Easter Seals Announces Pioneering Autism Effort
By Peter Gorner for the Chicago Tribune
With the stated dream of someday curing autism–a disease being diagnosed in rapidly increasing numbers–Easter Seals Metropolitan Chicago on Thursday announced plans to build a $24 million school and research center on 3.4 acres of land donated by the city.
Organizers say the 86,000-square-foot facility at Damen Avenue and 13th Street will be the first of its kind in the U.S. to integrate education, academic research, early intervention programs and training to prepare patients for work and independent living.
Officials see the Therapeutic School and Center for Autism Research as a way to foster interaction between scientists who work on autism and service providers who can apply their findings to clinical practice and education. The facility will be run in collaboration with researchers at the College of Medicine at the University of Illinois at Chicago and Rush University Medical Center.
“No one has attempted to do something of this scale before. But it’s timely, it’s needed, and it’s altogether unique,” said Stephen W. Porges, director of the Brain-Body Center at UIC and a leading researcher into the causes and treatment of autism.
Autism is an incurable, lifelong developmental disability affecting social interactions. Children and adults with the disease find it difficult or impossible to relate to other people in a meaningful way. They may show repetitive patterns of behavior or body movements and often have some degree of mental retardation.
The disease has been said to affect an estimated 1.5 million Americans, and diagnoses are increasing at a rate of 10 percent to 17 percent a year, though the numbers are a source of controversy. Autism occurs in one in every 166 births and is four times more common in boys than in girls.
The exact cause of the condition remains a mystery, and there is no cure. Many scientists think autism results from a complex interaction between genetic predisposition and environmental factors.
Officials outlined their plans at Easter Seals’ Therapeutic Day School, 1950 W. Roosevelt Rd., one of two Chicago-area schools where Easter Seals currently provides educational and therapeutic services to more than 150 children with autism. The other is in Tinley Park.
They hope to break ground on the project in the fall and said $5 million has been raised so far, including a $4 million state grant secured by Illinois House Speaker Michael Madigan. The Chicago City Council has approved donation of the land, valued at $3.5 million.
Nowhere else in the country will comprehensive services for children with autism be so well integrated at a single campus facility, according to Easter Seals officials.
“It’s being designed from the perspective of the child and not placing the child in a facility that’s designed for something else,” Porges said. “Their sensitivities to noise, light and the basic environment are not the same. This school takes that into account.”
In the new facility, researchers will be able to observe and evaluate individuals with autism in environments where they learn and socialize.
The school will include independent living residence facilities for adults with disabilities, including but not limited to those with autism. The residence will be filled on a first-come, first-served basis.
Other researchers said they were surprised and excited by the Easter Seals project.
“I think the need for it is extreme and has been present for some time,” said Dr. Barbara Trommer, director of the Center for Neurodevelopmental Disabilities at Evanston-Northwestern Health Care. “The fact that the need is being recognized and addressed in such a comprehensive fashion is a major step forward for the affected children and their families in Chicago.”
As part of a fundraising campaign launched Thursday, Nuccio Dargento and Rocco DeFrenza, owners of Vince’s Italian Restaurant, 4747 N. Harlem Ave. in Harwood Heights, announced a pledge of $100,000.
Dargento’s son, Enzo, has autism. When he started showing signs at age 2 1/2, his father plunged deeply into denial.
“He started acting like there was nobody there. No speech. No relating. Nothing,” Dargento said. “I went through therapy myself because I felt like I’d lost a child. I didn’t know what it was. I didn’t understand it.”
Now 7, Enzo attends a program for autistic children in Schaumburg School District 54. He has good days and bad days, but his parents feel like they’re getting their child back.
“He refers to me as Papa, rather than Daddy,” Dargento said. “That’s an Italian thing. I always called my dad Papa, so I wanted my son to call me Papa.”
The explosion in autism diagnoses is surrounded by tremendous confusion.
The number of diagnosed cases in Illinois schoolchildren rose to more than 6,000 in 2003 from 322 in 1992, according to statistics compiled by the U.S. Department of Education. During the same time period, national special education statistics show a 657 percent increase.
Those statistics are routinely used to suggest the U.S. is experiencing an epidemic of autism.
However, a new study by University of Wisconsin researcher Paul Shattuck, published in the journal Pediatrics, found that special education data are “hopelessly confounded by changing and uneven identification reporting practices among schools and states.”
Many researchers have concluded that greater awareness, improved diagnosis and increased availability of special education services all have affected the autism numbers.