Rosie Barnes is a documentary photographer who has two sons on the autism spectrum. Her eldest son Stanley inspired her moving body of work, which is now a photobook, Understanding Stanley - Looking Through Autism. In this profile, Rosie shares her perspective on parenting, celebrating differences, and reaching beyond the "autism bubble."
Tell us about yourself.
I’m a documentary photographer and live in London, England, right in the centre near London Bridge. I grew up mostly in rural southern England in the 60s/70s. I found school uninspiring and spent most of my spare time from age 12 taking photos. My school didn’t do photography and because I wasn’t good at "art", it was this sort of secret thing I spent all my time doing but didn’t tell anyone. It wasn’t until I was in my late 20s that I took a part time photography course and then went on to do a degree. I’ve since had work exhibited in various museums, photo festivals, and exhibitions in the United Kingdom and across Europe and have been commissioned to shoot stories for publications like the Guardian Magazine and the Financial Times. I’m interested in themes around disability, difference, groups that rarely have a voice, and also our relationship with the natural world. Last year, I made a short documentary film for a charity here in London that helps young autistic Londoners into supported work placements. I’m also just beginning a project about women on the spectrum, who I believe are the last group that people believe can possibly be autistic, especially if they are educated and have careers, relationships, families of their own. I also sing in a folk choir, have various voluntary roles, run a film club, and knit!
When and how were your sons diagnosed with autism?
Stanley was a joyful baby. After his first few weeks he didn’t really cry at all, and there was nothing about his development that seemed worrisome or at odds with his peers. In fact he seemed in many ways to be advanced, speaking early, and picking things up very quickly and was happy. He always loved (and still does) stories and before he walked, he would drag piles of books to the sofa and we’d spend hours together just reading through them. When he was about 3 though, we noticed that a lot (but not all) of his language was actually borrowed chunks and phrases from his favourite books. His nursery teacher also flagged up some concerns and he was formally diagnosed with ASD at 3.5 years old. Stanley is 21 now and has quite significant learning difficulties, but he is doing really well, is at college and enjoys floristry and art. He has remained a story-loving, kind and gentle soul, but does have a great deal of anxiety.
Our younger son is at university. From the outset he was way ahead and had plentiful skills and talents. He was sensitive, observant, and intelligent but displayed significant oppositional behaviour. He was fiercely independent and defiant, excelled at sports, particularly tennis, football (soccer) and cricket and seemed to find school work easy. We put his often challenging behaviour down to him wanting more of our attention. But actually Stanley didn’t really take attention from him, so it was something I found very hard to understand. Less than a year ago, at 18, he was finally diagnosed as also being on the spectrum. He’d become so good at masking, but things had just got too much for him. It seems amazing that we just couldn’t see it in him, but he and Stanley are very different. I do have guilt that he was also struggling and we were not able to support him as effectively as if we had known sooner about his diagnosis. Hindsight is a great thing.
Your photobook "Understanding Stanley - Looking through autism" features beautiful images taken over a period of 14 years. how did this series come to be?
When Stanley was 18 months old I made a piece of work called A Boy’s Eye View. I was lying on the lawn with Stanley one day and he pointed at a 747 Jumbo Jet in the sky and said “tiny plane.” It really made me think about how a young child understands and decodes the world that they find themselves inhabiting. I was looking at themes of scale, reality, emotion, perspective, and perception from the viewpoint of a toddler.
I was always struck by the phrase I often heard when I told anyone about his diagnosis: “Oh really? He looks fine to me," they’d say. Or, “You’d never know." Or, “Well it’s OK because he’s only mildly affected." It really made me think about the fact that there are no visual signs of autism and I wondered how anybody could begin to understand or support Stanley, and others like him, if there was nothing to "see."
I decided to try to make the invisible visible and to try specifically to reach out beyond the "autism bubble" with something visual, because I think that is where the understanding and acceptance is most needed. There are so many excellent books and articles out there written about autism, but with the best will in the world, I believe they are only being read by people who are already full of motivation to understand, support and accept. That is what I mean by the "bubble." It’s the person standing at the bus stop or in the popcorn queue at the cinema, who in many ways is the person who most needs help in understanding, and that person is not realistically about to go out and buy a text-heavy book about autism to learn more. I interviewed adults on the spectrum who were able to express themselves and used their thoughts, memories and perspective as the text to support the images.
Understanding Stanley has been reviewed widely in the press and the book has sold across all 5 continents. The irony is that Stanley at 21 still struggles with elements of all those weighty themes I’d grappled with in A Boy’s Eye View.
