’s completely invisible, the spectrum is extremely wide and as they say, “meet one person with autism and you’ve met one person with autism”.

‘And autism isn’t just one thing but a culmination of many different things going on to create the autistic personality.

‘So many people had said to me, “Oh he’s OK isn’t he, he’s only mildly affected”, or “he looks fine to me, you’d never know”. The latter really struck me.

‘Yes he really does look fine, healthy and handsome. He certainly doesn’t look any different from any other child or young man.

‘There is no visible sign. No wheelchair, no hearing aid, nothing at all that will act as a clue to anyone who might be looking at him, judging him.

‘And because there’s nothing to “see”, then he is surely expected to be and act and communicate in a ‘normal’ fashion.’

But for Stanley, that is just not possible.

Sonia, a specialist autism teacher, said: 'Everyone is meant to know the rules in life for different situations. But there is no rule book to follow and sometimes no clues at all. These young people are left all at sea trying so hard to get things right but so often getting it wrong because there is no clear sign or they misread the signs because they appear distorted. And that can make them feel so stressed and so worthless. How awful to be thinking all the time that you’ve got it wrong – again. I can’t begin to imagine how that must feel'

Sonia, a specialist autism teacher, said: ‘Everyone is meant to know the rules in life for different situations. But there is no rule book to follow and sometimes no clues at all. These young people are left all at sea trying so hard to get things right but so often getting it wrong because there is no clear sign or they misread the signs because they appear distorted. And that can make them feel so stressed and so worthless. How awful to be thinking all the time that you’ve got it wrong – again. I can’t begin to imagine how that must feel’

BEAUTIFUL PICTURES CONVEY ‘ALIENATING DIFFERENCES’

Understanding Stanley has been endorsed by theNational Autistic Society (NAS) and the charityAmbitious About Autism (AAA).

President of the NAS, Jane Asher, said: ‘Autism and its cousin Asperger’s Syndrome are extremely complex conditions and their effects can be very difficult to put across.

‘Even those affected themselves can find it almost impossible to explain how they feel.

‘Rosie’s pictures are not only beautiful works in their own right, but sensitively convey some of the alienating differences of perception that those with autism have to live with, and she manages to show us – through some deceptively simple images – just how much the rest of us take for granted in the way we interact with the world around us.’

And Jolanta Lasota, chief executive of AAA,  added: ‘Understanding Stanley is a beautifully crafted collection of images.

‘They capture Stanley’s unique take on the world, but also Rosie’s journey as a mother, using her camera to document and understand her son’s autism.

‘Her search for knowledge, and the images that she has created, are brilliantly complemented by the quotes from people with autism.

‘Their words give added meaning to Rosie’s photography and offer an important insight into what a life with autism is really like.’

‘His thought patterns, his way of communicating, his priorities can be quite different from those of his parents, and his brother, as well as his peers.

‘What someone on the spectrum considers interesting, important, beautiful, easy, fun and safe, can be at complete odds and is often in conflict with those people deemed ‘neuro-typical’, Rosie explained.

She said: ‘These are the things you cannot ‘see’. So, whatever you call it, ask anyone who is living with it and they will say there is nothing ‘mild’ about it.

‘As a photographer and mother trying once again to understand her son from an entirely new and puzzling perspective, I set out to photograph his world again, to try to get under the skin of how life might be for him.

‘To explore and communicate in a new language, the differences in perception that those with autism have to live with on a daily basis.

‘But how do you make people aware and accepting of something so complex, so difficult to explain or understand, let alone see?

‘How could I make the invisible visible? How could I help people to feel, not just to think? Understanding Stanley is my attempt.

‘So, if you’re the person who is sitting on the tube or standing at the bus stop next to Stanley tomorrow, I’m hoping, having looked through this book, that you may not be frightened of his unusual behaviour (he might be smiling to himself or running his fingers down the window) and just accept him.

‘I’m hoping that you might not get up and move to the next carriage, which could easily damage his already fragile self-esteem.

‘You couldn’t be in the company of someone who is less likely to hurt or offend you.

