“Oh, he looks fine to me, you’d never know” was a comment that really hit home with mum Rosie, when Stanley was diagnosed, aged three. “I realised very quickly that the total invisibility of autism was going to be the biggest challenge of all, making it extremely difficult for other people to understand and accept Stanley and the complexities of his condition.” She says.
Rosie seeks to make the invisible, visible. Understanding Stanley is a potent mix of observed portraits of her son (from aged 18 months to 15 years) and images that represent autistic characteristics and experiences. These images are supported by quotes and comments from those themselves on the autism spectrum (or those who work in supporting them), creating an insightful and deeply moving book that is easy to read and easy to share.
One such comment comes from someone on the autistic spectrum, who says: “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, 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.”
Rosie adds: “There are hundreds of educating text books or text-heavy books published about autism. They tell us what to do, how to do it, how to support, how to stop, how to encourage, how to engage… They are immensely valuable but I feel we’re missing something. What we don’t have access to is something that can really get under the skin of what autism might be like for the individuals who are living with it. Understanding Stanley fills a gap. I really want the reader to feel, not just to think”.
“My motivation was to raise understanding – the foundations upon which acceptance and support can be built. Without understanding, you have nothing. Pictures can speak to people at an emotional level in a way that words alone cannot, which for me is a far more potent outcome and gives people something much more powerful to take away with them”.
Understanding Stanley highlights differences in sensory perception, communication, emotions, social interaction and educational needs and also isolation, sibling and family relationships.
“To my mind, the people we really need to reach are those who are not already steeped in understanding about autism. The people who are never going to sit down and read a text book on the subject. The person standing in the queue at the supermarket or at the bus stop who is staring and making misinformed judgements… If people could just experience a feeling about what this life might be like, I think there would be less reason for them to judge”.
The book has been praised and endorsed by adults on the autism spectrum and professionals working within the fields of autism and photography including Professor Uta Frith, neuroscientist, lifelong work studying autism (presenter of recent BBC2 Horizon – Living with Autism). She said: “I am full of admiration for this book and would recommend it to anyone – a marvellous insight into autism. Understanding Stanley says in pictures what can barely be said in words It poses the right question (what is it like to be autistic?) and never sensationalises. Rosie has managed to convey what I call ‘The beautiful otherness of the autistic mind’”.
Jane Asher, President of The National Autistic Society says: “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 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”.
Rosie needs help to raise the £14,700 needed to fund the first print run of Understanding Stanley.
“My wish is that this book can be affordable to anyone who would like to own it. For the single mother who has two children on the autism spectrum, for the teaching assistant who thinks it might help him better understand the child he is supporting. To make this wish a reality, I have turned to Kickstarter. With your help through pledging to buy a print or a copy of the book in advance, Understanding Stanley can become available all over the world, so its message can reach far and wide and help to change a whole new set of peoples’ attitudes and understanding of autism.”
For more information go to www.kickstarter.com/projects/1605413031/understanding-stanley-looking-through-autism
Written by Rachel Harrison, speech and language therapist, on behalf of Integrated Treatment Services. www.integratedtreatmentservices.co.uk
May 2014
Image rights – www.pixabay.com
