Education/Inspiration
Stories of Autism
By Charles Cotugno
May 1, 2008

Background
Just before his third birthday my son, Jackson, was diagnosed with autism. It wasn’t a surprise to my wife and me; we had seen the symptoms since he was six months old so the diagnosis in many ways was welcomed. With it, we could qualify for services through our school system and insurance coverage to cover the many private therapies he would need. If there was a silver lining to all this, it was that we had to fight to get the diagnosis. Because of all the early intervention we had to date, his symptoms were barely visible. He had almost caught up in his speech progression and he had good eye contact. There was no stemming (flapping his arms when stimulated – a prevalent symptom of autism) and he was extremely social. So we have always considered ourselves very lucky with his condition. By all present indications he will live a normal life like most of the typically developing his age. A meaningful career with normal relationships seem well within his grasp should his progress remain on course.

©Charles Cotugno

The Project
Three years ago I decided to use my passion for photography to promote autism awareness and assist various foundations in their fundraising efforts. Through several email groups I asked parents if they would like to have their family members with autism involved with the project. I was very clear in my communications that I was not looking to create “pretty pictures.” I was going to create portraits that I felt said something about my subjects and communicated an element of them that was integral to their whole being. In order to be part of the project I asked each participating family to write about their feelings and thoughts about living with autism. It could be about any facet, single experience, or overall feelings. For some this was a very easy task. For others it became a soul-searching catharsis. As it has turned out these stories are the highlights of the project. They add background, context, and dimension to each of the portraits. In a few of the cases the subjects have written about themselves. It is eye opening to see how they perceive themselves, the world around them, how they fit into it, and how they ask for us to accept them as they are.

©Charles Cotugno

Challenges
These were not typical portrait sessions. The children and young adults I have photographed span the entire autism spectrum. A great many of the subjects have absolutely no speech. Many have no emotional control. Others, like Jackson, have symptoms that are barely detectable even to trained medical professionals. So it was extremely important to photograph them in environments that were familiar and comfortable. Most of these portraits were created on location; parks, in their home or in their yards. Many times they were photographed involved in the activities they liked the best or doing the things they were driven to by their affliction. The few that have been created in a traditional studio setting were done so only because the subjects needed to be in a contained space. What you don’t see in several of the portraits are the subjects’ full time aides just outside the frame.

I quickly discovered that trying to plan for these portraits beyond setting a location and time was an exercise in futility. So it was a challenge for me to let go of all the pre-planning rituals I go through with my regular clientele. Not only did I arrive at these sessions absolutely clueless as to how they would progress, I often left them thinking there was absolutely no way I got a usable shot. I’ve had kids run away from me, hit me, kick me, and hide from me. I’ve also had kids who insisted on giving me a hug after almost every click of the shutter. Some sessions have lasted ten minutes, others two hours. There has been no predictability in any aspect of this project. Seldom has one of these sessions been completed under “perfect” conditions. I consider it pure luck that only once have I had to schedule an additional session because there were no usable shots.

©Charles Cotugno

Creating and Preparing The Images for Exhibition
My first thought was to create these images using medium format film and traditional dark room methods. All images were to be black and white and approximately 24”x30” in size. But as I projected expenses it became apparent the cost would have been prohibitive, especially with next to no budget. I was not confident my Canon 10D would produce files that could be enlarged to that degree. So I purchased the Canon 5D and I couldn’t be more pleased with the images it has created. It’s light, quick, and very easy to handle. The lens I used to create most of the images was the Canon EF 70-200mm f/2.8L IS USM. Since owning this lens, it has become my absolute favorite for portraiture. It is razor sharp with beautiful short depth of field. This lens rarely leaves my camera body. Other lenses I used were the Canon EF 24-70mm f/2.8L USM and the Canon EF 16-35mm f/2.8L II USM.

To print the images I used the Epson Stylus Pro 7800 and Colorbyte’s ImagePrint R.I.P. I have found the ImagePrint profiles, especially for black and white, to be fantastic and completely neutral, not to mention how easy it is to use the software. Using their Phatte Black profiles has also been a huge advantage. Since I also produce prints on luster paper for my clients, I’ve saved a huge amount of money – and time - by not always having to swap black inks.

