By Lisa Singleton-Rickman
Staff Writer
July 14, 2002

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River Zurinsky claps with student teacher Tia Crenshaw after reaching a goal during a lesson at Forest Hills Elementary School in Florence recently. Zurinsky, who is autistic, is working this summer to retain the knowledge he learned last year at school.  Photo by TimesDaily Photo Editor Matt McKean

First in a two-part series

Suzanne Zurinsky could feel her heart beating as she awaited her son's diagnosis in his psychologist's office. 

Quickly scanning the office upon entering, she noticed a sandbox. Moments later, that would become instrumental in River's diagnosis.

Dr. Rebecca Dossett chatted briefly with Zurinsky and her husband, Nathanael. Then River, who had been playing in another room with the doctor's associate, came into the office. Without a glance toward his parents or the unfamiliar doctor, he headed straight for the sandbox.

Moments later, the doctor said, "River has autism." The dreaded words hung heavy in the air. "It was like a punch in the stomach," Zurinsky said. "I looked at her and said, 'Are you sure?' "

Dossett was. She had tested River extensively, even before the clincher. When River entered the room, he didn't have the normal reaction to a stranger most 2-year-olds would have. In fact, there was no reaction at all.

The doctor told the Zurinskys that to River, she was nothing more than another stick of furniture in the room. His goal was to get to the sandbox, which is characteristic of autistic children. External influences sometimes aren't influences at all.

Despite her gut-wrenching reaction, Zurinsky said the diagnosis wasn't a surprise. She had suspected it from his infancy. Truth is, she felt some degree of relief that her instincts as a mother were legitimized so the people who kept saying, "He'll come around," could see.

Officials throughout the area say the number of children like River is on the rise across the nation. And no one seems to know why.

Special education coordinators admit their programs aren't properly funded to meet the growing demand. With limited resources, they're struggling to provide the best services possible to children from age 3 with special needs. It's a daunting task at times. During state proration budget cuts, which have been the case the past two years, it's particularly frustrating.

"There's just never enough money to do everything we need to do," said Lisa Highfield, special education coordinator for Lauderdale County schools. "We know there's a need for additional training in the area of autism, and we know we have to implement individual plans for these kids because no two children are alike."

The Alabama Department of Education has sponsored an Autism Academy, a five-year process in which special education personnel receive valuable information on the disorder, including proven intervention and teaching strategies. However, that program was suspended because of a lack of funding. Educators are hanging their hopes on President Bush's new No Child Left Behind Act, which includes additional federal funding for special education programs. Still, no one knows how much money Alabama will receive or when it will be awarded to meet the needs of public schoolchildren.

Autism is a brain function disorder that appears early in life, most believe before age 3. Children with autism have problems with social interaction, communication, imagination and behavior. They often have a narrow and repetitive pattern of behaviors, but the similarities end there.

Some experts believe that up to 80 percent of autism cases are genetic. Another inexplicable characteristic of the disorder is that it overwhelmingly affects boys.

Autism is one of a number of disorders that doctors characterize as "pervasive developmental disorders." It is also characterized as a spectrum disorder. In other words, the characteristics of autism present themselves in a wide variety of ways, from mild to severe.

Although autism is defined by certain behaviors, children and adults can exhibit combinations of the behaviors in varying degrees of severity.

Two children, both with the same diagnosis, can act markedly different from one another and have varying skill levels.

Since diagnosis is behavior-based and imprecise, many pediatricians and specialists shy away from labeling a high-functioning child with behaviors that seem in line with the disorder as autistic right away.

Parents may hear different terms used to describe children within the spectrum. Terms like "pervasive developmental disorder," "autistic-like," "autistic tendencies," "autism-spectrum disorder" and "high-functioning autism" are commonly used to initially diagnose a child.

In the end, it doesn't matter whether the child is diagnosed as strictly autistic or at some other level along the spectrum. All children with these kinds of developmental disorders learn and improve with appropriate educational and therapeutic treatments.

Autism is difficult to treat because the cause is unknown. With its increasing prevalence - some doctors are calling it an epidemic - more attention has turned to research.

Studies have shown the disorder can run in families. In seeking more research funding, the Autism Society of America has testified before Congress that the disorder affects as many as 1.5 million people today and is rising at an annual rate of 10 percent to 17 percent.

