(Health/Education feature) Living, learning with autism

Sunday January 23 2005

James Fuller Daily Herald Staff Writer

Jordan Brunett showed all the qualities of an extraordinary mind at a young age.

At 3, he could name the U.S. presidents in chronological order. He knew all the planets in the solar system. He could count in Spanish.

Yet his mother, Rhonda, sensed there was something not quite right about her son. She had trouble getting his attention. He wouldn't play with other kids. He would sit with a pile of blocks in front of him, swinging each one from ear to ear for hours.

The Carol Stream mom shed many tears of frustration before discovering the cause of her son's behavior. The diagnosis came at a preschool screening just before his third birthday.

Jordan, now 12, is autistic.

After getting over the initial bewilderment, Brunett's next step was figuring out how her son could best be educated.

On a larger level, it's the same struggle schools in Illinois are facing as they see the number of autistic students grow yearly.

According to the state board of education, there are about 7,000 autistic children in Illinois schools, up from 2,305 seven years ago. The same trend can be seen in local school systems.

In Palatine Township Elementary District 15, for instance, the autistic population has doubled in the last five years to about 80 students. Lombard Elementary District 44 has gone from seven to 16 autistic children in a similar time. In Arlington Heights Elementary District 25, growing numbers of autistic children prompted the administration to look at adding a class just for them to augment intensive services already provided.

While experts and lay people alike debate why, educators are working to secure the training and money to meet the demand and the special needs of autistic children.

Jordan Brunett was lucky. His early diagnosis began a process that resulted in an individualized learning plan.

"The school knew what to do," Rhonda Brunett said. "They had that knowledge, but I didn't know anything. So I started to educate myself."

One of the challenges of educating autistic children is that each is different. The syndrome is a lifelong disability that can involve trouble with learning abstract concepts, communication problems, emotional meltdowns when a routine is changed and social isolation.

At Jordan's school, Elsie Johnson in Hanover Park, special education teacher Angelina Summers first came upon autism by chance. While studying to be a mainstream teacher, she had no training in autism until her first student-teaching job.

"I saw a kid who clearly wasn't like the others," she said. "I asked the teacher, and she said, 'Oh, that's autism.' I was like, 'What is that?'"

Now Summers has a class of nine early childhood special-needs students, some of whom are autistic. The current growth of autism has her preparing for up to three more students next year.

Summers' classroom is decorated in brightly colored ABCs and 1-2-3s. Without the students, it's indistinguishable from a "regular" classroom. Yet the class instruction is noticeably different.

Summers doesn't stand in front of the room lecturing to students in desks. Mostly, she sits at a little table with one student at a time while her five aides work with the other kids.

Autistic children can be over-stimulated by large groups and are sometimes uncomfortable sitting near others. For some, a light touch can feel like a slap. A hug can be smothering. A slight flicker of a light can entrance.
In Summers' class, each activity has a picture associated with it to help guide students through the day. Visual aids are nearly a necessity.

"If I were to go a whole day with some kids and not use a single picture, it would be a rough day for some of them," she said.

Meltdown Control

Some people unfamiliar with autism may associate the disorder only with what's known as the meltdown. That might occur when an autistic child is pushed too hard too fast, and the mind becomes jumbled.

"Everyone has warning signs," Summers said. "If you choose to ignore those little sparks, you're going to have a big fire on your hands. If you keep pushing, eventually you'll see the kid with their head on the table not doing anything."

It's not because autistic students are disobedient. Their minds just don't work the same way as other children's.
Despite the challenges, it's not uncommon for autistic children to be placed in regular classes, often with aides.
Others can't function in regular classes. For instance, about 40 percent of children with autism don't speak, according to the Centers for Disease Control and Prevention.

"These are smart kids," Summers said. "I treat them like normal kids because, in my mind, they are. You can't completely define a child by their difficult moments."

Just defining a child as autistic can be a struggle. Meeting the needs of high-functioning autistic children can be particularly tricky because their learning is very similar to "regular" students, but their social behaviors are different.

Teachers often sit on the front line in spotting such disorders, since autism can easily be confused with behavior problems. Teachers who aren't trained to spot the disorder can make the same mistake.

Wendy Williams remembers teachers having little patience when her son started school.

"I actually had a teacher come up to me and say he was annoying, and if I didn't do anything ... he was never going to amount to anything," the Wheaton mother said.

Like Jordan, Williams' son displayed talents early, walking at 9 1/2 months, reading on his own at 3. His thirst for knowledge was such that she had him in four different preschool programs to keep him busy.

"I thought the kid was a genius," Williams said.

But odd behavior was there, too. He was afraid to walk barefoot on grass. Loud noises caused extreme trauma. He wouldn't play with other kids.

At 6, he was misdiagnosed with Attention Deficit Disorder and placed on medication, to which he had a severe reaction. Eventually, tests confirmed what Williams' own research led her to believe: Her son, now 9, had Asperger's syndrome, a high-functioning form of autism.

"I always thought something was missing because everything the doctors were doing was not working," she said.