After experimenting with several different types of media I settled on LexJet’s Sunset Select Matte Canvas. I liked this canvas not only for the beautiful quality of prints it produced but also because I felt it would show the portraits very well under varied and unpredictable lighting conditions. Knowing that these portraits would not always be shown in galleries I needed that combination of beautiful print quality and the ability to show under almost any lighting conditions. I also need to rave about their customer service. They worked very closely with me in choosing the right media for the project and have always been able to get me supplies at a moment’s notice. (Thanks, Cody!)

©Charles Cotugno

I wanted to keep the framing very simple as not to distract from the portraits. Having used Heidi’s Place in Mill Creek, WA for several years there was no question she was the right choice to work on the project. The proprietor, Heidi Butz, has an amazing eye and chose the perfect faming for the project. To me, the best compliment a framer can get is none at all, meaning the framing neither outshines nor detracts from the artwork. Using that as criteria, her anonymity speaks volumes for her skills.

Getting the Project Seen
It’s been great to have had the opportunity to work on this project. But like anything else, unless it is seen and exposed to your intended audience, the work means very little. In order to gain visibility I began contacting local Seattle area autism foundations to see if they wanted to use it for fundraising activities. Two foundations, Families for Effective Autism Treatment (F.E.A.T.) and The Autism Spectrum Treatment and Research Center (ASTAR) have taken the project under their wings and used it for both fundraising and awareness campaigns. These events have included everything from auctions to exhibits in local museums, hospitals, and internationally acclaimed wineries. These exhibits have not only gained exposure for the project but, more importantly, have directed families who were in need to services and resources they were previously unaware of. I sent press releases to all the local media outlets and these have led to articles and interviews in newspapers as well as several television appearances featuring the project. In addition there have been speaking engagements for the general public and to groups of pediatric neurologists and hospital administrators. The launch of the project’s website, storiesofautism.com, has also been a key factor in gaining visibility as I have received a number of inquiries about it from all over the country.

©Charles Cotugno

Dealing with the Financial Realities
To date, I have invested over $40,000.00 worth of time, materials, and marketing into Stories of Autism. There are some pretty hard numbers involved in creating a project like this that have haven’t exactly been friendly to my check book. I do receive tax breaks for this investment but those breaks don’t come near covering all my costs. So trying to just come close to breaking even is something I’m still struggling with. Some families have opted to purchase prints, which I offer to them at half my usual rates. Several doctors have purchased prints for their offices. All these funds are put right back into the project. I’ve also begun the process of attaining non-profit status. With that I can accept donations to continue the project and provide for its basic needs. Things such as cases and climate-controlled storage are essential to keep all the prints in optimal condition. At present when the portraits are not on displayed they are stored in my garage, stacked alternately with pieces of archival foam core. A display system would be extremely helpful instead of having to creatively rig different ways to show the portraits, some of which aren’t as safe as they should be. On average it takes four to six months of paperwork to attain non-profit status so getting this will be a real help in not only sustaining the project but protecting all the work.
 

©Charles Cotugno

The Future
I have several goals for Stories of Autism. I want to keep adding subjects and stories. With one out of every 150 children born diagnosed with autism, continued efforts in both awareness and fund raising are crucial if a cure is to be found. I would like to keep it in continuous exhibition for as long as possible in high exposure public areas. I’d like to plan a tour for the project so it can be used as an educational tool around the country. I’m also hoping to get the project published in book form.

©Charles Cotugno

How I’ve Changed as a Photographer
To say this project has been an amazing experience is an understatement. I have met incredible people, families, and organizations dedicating their lives to helping those with autism. As a photographer this experience has taught me to drop any preconceived notions of how I think a portrait session should proceed and just go with the moment. I’ve always put an enormous amount of pressure on myself to be overly prepared for any conceivable situation so this has been a difficult lesson to learn. Now when people ask me how I’ve been able to create these portraits I really don’t have a concrete answer for them. The best way I can put it is that I have learned to feel the moment and the only way to prepare for that is to not prepare. Sharpening my reaction time rather than anticipating has been the key to creating portraits with impact.   

©Charles Cotugno

Websites and Resources
You can view the Stories of Autism with captions from each portrait’s story at storiesofautism.com.Other resources for information and assistance for those with autism include astarcenter.org, featwa.org, and autismspeaks.org. If you would like to contact me about this project you can email me at Charlie Cotugno:cc@cotugnophoto.com.  



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