I have been invited to speak in a huge variety of settings and had some incredible feedback from within and outside the autism and photography communities, which was what I was trying to achieve. I’ve had many emails from people who’ve been able to use it as a useful tool for helping others in their family understand, without the need for too much reading. I wanted it to be a quiet and peaceful sort of book and for everyone, all of us, to be able to relate to it on some level, including helping those who are not on the spectrum to reflect on just how much many of us take for granted in the way we interact with the world around us.
N.B. It is worth noting that my youngest son’s perspective was very much considered in the book — as that of a sibling. Now, post publication, he has his own diagnosis, which in some respects puts a slightly different light on things.
What is one of your favorite images from the series and why?
I think my favourite image has to be the one of the swan with its head under water, as I think it’s a beautiful and ambiguous image in its own right. But it also led me to the idea that I could try to put across autism in a visual and poetic way. Just after I’d taken the image, I was reading a book by Tony Atwood and in it was a quote from an autistic man, Bob Morris, who related being autistic and trying to fit in, to the tale of "The Ugly Duckling"...
His words are so eloquently put and the image sat with the words in such a powerful but beautiful way. So the whole body of work really came from that image.
WHAT ADVICE DO YOU HAVE FOR OTHER PARENTS RAISING CHILDREN ON THE AUTISM SPECTRUM? and WHAT’S THE GREATEST LESSON YOU HAVE LEARNED as a parent?
You can’t be and do everything, it’s just not possible. Sometimes it feels as a parent of an individual on the spectrum, that you have to be a teacher, lawyer, psychologist, behavioural therapist, nutritional therapist, the list goes on and on. Reach out as far and wide as you can and do try to let go as fast as possible to the inevitable feelings of "dreams unfulfilled." This may sound easy, but that feeling can use up so much needed physical and emotional energy. You have no idea how things will turn out — nobody does. Try to keep going with as positive an attitude as possible. Take the time to meet, listen and read accounts written by autistic adults. They most likely have the answers to your questions, more so than the ‘professionals’.
Above all else, don’t use up energy being upset at other people who you think might be looking at or judging you or your child. I am horrified by some things I’ve read online, people so angry with others for perceived misunderstandings or judgements. I don’t expect everyone to understand, how could they? It’s not realistic. Autism is such a complex thing with every individual being so unique in their talents/challenges/interests/outlook etc that why on earth would anyone expect everyone to understand that. I do expect people to be kind, but I don’t expect them to have a high level of understanding. I don’t get offended when people ask a question, which might not be worded sensitively — at least they’re interested. And I don’t get offended when people look, in fact I feel proud. Let’s invite people in and welcome them to thinking about autism, let’s not push them away. I’ve seen horrific things like T-shirts and baseball caps with slogans like “I’m autistic, what’s your problem." How can this possibly help anyone?!
WHAT ARE YOUR HOPES FOR YOUR sonS’ FUTURES AND FOR AUTISM AWARENESS?
In many ways, I think this is a "good time" to be autistic. The understanding and acceptance of people’s differences, particularly with autism, have come a very long way in the past 15 years. Social media has helped and there are so many autistic bloggers, online forums, and social groups too for families and individuals to express themselves and make contact. But there is still a long way to go, especially with adult services and finding meaningful employment. Or if employment is not a realistic option, then some meaningful and enjoyable, supported occupations for the duration of their lives.
I hope that both my sons can lead fulfilling and purposeful lives without barriers, at their own level, and can feel accepted for who they are and not be made to feel inferior in any way. I would like them to have a strong sense of self that is uncompromised. I hope they can feel that their differences can be accommodated and actually celebrated in society.
I think it’s so important that we all recognise that people on the autism spectrum are actually different. Their perception, outlook, and thinking is different (and often has far greater honesty and humanity), and no amount of "therapy" or "correction" or persuasion will change that. And that there’s nothing wrong with being different, but being different (with regards to the autism spectrum) is definitely not easy. It’s not like having pink hair or a tattoo. It’s a different type of different.
I hope that people will stop using the term “Them” when referring to anyone on the spectrum. I really hate it. I hear it all the time. In fact I think it is worth people considering that neuro-typicals are much more similar to one another as a group, than the group of individuals who are on the spectrum, this in part is because of vast differences in sensory perceptions that affect so many areas of a person’s lived experience.
I am fully aware of the very wide spectrum of autism and can only really relate to the experience that I have had with my family. In my book I have tried to be positive, without being too positive and realistic, without being too negative. I do not necessarily "celebrate" autism because it does present with challenges for everyone involved, but I do celebrate my boys for all their beauty and unique outlook, their honesty, their striving to do the best they can in their daily occupations and lives.