Suburban educators are working to prevent repeats of Williams' story while also cringing about past students written off or misdiagnosed.

Disorder old and new

Autism was first described in the 1940s, according to the Autism Society of America. But many educators are only becoming familiar with it as autistic students come into their schools in larger numbers.

"At least now we're recognizing it as a disability," said Naperville Unit District 203's Kitty Murphy, assistant superintendent for special education. "Hindsight is 20/20, but we try not to look back. We try to look forward."

Looking forward is going to look a lot like the recent past, she said. The district doesn't have a full count, but Murphy said it's had about 40 more autistic kids enroll every year since the 2000-01 school year.

That isn't uncommon.

Elgin Area School District U-46's autism numbers have grown to 140 children, large enough for the district to host a weeklong summer training session for staff to have hands-on training with autistic kids. The training is so popular, U-46 plans to extend it to two weeks next summer.

Likewise, District 203 has reorganized staff to provide a regular, in-class immersion for autistic children in the morning. In the afternoon, they go to another building for social skills and language training. The district even created a parent support group because so many parents wanted answers and information about the condition.

Yet despite such advancements, Illinois Autism Project Director Kathy Gould contends that many school systems in the state are still not fully prepared for autistic students.

"I get phone calls every day from parents who say, 'My child is going to school every day, and no one is trained to help him,'" she said. "Teachers and administrators will call and say, 'OK, we've got two kids with autism coming in, and we don't know what to do.' "

Gould's group, based in La Grange, provides intensive training and assistance to schools trying to educate students with autism and other developmental disorders.

To date, only about 11 percent of Illinois districts have received the training, and that puts Illinois behind the curve, Gould said.

Many states have provided autism training for 30 years. Illinois has offered it for only seven because state funding for disabled kids is low and the special education community hasn't created a lobbying effort powerful enough to change that, she said.

In East Maine Elementary District 63 in Des Plaines, there are 24 autistic students - a 50-percent increase in two years. Special Education Director Brad Voehringer said the district is finding the staff and materials to meet the growing need, but money is scarce.

"Special education has never been fully funded," he said. "We have a lot of students with significant needs, and to provide for them we have to have the resources to do that. We're doing it now, but we have to take money out of other programs' pockets to put it into special education."

Beyond that, Gould contends that local universities typically don't offer classes to specifically train future teachers to deal with autistic kids.

"They're just not prepared for the kids," she said. "It's a shame that it's not required training because it's essentially the fastest-growing disability in Illinois."

But the rules of the game are changing. Certification of special education teachers has been revamped since a lawsuit against the Chicago Public Schools over the segregation of disabled students. Before the lawsuit, special ed teachers were certified in a specific area to work with a specific disability. Now, they must have a general certification that enables them to work with all types of disabilities, said Illinois State University Assistant Professor Julia Stoner.

ISU reworked its entire special education curriculum to meet the changes, and the first graduates with the new certification are just now entering the work force. Another 700 current students will follow. Yet, even in the current curriculum, there's no course that focuses purely on autism unless a student goes to graduate school. Mainstream classroom teachers have one special ed introductory course that touches on autism.

But ISU is responding in other ways to reach teachers already out in the field. ISU runs a center that focuses on developing technology to help special education students. It has also opened the Autism Spectrum Institute, which is working with the Illinois Autism Project to provide materials, a reference library and training in autism.

"I don't care what area of teaching you're in, you have to try to keep yourself up-to-date," Stoner said. "We're trying to provide those opportunities because there is definitely a need out there."

The Illinois State Board of Education is tapping into that need with a pilot program it's kicking off this month.
The program, run with the Autism Training Center in West Virginia, places a consultant with a family who has an autistic child and with the child's school. Through training, assessment and consultation, a long-term learning plan is developed for the student.

Fewer than 50 participants - far beneath the demand - will be selected for the pilot program, said state board spokeswoman Becky Watts. When the state board announced the program, "the phones just went crazy," Watts said. "It wasn't just schools, but parents saying, 'I want my child to be part of this pilot project.' It speaks to me of the need that is out there in the state."

The state board is currently setting its funding priorities to present to lawmakers. Watts said the increase in autism will be a consideration.

No easy answer why

Perhaps the only thing harder to find than funding is an explanation for why a child has autism or why the numbers are growing.

"If you read the research, it's all over the place," said District 15's Deb Zech, director of student services. "There's speculation on everything from environmental causes to genetics and just issues with the brain. And, perhaps we're just better at identifying the disorder."

In Jordan Brunett's case, his mother's growing understanding of autism has helped her get over thoughts like, "God, what are you doing to me?" Instead, her concern is, "What can I do for Jordan?"

That attitude has helped him grow into an all-star in Carol Stream's youth baseball program. He's honed his bowling skills enough to earn him a spot on a travel team. And, he has the friends his mother always dreamed he'd have.

"Kids like to be around him," Rhonda Brunett said. "They respect him, but that didn't come easy. That was with perseverance. Everything turned out right for him."