AVON PARK — Seven-year-old Sydney Lanier’s eyes sparkle. She has a delightful gap-toothed smile. Left to herself, she plays happily for hours.
Sydney also has excellent manners, especially for one so young.
Ask her, “Do you want to play?” She answers politely, “No, thank you.”
That polite reply and her ability to amuse herself, however, lie at the core of a complicated dilemma.
Sydney is learning to live with autism, a complicated disorder that manifests itself across a wide spectrum.
“When you’ve met one child with autism,” says Jim Lanier, Sydney’s father, “you’ve met one child with autism.”
He’s quoting a line heard often among the families of the autistic, because no two children are affected in the same way.
Typically, autism syndrome disorders, or as Sydney prefers, ASD, impair the ability of individuals to relate and communicate with others.
Pam Lanier, Sydney’s mother, said the disorder is often associated with rigid routines and repetitive behaviors, such as always doing things in the exact same order and method, or obsessively arranging objects.
Individuals with the syndrome have trouble connecting to others, or even holding simple conversations, although they are often very bright with excellent memories. They also are very literal and concrete in their thinking.
According to the Web site www.autismspeaks.org, one in 150 individuals is diagnosed with ASD making it, “more common than pediatric cancer, diabetes, and AIDS combined.” The site goes on to say the syndrome occurs in all racial, ethnic and social groups and is four times more prevalent in boys.
No one knows yet what causes the syndrome, which means there is fierce debate on that subject.
What is known is that there is currently nothing to prevent it or cure it.
There are treatments that can help, but Pam Lanier pulled no punches. “Autism is not for the faint of heart,” she said.
“It’s not a secret to say that the divorce rate is high (among families of ASD children), especially when you don’t understand (the disorder),” added Jim Lanier.
This is partly because treatment has to be constant, integrated into school time, play time, family time and meals. Progress comes in baby steps the Laniers said, because children become deeply stressed and upset when dealing with change, disappointment, confusion or the unexpected and can only adapt so much at a time. Some children can’t bear to be touched which complicates the issue and often leaves parents feeling rejected.
Emotional meltdowns are not uncommon and always harrowing, both for the child and those standing by.
The Laniers spoke of having to deal with judgmental observers when Sydney was having difficulty in public, and getting a great deal of mean-spirited advice.
But all this doesn’t mean the situation is hopeless, or nothing can be done, the Laniers said. There are treatments that are effective, and strategies that help.
It is critical, they said, for parents to educate themselves and to get the earliest possible intervention for the child.
Of course, intervening early means facing the truth quickly — something that isn’t always easy to do.
For the Laniers, who were first-time parents, it also was difficult to know what constituted normal behavior.
“When she was very, very young we thought we were blessed because she was quiet and behaved so well,” Jim said.
It was when Sydney joined a few other toddlers in a private day-care setting (Jim is the music minister for the Union Congregational Church and Pam is a special needs teacher with the school district) that her parents discovered their daughter didn’t want to play with others or share her toys.
“At first you want to believe the good things,” Pam explained, “you grasp at reasons.” At the same time she had a gut feeling that something was wrong.
The Laniers took Sydney to a pediatrician when she was about three and then to All Children’s Hospital, coming away with the truth, feeling crushed and overwhelmed.
“Pam and I knew nothing,” said Jim.
Worse, they found it difficult to get any information. They persevered in their research, however, learning about applied behavior analysis — based on B. F. Skinner’s work in behavior modification — and speech and occupational therapy.
They were blessed, they said to be one of 15 families accepted into an experimental program run by the Celeste Foundation in Mount Dora. Unfortunately it was a granted project and has since been shut down.
The family spent a week living on the campus, Jim and Pam learning how to teach Sydney, and Sydney beginning to learn how to cope.
Many of the methods the Laniers learned work well with all children, and even adults.
For example, warning that something is about to happen and then counting down to it. Giving a choice in a situation. “Do you want to sit in the red chair or the blue chair,” when the object is to get Sydney to sit down. Providing a reward for a wanted behavior, called the “first and then” approach — “first brush your teeth and then we’ll read a book.”
The Laniers also feel blessed that Sydney is mainstreamed at school. They praise her teachers and compliment her classmates. Sydney is a difficult friend, they said, yet she has endearing qualities on which her classmates focus.
In fact, the love Jim and Pam have for their daughter radiates from them.
“Since her birth she brings joy to everyone,” Jim said. “She makes people smile.”
“She experiences the world differently,” Pam said, adding Sydney has taught them to see in a new light. “She brings things to my attention I wouldn’t have noticed, because she pays such close attention to detail and is so observant. She has an unmatchable imagination that won’t quit.”
Finding help for a child with autism is difficult everywhere. Currently occupational, speech or similar therapies are not covered by most insurance although legislation to change that is pending. Finding professionals with experience also is difficult, especially here in Highlands County.
The Laniers warn that no single treatment protocol is enough in itself, the syndrome poses a variety of problems many of which have to be addressed individually. In their experience Sydney has responded best to a highly structured setting and constant re-enforcement.
A support group for anyone with an autistic individual in their lives meets the at 6:30 p.m., first Monday of every month in the conference room at Florida Hospital, Heartland Division.