hen little Hayley was 18 months old, her mother, Pam Allen of Gainesville, realized there was something different about her daughter.

Hayley didn't respond to her own name, but she was mesmerized by the light moving across the TV screen in the opening sequence of "The Guiding Light."

She wasn't trying to speak. She didn't recognize the telephone or the doorbell. A loud noise wouldn't startle her.

Tests showed that Hayley was not deaf, but something the audiologist said struck Allen on the ride home.

"The audiologist said, 'Well, she could be autistic . . .', but then he brushed it off," Allen recalled.

"In my time in nursing school, I had only seen one autistic child, but I just knew," she said. "I cried the rest of the way home. It was horrible, absolutely overwhelming."

Hayley, now 12, was autistic.
Autism is a complex developmental disorder that appears in the first three years of a child's life, though it is sometimes diagnosed much later. The result of a neurological disorder, it affects the brain's normal development of social and communication skills.

It affects two to five out of every 10,000 children, and is four times more prevalent in boys than girls.

Autism is not a learning disorder, according to Mark H. Lewis, a psychiatry researcher in the University of Florida's College of Medicine, but the defining features make learning much more difficult. And because symptoms occur with varying degrees of severity, treatment cannot be a one-size-fits-all approach.

UF's new autism program, directed by Dr. Jodi Star, will channel the efforts of researchers and physicians into a new approach designed to enrich the lives of families affected by the condition.

From a parent's standpoint, it's an approach that is long overdue, said Allen. A clinical coordinator in the department of psychiatry, Allen said the resources here are part of the reason she moved to Gainesville from Tallahassee.

"As a parent, it is truly hard to put it all together," she said. "This way, you have more than one mind working on options. Often techniques you might use with the most challenging child wouldn't work with an autistic child. You have to be willing to be down on the floor, drop all your the facades and do whatever works."

Allen describes life with a 2-year-old Hayley: "She would wander outdoors, hide in a closet, wouldn't respond to her name. I put bells on her shoes to keep track of where she was in the house. Here was this 2-year-old who could do everything any other 2-year-old could do, but couldn't talk. She'd have a fit about clothes, because she has so many sensory problems."

Hayley developed the self-injurious behavior that is one of the alarming characteristics of autism, biting herself and repeatedly banging her head in nursery school.

Those with autism may perform repeated body movements, show unusual attachments to objects or have unusual distress when routines are changed.

They often sleep only two or three hours a night. Some may also experience sensitivities in the senses of sight, hearing, touch, smell or taste.

"These children don't know fear at all, and you go to extraordinary measures to keep your child safe if you should fall asleep," Allen said. "The term 'setting limits' has a different meaning when you have an autistic child."

The UF autism team aims to provide families that have an autistic child with the services they need.

The team - which includes child psychiatrists, behavioral analysts, speech and language pathologists, nurses, health psychologists, and pediatricians - will soon be using a comprehensive initial assessment questionnaire that will enable parents to easily provide patient information before their first appointment.

"This allows the health-care team to get a sense of a child's needs, problems and past assessments so we don't start from scratch," Star said. The child may need genetic assessment, psychological testing, speech therapy and medical management.

"We have a medical director in Dr. Star who is both a board-certified pediatrician and a child psychiatrist," said Dr. Regina Bussing, chief of child and adolescent psychiatry in the College of Medicine.

"That's an important combination because the needs of children with autism are unique. These children do not communicate or present symptoms in a conventional way. Sometimes pediatricians become stymied and need to consult with a child psychiatrist," she said.

Also at UF, the Center for Autism and Related Disabilities, with offices in Gainesville and Jacksonville, works with families, caregivers and professionals to help those with autism reach their maximum potential.

UF will host an autism conference from noon to 5 p.m. today at the McKnight Brain Institute, and Dr. Isabelle Rapin will give a public lecture at 2:30 on contemporary approaches to autism treatment.

Allen said the most frustrating thing for her is the growing number of children who are being identified as autistic.

"By the time a kid is diagnosed, the family is in crisis," she explained, noting that is why programs like those at UF are so important to help parents cope with the emotional and financial strain.

"When your child is really small, you see their life choices grow every year. But for an autistic child, it shuts down. I just wish there was more out there for those of us whose kids are continuing to move on through their life span," she said.

Diane Chun can be reached at 374-5041 or chund@gvillesun. com.