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

Part of my blog for The Justice Gap

http://thejusticegap.com/News/a-bitter-pill-the-epilim-familes-fight-for-justice/

Above is a link that explains how all the children affected by FACS SYNDROME (at the time 6 years ago) tried to take the drug company who make Epilim to court.  This case would have been very successful.  The amount of evidence our solicitors had was overwhelming.  When you read more of the blog, you will realise why I am not only adament with raising awareness of FACS, but also the injustice that all the children affected by the medication have been put through.  Two weeks before trial at the High Courts in London and the case was plugged after such an amount of money wasted.  At the moment with todays economic crisis and Britain being in a recession, why are we in such a mess??? The Government wasting that amount of money is part of the reason, and this is just with one case.  How much more of peoples and taxpayers money are they wasting???? I could give a huge list, but will keep shut……for now.

MUM, WHY AM I DISABLED????

Just had a heartbreaking talk with Lauren.  As shes now 7 shes realizing she cant walk properly.  She just said “mum why am I disabled”  How do you answer your child that??? Being a mum I find the emotional side overpowering.  Lauren knows she has Cerebral Palsy and FACS as when she meets people its the 1st thing she tells  them.  I approached it by saying that when she was in my tummy she wanted to see mummy and daddy so much that she decided to make an early appearance.  She was born at 31 weeks so was very premature, she was so poorly that she was given a blessing from a priest in the baby unit.As we were talking she said “I want my legs to work” shes such a determined little girl and quite independant. I explained to her that I to had a disability ie Epilepsy and she said “awwww mum so were matching” An advert then came on the tv at that point singing “happy feet”, she then said “my feet arent happy” Tears were then in my eyes and she said I want to be normal and run like my friends”

It makes me so so angry….the Government are aware of this condition and always have been.  Is it the fact that the drug company put money into the Government that they want to ignore the thousands of children affected. Course it is, I would love to meet the highest person in Government and have them explain to my babies why they all have this debilitating illness.  Just so upset x x x

Its 1;45 in the morning here, Erins just woke up crying asking for a drink. Ive settled her off to sleep and before I have a few hours sleep need to get Chloes tooth as Im being the tooth fairy. Her and Lauren are at the stage where they want to lose all their teeth cause they know when they lose one…the tooth fairy will arrive.  Anyway I started this blog to share my thoughts, feelings and give an insight to life with 5 children with disabilities.  Looking at the stats on my profile Ive had an overwhelming positive approach from people and Im absolutely astounded that with use of the web and technology FACS Syndrome is hardly known about. That IS going to change. I am absolutely determined that not just for my babies but for the thousands upon thousands it affects children GLOBALLY, that this will become recognised.  I want to thank you for visiting and supporting my blog.  A lot more pictures and information will be added in the next few weeks and I look forward to hopefully speaking and hearing your views. Goodnight everyone and have a fab day ahead of you x x x x x x x x x x x