“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”.
This is Braeden.
Braeden is healthy, intelligent, creative, clever, artistic, strong, and fearless, and he’s on the autism spectrum. He is minimally verbal and enjoys creating artwork from his favorite television shows – he prefers preschool shows and is a big fan of Nick Jr. and Disney Jr. He loves the alphabet and numbers. He has to have things a certain way – he gets very upset when someone disrupts his system. (Those are also his toes, and his line, up there in my blog header).
There’s a saying – “Meet one person with autism and you’ve met one person with autism.” This is very true.
This is Dustin.
Dustin is also on the autism spectrum. He’s completely verbal (although it took him longer than other kids to get there), smart, creative, and healthy; he loves to draw (both on paper and on the computer) and update his Tumblr account and play Minecraft. He’s my sensitive kid, full of love and caring for others (so don’t ever let anyone tell you that kids with autism can’t experience empathy).
Understanding Stanley – Looking through Autism is a Kickstarter photography book project that I wholeheartedly support and wanted to share with my readers. Being the mom of two boys on the spectrum, who happen to be at opposite ends of the spectrum, I’m heartbreakingly aware of the lack of awareness about autism that still exists. Even though the current statistics are at 1 in 68, people still don’t understand autism.
“What’s wrong with him? Hey, kid, what’s wrong with you?” This came from an ADULT just a couple of days ago – an adult who presumably is aware of social niceties in a way Braeden is not – as Braeden was lying on the floor kicking and screeching at my cousin’s high school graduation open house. (The adult who made these comments was someone we didn’t know, not a relative). My husband and I tried to explain that Braeden has autism, and being in an unfamiliar place with lots of people he didn’t know was too much for him to process at that point in time. She then wanted to know why we didn’t just medicate him, and kept getting right in front of his face asking him “What’s wrong? What’s the matter?” (which only increased Braeden’s sensory overload and made him more upset – we ultimately had to leave the open house because he was unable to calm down even after some quiet time outside and away from the activity).
I first learned about Understanding Stanley when it was mentioned in an autism parenting group on Facebook that I’m a member of. I thought it was an absolutely brilliant idea – instead of TALKING about autism, it SHOWS autism through beautiful photographs. I know that my children see the world differently than I do. I’ve wished many times that I could get inside Braeden’s head, just for a day, so I could better understand his perceptions and be better able to help him learn to cope with the things that are out of his control. I read books and articles about autism, I watch videos created by people on the spectrum of what various “normal” experiences look and sound like to them, I keep up with the research and statistics and therapies… but Understanding Stanley isn’t (just) for people like me. It’s for people who DON’T have first-hand knowledge of autism.
With 64 colour images, this is not a ‘what to do’ book about autism. It is a ‘what it might feel like’ book about autism. It also allows readers, in a very subtle way, to understand just how much the rest of us take for granted in the way we interact with the world around us.
Understanding Stanley highlights differences in sensory perception, communication, emotions, social interaction and educational needs and also isolation, sibling and family relationships.
The author graciously sent me a PDF proof of her beautiful book, which has just three days and £2,260 left to reach its Kickstarter goal. And I’m in love with this book. Barnes’ photography, rather than being “in your face” about the realities of autism, is much more subtle. On a purely artistic level, these are stunning images. And on an “Autism Mom” level, I love that she’s devoted so many years, so much time and effort, into creating this book in hopes of helping others to understand what it might feel like to be a person living with autism. Intertwined with the stunning yet subtle images are quotes from people on the spectrum.
Since this is a Kickstarter project, it will only be funded if the project reaches its funding goal of £14,700 by Thursday morning (June 5th). At this time, about 5,000 people per month visit my blog. If even half of my monthly visitors contributed just the minimum £1 pledge to this Kickstarter, then this book will become a reality.
I also want to mention that I’ve not been compensated in any way for this post (other than receiving the PDF proof so that I could talk about the book here) – I’m posting this because it’s a topic that’s close to my heart. in fact, I personally contributed to the Kickstarter to help make this book a reality (and so I can have a physical copy of the book once it’s been printed). It’s only £18 to receive a copy of the book (plus an additional £8 to ship if you’re outside of the UK). I personally chose to fund two personalized copies of the book – one for each of my boys on the spectrum.
You can read more about this wonderful project on various websites:
- Rosie Barnes Photography (which also showcases more of this photographer’s gorgeous work)
- The Huffington Post: Documentary Photographer Rosie Barnes Talks About Her New Book, ‘Understanding Stanley – Looking Through Autism’
- Photography Blogger: Understanding Stanley – Mother Uses Photography To Visualize Her Son’s Autism
- Photobook Club: Understanding Stanley
- Autism Daily Newscast: Rosie Barnes tallks about her book, ‘Understanding Stanley – Looking Through Autism’
- Lancaster Guardian: Jo Worgan’s Column
Rosie has also been asked by Ambitious About Autism to be their ‘GUEST AUTHOR’ on their stand at THE AUTISM SHOW at EXCEL on 13th/14th June!
So please, take a look at the Kickstarter – whether you’re a lover of photography, or someone who loves a person on the spectrum, or someone who’s on the spectrum yourself, or someone who wants to gain more awareness of what life is like for those on the spectrum (or all of the above!) Remember, this project will only be funded if it reaches its goal by early morning on June 5th. On a purely selfish note, I want it to be funded so I can receive my copies! But on a less selfish note, this is a topic that’s incredibly close to my heart – the more people are aware of what life looks like when you’re living with autism, the more accepted my own boys will be in our society – despite their differences that set them apart from the crowd.