‘And I’m hoping this book will also teach us something about ourselves – how much we take for granted in the way we interact with the world around us and how we should never make assumptions.

‘I very much believe that being autistic is not wrong, it is just a different way of experiencing life. I think it is absolutely OK to be different, but being different is definitely not easy.’

Stanley is now nearly 18 and is at school close to the family home in South East London.

I very much believe that being autistic is not wrong, it is just a different way of experiencing life. I think it is absolutely OK to be different, but being different is definitely not easy
Rosie Barnes, Stanley’s mother

He is proud of the book, has contributed to it and refers to it as ‘our book’.

Understanding Stanley has been endorsed by a variety of well known individuals from both the autism and photography world and is supported by the UK charities, The National Autistic Society and Ambitious About Autism.

‘With one in 68 of us now being diagnosed as on the autism spectrum, that figure represents a huge amount of people within our families, our schools, our places of work and our communities, who need our greater understanding and acceptance,’ Rosie said. ‘I think Understanding Stanley is an important book for every one of us.’

The book is endorsed by two charities, The National Autistic Society and Ambitious About Autism.

To buy a copy of Understanding Stanley for £15 (plus P&P for UK and overseas), visit Rosie’s website here.

Understanding Stanley has been supported by the UK charities, The National Autistic Society and Ambitious About Autism

Understanding Stanley has been supported by the UK charities, The National Autistic Society and Ambitious About Autism

How autistic children perceive the world (Related)

Read more: http://www.dailymail.co.uk/health/article-2771107/Life-eyes-boy-autism-One-devoted-mother-s-photographic-journey-help-understand-daily-challenges-condition.html#ixzz3MCBtL6rq

‘Facebook refused to ban’ autism hate page

Upset parents begged the social network site to remove the Moms Against Autistic Children but were left disappointed

Facebook generic (Pic:Rex Features)

Facebook have been accused of refusing to ban a vile page attacking autistic kids, despite angry protests.

Upset parents who begged the social network site to remove the Moms Against Autistic Children thread were told it did not “violate our community standards”.

Katie Fitzgerald, of St Helens, Merseyside, was one of them.

The 27-year-old, whose son Riley-Jack, three, is autistic, said: “I went on for advice and was faced with all that horrible stuff. I could not believe it.”

The page was finally taken down after thousands of complaints – and intervention by the National Autistic Society.

But other insensitive copycat pages have since appeared.

NAS policy chief Sarah Lambert said: “This kind of hate speech is deeply offensive to those living with autism.”

Parents’ fury after autistic daughter is ‘left stranded’ on side of the road by cabbie

Denton Community College student Lucy Devlin had to make her own way to school after she was left by the road by a driver wanting more money for a fixed fare, it is claimed

Lucy Devlin with her dad Peter, mum Leanne and sister Maisy

The parents of an autistic 11-year-old who struggles with changes to her routine have slammed a cabbie who they say left her by the roadside to make her own way to school.

Peter and Leanne Devlin booked the transport for Lucy on days when they were unable to take her themselves.

After explaining her condition and agreeing a fixed price to be paid at the start of each trip, they say they were confident of leaving her in the care of a local firm.

But the couple were horrified when a crying Lucy, who is in the first year of DentonCommunity College, called saying she had been left stranded because the driver wanted more money.

Peter, 46,who has chronic lymphocytic leukaemia which leaves him constantly exhausted, was at home in Denton with younger daughter Maisy while hospital administrator Leanne was working.

He said: “Lucy struggles with crowded spaces so public transport is not an option and we decided to put her in a taxi which picked her up from home and dropped her at the school door. Notes should flag up on their system.

“There’s an agreed fee of £4 which I pay every morning so I don’t understand why there was a meter running.

“She said the driver asked her to get out because her £4 was up and dropped her at the wrong side of a main junction.

“It’s a quarter of a mile from the school and a change in her routine. All I wanted was my daughter to be safe but she was absolutely beside herself and it sent me into orbit because there was nothing I could do.”

Lucy made it to school after following Peter’s directions but he says he won’t trust cabs again. He has complained to Tameside council’s licensing department which confirmed it is investigating.