Add to that the recognition eight years ago of Asperger's and Rett's syndromes as forms of autism, and the numbers begin to climb even more.

Time magazine reported that the explosion of autism cases in the past decade is because, in part, of a broader definition of what autism is. There are various levels of autism, from mild cases of high functioning people to the most severe cases of those with no verbal communication ability and severe mental retardation.

As many theories as there are about what autism is and what causes it, there are twice as many ideas about how to treat and teach people with it.

Web site debates rage on about special diets, strict behavior modification programs, vitamins, programs and other treatments that some specialists claim can cure autism.

However, most medical experts agree that there is no cure for the disorder - only treatments that can lessen the behaviors associated with it.

They say each child responds differently to each treatment. What works for one child rarely is a perfect fit for the next. The important thing is finding out what works for each child and doing it as early in his development as possible.

Zurinsky's conflicting emotions about her son's diagnosis are common among parents of autistic children, said Dossett, an educational psychologist who operates the Dossett Clinic for People with Autism in Birmingham. She has been studying the disorder for 30 years.

During that time, there have been many changes in the treatment of people with autism. One technique that has been proven to work is visual teaching.

"We teach in a very visual way, a very scheduled way," Dossett said. "We use pictures and write everything down for these children. We've learned that the more detail we can provide these individuals, the better they understand."

There's much debate nationally over the age when a child can be accurately diagnosed.

Dossett said a key indicator of autism lies in the state of the child's reflexes and responses to visual and auditory stimulation. It's a matter of those early reflexes just not working properly.

"We can make a diagnosis very accurately early on," she said. "The sooner, the better, because we can begin intervention even sooner."

That's exactly what the Zurinskys did.

At 31/2, River already has a year of intervention services under his belt - some from the Florence school system and some from the Cerebral Palsy Center in Sheffield, which serves preschool children with developmental disabilities. The center works hand-in-hand with every school system in northwest Alabama. In addition, he receives private therapy.

The myth that educators say must be dispelled is that all autistic children are like actor Dustin Hoffman's character in the movie "Rain Man," who could guess the number of toothpicks spilled from a bottle with a quick glance.

Hoffman's character was based on a man who was an autistic savant, meaning he was highly advanced in one area of his development but delayed in others. Most autistic people can't compute ultra-complex mathematical equations in seconds.

However, some people with the disorder can do amazing things.

For example, there is an autistic third-grader in Lauderdale who can flawlessly play the most complicated classical music arrangements after hearing them only once.

The same child also has memorized inaugural speeches of famous presidents, right down to the last preposition.

Then there's the child in Ann Anderson's autistic class in Russellville who can tell the day of the week on which any date on the calendar falls.

Anderson doesn't try to explain it. She just smiles when it happens, and, at this point, doesn't second-guess the student because, "He's always right."

George Harper, special education coordinator for Russellville schools, said he's nothing short of fascinated by those students.

"Our numbers are increasing leaps and bounds," said Harper, whose system has gone from having no autistic children a decade ago to seven last school year. "Part of it is that we're getting better at identifying it, but I also believe there are more cases now. Throw in the environmental factors and chromosome damage, and there you have it. No concrete answers."

Taking his theories a step further, Harper said the only common link among autistic people is that there is no common link.

He knows the disorder is heartbreaking for parents. It hurts him, too.

"It's so hard to watch the parents," he said. "Sometimes, they're in real denial, and other times, they're just absolutely devastated."

The autistic class in his school system is in its seventh year and is clearly "one of the best things we've done."

There's no disputing the need for more intensified programs in local school districts.

Of the 4,215 students in the Florence school district, 23 have been diagnosed with autism. Lauderdale schools serve eight diagnosed autistic students in additional to others without a strict diagnosis, but who have developmental disorders in the same spectrum. Colbert County and Muscle Shoals schools also each serve eight students.

Like others in her profession, Highfield believes the number is actually much higher, since some children don't have an official autism diagnosis.

"It used to be that 1 in 10,000 births were autistic children," she said. "Now, the incidence is 1 in 120 births. Tell me something's not going on."

