Illuminating autism
From www.vermontguardian.com
Annie O, 24 Years of a Girl’s Life with Autism
Photo exhibit, Northlight Digital Gallery Space
Tip Top Media Arts Building, White River Junction
The exhibit is free and open to the public.
It will be on display until September 5.
For more information, call 280-1888.
By Shay Totten | Vermont Guardian
posted August 12, 2005
It’s an innocent picture: A naked child sitting on a couch with a basket over her head. It’s cute, right?
Yes, it is. But, the story behind it is what makes the photograph more than simply a cute, and artful, image.
“Annie didn’t like to wear clothes, and would often amuse herself by sitting on the couch — naked — wearing a basket on her head,” said Dana O’Neill. Dana and her husband, David O’Neill, are documentary photographers and decided to put 24 years of photos and memorabilia on display as a way to put their daughter’s life with autism in perspective.
The O’Neills’ exhibit offers more than just family snapshots. They chose photos that represent meaningful stages in Annie’s life with autism. The exhibit includes photos of Annie at school, with her sister Rose and neighborhood children in the backyard, on stage as Cinderella, eating a popsicle, riding a unicycle, and working as a prep cook at Landmark College.
The hope is that their photos, along with captions and other supporting information such as a 1986 letter with Annie’s diagnosis and teachers’ journals, will help to change the public’s perception about autism and illustrate the need for increased autism services in Vermont and New Hampshire. The exhibit is being supported by local organizations, including the Children’s Hospital at Dartmouth and ARCH of the Upper Valley, a non-profit founded in 2004 by a group of parents who are aware of the tremendous needs that families have when supporting an individual who has an autism spectrum disorder.
“We’re not trying to solve the puzzle of autism with these photos,” said David. “We’re just trying to illuminate it. People are afraid of the word of ‘autism,’ and there is a lot of misunderstanding about what autism is. She was a misunderstood child and what we’re trying to show in this exhibit is that she was a typical child in the family and not some sort of strange creature.”
Dana adds: “We also wanted to give some people a sense that these kids do grow up and become adults, and I think that’s hard for some parents, and grandparents, of children with autism. I think something like this would have helped us better understand Annie when she was younger, being able to think about what she might be like when she was 24.”
For any parent with a child who has been given a diagnosis on the autism spectrum, thinking ahead is the name of the game. Parents must constantly be prepared to help their child work through a triggering event that can upset them, and work to avoid those situations.
Raising their family in Hartford, CT, the O’Neills said they knew hundreds of kids, but had never herd the word “autism.”
Autism, a complex developmental disability that typically appears during the first three years of life, knows no racial, ethnic, or social boundaries. It impacts the normal development of the brain in the areas of social interaction and communication skills, and children and adults with autism typically have difficulty communicating with others and relating to the outside world.
More than 1.5 million people in the United States today have autism or some form of pervasive developmental disorder. Its prevalence rate makes autism one of the most common developmental disabilities. Yet most of the public — including many professionals in the medical, educational, and vocational fields — are still unaware of how it affects people and how they can effectively work with individuals with autism.
“When we were told the diagnosis — early infantile autism — the doctor said, ‘You know you’re in this for the long haul,”’ said David.
“It was a relief to know the diagnosis,” added Dana. “It was a little sad, but it didn’t last too long and we knew at that point that we were going to get her some help and we felt closer to her at this point as a child. It also made us feel better because [the diagnosis meant that it] wasn’t her and wasn’t us; we became closer as a family.”
For the first seven years of Annie’s life, the O’Neills struggled to find her a home in the Hartford public schools, as well as a special program at the University of Connecticut. Nothing seemed to work.
David eventually made a trip to Boston where they found the Higashi School for Autism. The school’s founder had moved to Boston from Japan, where she had run a successful day and residential school for children and young adults with autism.
“This school was just what she needed,” recalled Dana.
“She learned to ride a unicycle and roller skate — she loves to roller skate — and the school had lots of musical instruments and lots of art,” added David.
Other than three years spent in Ohio, the O’Neills kept Annie enrolled at Higashi.
Today, Annie works as a prep cook at Landmark College in Putney, and the O’Neills are looking for a job closer to their home near White River Junction. One day, they hope to help find the supports Annie needs so she can live on her own.
As for the photos, Dana and David say they have been asked to exhibit the photos at the Dartmouth Hitchcock Hospital in Hanover, NH. And, they may put all the photos, along with additional text including teachers’ journals and doctors’ letters, into a book.
“This may be only the beginning,” Dana said.