He added: “For the sake of a few pence extra that I would have happily paid, it makes me angry. I trusted them with my child and I think as a basic they should get her to the destination.”

Peter and Leanne have been booking the cabs through Call-a-Car in Denton and say they have never had problems before.

Owner Amanat Ali said he was waiting to hear from the council and was conducting his own internal investigation.

He said: “We have been dealing with children with special needs for seven years and this is the first time we’ve received a complaint like this. We take it very seriously and need to get to the bottom of what happened so it doesn’t happen again.

“If the driver has forced the child out of his taxi then I am fully behind licensing and any action they take. We do not tolerate or condone that type of behaviour from our drivers.”

Is wearing make-up harmful during pregnancy? Exposure to beauty chemicals is linked with lower IQ in children, study claims

  • Controversial study focuses on phthalate chemicals found in make-up
  • Phthalates are man-made chemicals thought to interfere with hormones
  • They can be found in everything from cosmetics to shower curtains
  • US study found exposure to the highest levels of two phthalate chemicals led to a lowering of IQ scores at age seven by more than six points
  • The scientists claim the link remained after taking account of known factors that can influence child IQ, such as the mother’s intelligence
  • Study only looked at 328 cases, and further studies need to be carried out on larger groups to confirm results

A controversial study claims to have found a link between wearing make-up during pregnancy and lower IQ scores in children.

Exposure to the highest levels of two phthalate chemicals led to a lowering of IQ scores at age seven by more than six points, US scientists found.

The scientists claim the link remained after taking account of known factors that can influence child IQ, such as the mother’s intelligence and the quality of the home environment.

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Exposure to the highest levels of two phthalate chemicals, which can be found in lipstick and other cosmetics, led to a lowering of IQ scores at age seven by more than six points, US scientists found

Exposure to the highest levels of two phthalate chemicals, which can be found in lipstick and other cosmetics, led to a lowering of IQ scores at age seven by more than six points, US scientists found

Phthalates are man-made chemicals thought to interfere with the natural hormones that are crucial to overall health.

They are found in everything from PVC flooring and shower curtains to car dashboards – and may also be in our food. Tiny particles can enter our systems either through breathing or eating.

Researchers in the New York investigated four phthalates and demonstrated an association with two, known as DnBP and DiBP.

Both are found in a wide range of consumer products including dryer sheets, vinyl fabrics, lipstick, hairspray, nail polish and some soaps.

Children of mothers whose exposure to DnBP and DiBP was in the top 25 per cent had IQ scores 6.6 and 7.6 points lower, respectively, than those of mothers exposed to the lowest concentrations

Children of mothers whose exposure to DnBP and DiBP was in the top 25 per cent had IQ scores 6.6 and 7.6 points lower, respectively, than those of mothers exposed to the lowest concentrations

‘The magnitude of these IQ differences is troubling,’ said Professor Robin Whyatt, from Columbia University’s Mailman School of Public Health, who took part in the study.

‘A six or seven-point decline in IQ may have substantial consequences for academic achievement and occupational potential.’

WHAT ARE PHTHALATES?

Phthalates are man-made chemicals thought to interfere with the natural hormones that are crucial to overall health.

They are found in everything from PVC flooring and shower curtains to car dashboards – and may also be in our food. Tiny particles can enter our systems either through breathing or eating.

In make-up, they are used by manufacturers to help dissolve other ingredients into a consistent solution, such as making nail polish less brittle.

Previous studies have linked them to diabetes and asthma. They have also been blamed for feminising the brains of baby boys and last year the World Health Organisation warned they have ‘serious implications for health.

The scientists assessed the pthalate exposure of 328 New York City women and their children, all of whom were from low-income communities.

Break down chemicals from the compounds left after they had been processed in the body were measured in urine samples during the last three months of pregnancy.

Children of mothers whose exposure to DnBP and DiBP was in the top 25 per cent had IQ scores 6.6 and 7.6 points lower, respectively, than those of mothers exposed to the lowest concentrations.

Associations were also seen for specific aspects of IQ, such as perceptual reasoning, working memory and processing speed.

