Daily Herald
As incidence of autism grows, suburbs stretching to meet demand
By Anna Madrzyk | Daily Herald Staff
Published: 10/4/2009 12:06 AM

About autism

Autism spectrum disorders can cause social, communication and behavioral challenges ranging from mild to severe.

Many children with "classic" autism do not speak and are cognitively delayed. But at the other end of the spectrum, some youngsters with Asperger syndrome struggle with social interaction, but are intellectually gifted.

Children do not outgrow autism, but research shows they can be helped by early intervention.

An epidemic: The autism rate is increasing about 10 percent a year. Today, at least 1 in 150 children has an autism spectrum disorder, compared to 1 in 10,000 in the 1970s.

Causes: Researchers are looking at complex links between genetics, medical problems and environmental factors, such as infections or exposures to toxins during pregnancy.

Early signs: Delayed speech; repeating words or phrases; lack of make-believe play, such as pretending to feed a doll; flapping hands, rocking or spinning, and unusual, strong reactions to changes or to sounds, smells and how things look, taste or feel.

For more information: The Autism Society of Illinois is based in Lombard, autismillinois.org. Or visit the Autism Society of America at autism-society.org.

Source: Autism Society of America, Centers for Disease Control and Prevention

No detail was overlooked in making Giant Steps' new 72,000-square-foot school in Lisle a state-of-the-art facility for children with autism.

Even the toilets are modified to flush more quietly. That's so they won't alarm children who are so sensitive to noise the hum of a fluorescent light bulb can be distracting.

The new building is designed to provide the visual cues children with autism need. Hallways are color coded and picture labels are everywhere. There's a large fitness center and a kitchen where students will learn how to prepare meals and do laundry. Overall, there's three times more space than at Giant Steps' former building in Burr Ridge with plenty of room for more students and new programs.

"It looks pretty big to me," said Zach, 14, who attends Giant Steps in the morning and Naperville Central High School in the afternoon.

Zach carried a binder with his daily schedule and a page of written cues to help him on his first day: "I will be in new classrooms and hallways." "I can have fun at my new school." "My friends and teachers will be there to help me if I need it."

Throughout the suburbs, public and private schools are stepping up their autism services to meet the growing need:

• Giant Steps' enrollment increased from 40 to 60 this year, and the new building has room for 120. A new after-school program from 3 to 6 p.m. is open to children with autism from throughout the community.

• Turning Pointe Foundation in Naperville last month won city council approval to build a school that will accept up to 36 students with autism.

• By Your Side, a new speech and language therapy center for children and young adults with autism, opens Monday, Oct. 12, in a fully furnished "house" - complete with a backyard playset - created inside an office suite in Burr Ridge. The aim is to help children learn how to interact socially in everyday situations, such as sitting around the kitchen table or playing Wii in the family room.

• Streamwood Behavioral Health Hospital recently opened its new Adolescent Acute Care Autism Program for teenagers with the disorder who are experiencing a psychiatric crisis.

• The Alexander Leigh Center for Autism in Lake in the Hills, which serves children ages 3 to 12, is planning to launch a junior high program early next year.

"One in 150 children are diagnosed with autism today, and many cannot adapt to mainstream schools," said Bridget O'Connor, the executive director of Giant Steps Illinois. In some suburban school districts, it's closer to 1 in 100, and autism advocates expect new research to confirm the higher rate.

Autism is a developmental disorder that's more common than Down syndrome, childhood diabetes and childhood cancer combined, according to Easter Seals Metropolitan Chicago.

Illinois schools reported 5,196 children ages 6 to 11 with an autism diagnosis in 2006-07 - double the number in 1999-2000. For children ages 12 to 17, the number has more than tripled: 3,660 with autism in 2006-07, compared to 997 in 1999-2000.

Within the autism community, there's much debate over how much of the increase is due to improved diagnosis and how much is an actual increase in the autism rate.

"It's definitely an increase in identifying," said Dr. Marrea Winnega, assistant professor at the University of Illinois at Chicago, and a nationally recognized autism expert. "The other part, we don't know."

Earlier this year, University of California researchers concluded that approximately half of that state's 700 percent increase in autism cases is real, not just a result of better diagnosis. "It's time to start looking for the environmental culprits responsible for the remarkable increase in the rate of autism in California," one of the researchers wrote.

The answer won't be simple or easy to find: Researchers now believe as many as 25 genes may be involved in this complex disorder.

But for those in the trenches of the epidemic, there are many more children in need of autism services now - and as they grow.

"The focus on autism has been primarily on the younger kids," said Kelly Weaver, executive director of the Alexander Leigh Center for Autism, which opened two years ago. "There's a very limited amount of resources available for junior high and high school, so we're paddling as fast as we can without changing the integrity of our program."

The McHenry County school's long-range plans include starting a high school program in about two years, followed by a vocational program and eventually assisted living.

Giant Steps just enrolled its first participant in a new life skills and vocational program for students past the age of 22 who have "aged out" of the school system. The program is expected to enroll 50 young adults by next fall. Turning Pointe Autism Foundation's proposal includes a recreation center as well as residential-care facilities for young adults with autism.

"A huge number of the residents will be employable; it's just finding the right job," said Kevin Gallaher, president of Turning Pointe's executive board.

Autism affects each child differently, but all youngsters with autism have some type of impairment in their ability to communicate and interact with other people. Some children don't speak at all - about 40 percent of the students at Giant Steps are nonverbal, while a youngster who is high-functioning might be a chatterbox who has trouble understanding social cues or the give-and-take of conversation.

Federal law requires that students must be educated in the "least restrictive" environment that meets their needs. For high-functioning students, this might mean a regular classroom with some support services. Other students might be in a special autism classroom within a public school.

"Local school districts really do a pretty good job of dealing with the kids who are high-functioning," Gallaher said.

But some children need the more intensive program and smaller setting provided by private schools that accept children with autism.

Giant Steps, for example, has 107 staff members for 60 students. Each student has an individual professional assistant who works with him all day, along with teachers and a team of six to 10 specialists, including speech, occupational and neuro-music therapists.

Tuition is $65,000, paid by local school districts, but partially reimbursed by the state according to a formula based on the district's per-pupil cost. The actual cost of educating a child at Giant Steps is higher, but private donations and fundraising make up the difference.

"It's expensive to educate a child with autism, but it needs to be done," Weaver said. "Our kids are far too bright and have too much to offer."

There's also a need to educate the community about people with autism, advocates say.

Giant Steps is a leader in training first responders from across the state on how to deal with people who have autism during a crisis. A child with autism may be afraid of the police or become agitated if he is touched. A young adult with autism who is out of control and a police officer who is not trained in how to respond is "a recipe for disaster," O'Connor said.

Families also need support. Turning Pointe plans to use a duplex on its new property as a respite house. Trained employees can take care of children for a weekend or week to give parents a break from the daily challenges of raising a child with autism.

Giant Steps plans to host movie nights in its new media room so families can enjoy watching together without worrying if their autistic child has an outburst or needs to leave.

"The new facility is really limitless in the type of programs we will be able to offer," O'Connor said.

As the autism rate continues to climb, it's likely even more programs will be needed.

"We're far short of the number of schools," Gallaher said. "Even with the expansion (of some programs), we do not come close to meeting the needs of all the kids that need help."