Autism, through Mom's eyes

Thu, 2008-05-29 09:42 -- univcomm
May 29, 2008

Kathleen Dugan stood with her arms folded, each hand clutching the opposite elbow, as if she were looking for something to hold onto and found only herself.

Her 11-year-old twins, who were diagnosed with autism eight years ago, had been suspended from school a few days earlier.

Hannah, annoyed that vocabulary study was going to interrupt her reading, threw a dry erase board, which accidentally struck another child. Ed threw a chair when two kids he'd been working with wanted to put a label at the top of a map instead of the bottom.

Now, Dugan's pair of fifth-graders lurched up and down the hallway at the Indianapolis Art Center. Hannah, wearing pink Crocs, brown cords, and a lilac T-shirt and cardigan, was blinking excessively. Ed, in a blue polo shirt, jeans and Nikes, was putting his hands up to his face. Both bit their bottom lips and stared at the floor as often as they looked up at their own portraits on the wall.

Dugan, a 47-year-old associate professor of art at Anderson University, stood still, finally, after rushing to arrive for the reception for her exhibition, "Facing Autism."

To Dugan, it feels as if she's always running late, always struggling to keep it together.

A DVD of an earlier interview played in the background, where the artist described her work, attesting to her children's battle against the fastest-growing disability in the country, the words "problem" and "so hard" echoing through the gallery.

"You have these stretches where they're functioning pretty well. You think maybe we can do this," Dugan said. "But then you hit a bad stretch, and it rears itself up, and they tantrum—you've never heard such screaming—and you think, 'How am I going to cope with this?' "

Twenty years ago—when Dustin Hoffman gave his Oscar-winning performance in "Rain Man"—autism was diagnosed nationally at a rate of roughly 1 in 2,000.

Today, the rate is 1 in 150.

Better recognition, shifting diagnostic rules and expansion of the autism spectrum itself are part of the growth, but there is also an alarming increase in incidence, and the medical system is struggling to keep up.

When Hannah and Ed were diagnosed in 2000, all doctors and educators could tell Dugan was to go to Riley Hospital for Children, even though the wait for a first appointment could last 12 months. Now, the wait is roughly four months, at what is now known as the Christian Sarkine Autism Treatment Center, an outpatient center that started as a much smaller facility in 1997.

"It was two people," said Dr. David Posey, chief of the clinic. "Now, we have a staff of 21. But we could use more providers."

Dugan soon found she would not only have to educate herself about autism, but educate people in the education field, as well.

"The challenge with children with autism is that there's never one way of doing things," said Dr. Cathy Pratt, director of the Indiana Resource Center for Autism. "What works with one child may not be what the next child needs."

And the public still has a poor sense of what autism means.

Art is Dugan's way of combating this ignorance. Using blunt brush strokes in bold colors, she portrays the world according to children with autism—a world that is frightening and nonsensical—showing the difficulties they face and the dignity they possess.

"If you're a parent of a child on the spectrum, you become an activist by default," said Dugan's husband, Mark Tourney. "Most of what has been done has been done by parents."

Dugan said that what she's done is to paint the beauty of suffering.

But the pain isn't on the canvas. The kids there are happy. Perhaps uncomfortable, or bewildered, but not in pain.

The suffering is in the artist.

Things used to be easier.

In the late '70s and early '80s, Dugan was a young Hoosier in Bloomington, caught up in the modern art scene, graduating from Indiana University with a BA and BFA, then heading to New York for a summer art program at Queens College. Before long, she was on her way to Yale for an intense MFA program.

She eventually returned with her husband to Indiana, where she received grants and awards throughout the region. She worked at Marian College and Franklin College and took a role in the art department at Anderson University in 1992.

But an art career is hard enough to pursue, said Tourney, let alone with twins who have autism.

Dugan poured her frustration into her art, and that was possible only after a Lilly Scholars Grant she received through the university. The grant allowed her to spend the past three years painting and putting together a symposium, featuring Posey, Pratt and Susan Pieples, president of the Autism Society of Indiana. It was held at the arts center in April, Autism Awareness Month, before an audience of about 80, including parents and professionals. Dugan donated her honorarium to cover the food.

"My art provides me with the respite I need when I have no control," said Dugan, "and my faith helps me to understand that the control I seek is not mine to orchestrate."

Dugan accepts that Ed can figure out the surface area of a cylinder but can't make regular eye contact; that Hannah can speed-read and comprehend books at a 12th-grade level but can barely keep up with a conversation among her peers.

"I started to come to the realization that it's a journey," said Dugan, as Ed lay down on a bench and Hannah snuggled into her mother's side. "It's not going to be fixed. It's long-term."

It's bittersweet, too.

Dugan recently had to separate Ed and Hannah. They were bickering in the yard. Ed was pretending to drill for oil. Hannah was chastising him for contributing to global warming. Such scenes are difficult to deal with even as they are a joy.

Even the suspensions from school wrought some tenderness.

Ed, as they were driving from school, sensed his mother's unhappiness and said, "Mom, I'm really sorry. I know I'm messing up your day." Hannah made her own gesture, giving Dugan her Mother's Day present—a scented candle made in an after-school program—early.

"They do have empathy," said Dugan, "for those they love."

And that can be seen in the paintings.

Dugan requires you to deal directly with the subjects, and the subject at hand.

Ed averts his gaze, yes. Hannah, too, looks down and away.

But they do that when they're happy.

—Konrad Marshall is a reporter for the Indianapolis Star. Story republished with permission.

Anderson University is a private Christian university of 2,700 undergraduate and graduate students in central Indiana. Anderson continues to be recognized as a top Christian college: in 2008, U.S. News and World Report ranked Anderson University among the best colleges and universities in the Midwest for the fourth consecutive year. Established in 1917 by the Church of God, Anderson University offers more than 65 undergraduate majors and graduate programs in business, education, music, nursing and theology.