May 23, 2014

copyright Rosie Barnes
copyright Rosie Barnes

Rosie Barnes, London, UK – is a documentary photographer and author of Understanding Stanley – Looking Through Autism. This is a photobook, made over a period of 14 years, about her eldest son Stanley, now aged 17, who is autistic. Stanley was diagnosed in July 2000. As yet the book is not published, as Rosie needs funding in order to do so, but has set up a Kickstarter campaign for this purpose. £14,700 needs to be pledged (by way of advance-orders) by June 5th. So far £8,050 has been raised. This is part two of our interview with Rosie and the first part can be found here.

Rosie explains that when Stanley was first diagnosed they were given a pack of leaflets to take home, the contents of which just made her feel confused and anxious.

We told Rosie that a picture says a thousand words and that all of the photographs within Understanding Stanley have so much to say and will indeed mean different things to each individual who views them. We asked her if she had a particular favourite from her book.

Stanley on swing, copyright Rosie Barnes
Stanley on swing, copyright Rosie Barnes

“That’s a hard one! I like different ones for different reasons. I suppose if I were allowed to choose one observed portrait of Stanley and one visual metaphor, I’d chose first Stanley on a swing. I love this one because it’s so peaceful and the framework of the swing structure says so much about the framework that he and so many others need to help them stay calm. I also like it because I know that he’s incredibly happy sitting there, but others might think he looks sad. He’s not sad at all, but it just brings up another point about different peoples’ perceptions and interpretations of what they’re seeing and how that interpretation changes depending on who you are. The other would be the swan as that expresses an enormous amount about the effect on an individual who is simply not accepted for who they are”.

Rosie is no longer photographing Stanley and we asked her the reason for this.

“I think Stanley is quite a private person and I wouldn’t want him to be easily recognised now. He is also a normal teenager and dislikes his picture being taken. It was never my intention to make this a life-long portrait study of an individual. None of the images are staged and I haven’t asked him to pose in any of them.”

Rosie has set up a Kickstarter campaign in order to help fund the first print run of her book. People can do this by ordering an advance copy – more can be found here

She also hopes that the low cost of a book like this with 64 colour images, will make it readily available to anyone and everyone who will find it helpful and will be available in libraries.

“I believe Understanding Stanley is an important book for every one of us.”

We asked Rosie if she had a message that she would like to share with our readers.

Plastic figures, copyright  Rosie Barnes
Plastic figures, copyright Rosie Barnes

“I don’t think anyone would ever choose to have a child with autism because it is really really hard for everyone. However, I do think autism is endlessly fascinating (and teaches us a lot about what we take for granted) and it is here. I’m not really interested in talking about causes and so-called ‘cures’, others can do that. For me autism exists and is in our family and I think we have the power and knowledge within the autism ‘community’ to help others to understand that being autistic is not wrong, it’s just another way of experiencing life. Understanding Stanley will really help people, who don’t have time to read text books, understand how being autistic really is different.”

She adds:

“And I think all the text books on the subject are essential, but I don’t think they’re being read by the people who need help in understanding. This book can be passed around freely and doesn’t require an enormous amount of effort on behalf of the reader and could really help. If we don’t reach out to the non-autistic community with something that is easy to digest, then hopes of awareness, understanding and acceptance for those on the spectrum are a long way off…”

We would like to thank Rosie for taking the time to chat with us and we will end with some words from Rosie’s book that sum up beautifully what the book is all about.

“This is not a ‘what to do’ book. It is a ‘what it might feel like’ book and as such, is uniquely powerful”.

Both the NAS and Ambitious about Autism have given positive endorsements for the book and are supporting Rosie in her quest to get the book published.

Rosie’s Kickstarter page can be found here
More of Rosie’s work can be found on her website


About the author 

Jo Worgan

Jo Worgan is a published author, writer and blogger. She has a degree in English Literature. She writes about life with her youngest son who is on the autistic spectrum. Jo tweets (@mummyworgan) and is also a freelance columnist for the Lancaster Guardian. ‘My Life with Tom, Living With Autism‘ is her second book and a culmination of her blog posts, and available on Kindle now, along with her first book, Life on the Spectrum. The Preschool years.

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