None of the women had been exposed to unusual levels of the chemicals, the researchers said, whose findings were reported in the online journal Public Library of Science ONE.

Lead author Dr Pam Factor-Litvak, also from Columbia University, said: ‘Pregnant women across the United States are exposed to phthalates almost daily, many at levels similar to those that we found were associated with substantial reductions in the IQ of children.

‘While there has been some regulation to ban phthalates from toys of young children, there is no legislation governing exposure during pregnancy, which is likely the most sensitive period for brain development.

‘Indeed, phthalates are not required to be on product labelling.’

The scientists urged pregnant women not to microwave food in plastic containers, to avoid scented products as much as possible, and not to use certain recyclable plastics.

In an earlier study, the same researchers found negative associations between exposure to DnBP and DiBP in the womb and children’s mental and motor development and behaviour at age three.

What are phthalates?

Earlier this year, the same group found that babies exposed to high levels of phthalates while in the womb are up to 78 per cent more at risk of getting asthma.

Dr Whyatt, said: ‘These chemicals are very widely used in very high volume and they are not generally listed on labels.

‘There are some simple steps families can take. Avoid using plastic containers and as much as you can store your food in glass jars in the fridge.’

She also suggested women check their make-up on the internet for phthalates.

Phthalates are thought to be ‘endocrine-disrupting chemicals’, or EDCs, capable of interfering with the way our glands produce hormones.

The cosmetics industry is particularly sensitive to suggestions that some ingredients might be EDCs.

In 2012, the Danish Consumer Council asked manufacturers to stop using 17 EDCs.

The makers of 58 brands agreed, but companies behind some of the world’s biggest brands did not, and found their products named and shamed by the council.

Last year a World Health Organisation study concluded, to do nothing now was to ignore a vital lesson from the past.

We should ‘ban chemicals in order to reduce exposure early, even when there are significant but incomplete data but before there is significant and long-lasting harm’.

Not all experts agree — in September, 18 editors of pharmacology and toxicology journals signed a letter saying the EU’s proposals were driven by ‘scientifically unfounded precaution’, defying ‘common sense, well-established science and risk assessment principles’.

It has since been revealed that 17 of the 18 editors had worked with the chemical, pharmaceutical, cosmetic, tobacco, pesticide or biotechnology industries.

CHEMICALS IN PLASTIC ‘ARE MAKING WOMEN LESS INTERESTED IN SEX’

A recent study linked low libido with the additives used to soften plastics which are found in every home

A recent study linked low libido with the additives used to soften plastics which are found in every home

Chemicals found in PVC flooring, plastic shower curtains, processed food and other trappings of modern life may be sapping women’s interest in sex.

A study in Otober linked low libido with the additives used to soften plastics which are found in every home.

Women with the highest levels of phthalates in their bodies were more than twice as likely to say ‘not tonight dear’ as those with the lowest amounts.

The research, presented at the American Society for Reproductive Medicine’s annual conference in Honolulu, suggests phthalates are doing psychological, as well as physical, damage.

In the first study of its kind, Dr Emily Barrett, of the University of Rochester School of Medicine in the US, measured levels of phthalates in the urine of 360 pregnant women in their 20s and 30s.

She also asked them how often they lost interest in sex in the months leading up to their pregnancy.

Those with the most phthalates in their bodies were two and a half times as likely to say they had frequently lacked interest in sex as those with the least.

She said: ‘It is interesting because these are chemicals that we are all exposed to every day. They are throughout our environment and every person studied showed measurable levels.’

However relationship expert Dr Pam Spurr said many factors can influence a woman’s libido, including smoking, medication, having a baby or changing jobs.

A spokesman for the Chemical Industries Association, which represents manufacturers, said: ‘We are not aware of any globally accepted tests which can yet measure the effect chemical exposure may have on libido.’

Read more: http://www.dailymail.co.uk/sciencetech/article-2868784/Is-wearing-make-harmful-pregnancy-Exposure-beauty-chemicals-linked-lower-IQ-children-study-claims.html#ixzz3LWjS6543