To help compensate for the need, Highfield said her school district will begin a separate class for autistic children this fall. A specialist will lead the program and work with parents at home to help organize their children's schedules.

At West Elementary School, Anderson has dedicated her life to working with autistic children. In 20 years of teaching, she has never been without at least one autistic child in her classroom.

In recent years, she has averaged six to eight children and has aides to assist. Sometimes, given the range of severity among the children, each student has his or her own aide. But it has to be that way.

Anderson's day begins promptly when the children enter the room. Bus riders use one door, car drop-offs another. Each has a picture schedule posted right by the door. The kids go directly to the schedule, which directs them to breakfast.

The day progresses from there, very regimented with a diversity of activities.

Between every activity, even if it's a restroom break, the children go to look at the laminated picture schedule to help them make transitions smoothly.

Anderson relies heavily on communication by picture symbols. Everything the children will do in a day has a picture.

Her classroom is not as colorful and busy-looking as a regular classroom. In fact, by most kids' standards, it's a little boring.

"I can't hang anything from the ceiling because my children will go nuts," she said. "I can do one thing differently, some insignificant little thing, and spend the rest of the day calming them down."

Relying heavily on picture symbols, Anderson said communication is the imperative, not language. What she has found is that the pictures enhance language ability, and even children who were nonverbal pick up words.

Alison Isbell, director of the Cerebral Palsy Center, uses an analogy a parent once shared with her.

"It's like planning a trip to Japan," she said. "You buy your ticket to Japan and pack for Japan and board the plane headed there. Then the plane lands in Ethiopia. Not that Ethiopia is a bad place, it's just much different that what you'd planned for."

In her seven years as director, Isbell has seen an increase in the number of children coming to her with autism, and she recognizes the challenges it has presented to the staff.

There has been lots of training.

And, as with other disorders, "It's something we constantly have to stay on top of because intervention procedures change."

Four of the center's 48 children are autistic. They have served as many as 10 at once. All 13 staff members are trained to deal with the disorder.

Zurinsky said River's experience at the center has been positive. She also knows what she does at home to enhance his learning is crucial.

River not only has language ability, she said his speech has exploded. That brings about another challenge for the Zurinskys: They must run with it and tap into his mind.

As an art appreciation instructor at the University of North Alabama, Zurinsky has always focused on how to most effectively teach her students. Her doctoral work was on educational theories and the study of various teaching and learning styles.

It almost seems like Zurinsky was unknowingly prophetic in choosing that topic, because River has provided the greatest teaching assignment of her life.

She learned techniques at an autism seminar in Fort Lauderdale that changed much about her teaching methods. Autism specialist Dr. Vincent Carbone, who led the three-day seminar, taught techniques that Zurinsky has applied religiously since returning.

Carbone believes autistic children shouldn't be forced to conform to a parent's desired behavior. Instead, he encourages parents to quietly and gently engage children in activities by piquing their interest. Positive reinforcement is key. So far, it's working for River.

River spends two days a week in a summer program for autistic children at Forest Hills Elementary School in Florence aimed at preventing regression. Zurinsky praises it as an exceptional program.

Still, she's concerned that there's a statewide lack of teacher understanding about autism. However, Zurinsky said teachers aren't to blame.

"Training is being cut in areas where it's desperately needed," she said. "We've got to get our priorities straight in this state or we're going to lose this whole generation of children, many of whom have great potential."

Highfield added that school systems must continue seeking funds for autism training and programs.

"I'm not giving up, no ma'am," she said. "We're starting a support group this summer for parents of autistic children, and we'll go from there. Schools have a big job ahead. We need more training, not just more money. We're going to stay on top of this. The children deserve it, and their futures depend on it."

Abby Felder, a specialist in autism at the Department of Education, is well aware of school systems' needs. When the Autism Academy came to an end, she began seeking grants to bring other training around the state.

"The autism society has been great to deal with, and we now have grants for five years to serve children in various areas of development," Felder said. "We're working hard to enable school districts to provide well-rounded programs for both the parent and student element.

"It's challenging, but we're getting there. I have high hopes for Alabama's children."

Lisa Singleton-Rickman can be reached at 740-5735 or lisa.singleton-rickman@timesdaily.com.