This is part one of a two-part story. Malibu parents talk about the discovery that their children are autistic, and the challenges of dealing with a disorder that possibly affects one in every 110 children in the United States.
By Jimy Tallal / Special to The Malibu Times
When Tiana Fazio was less than a year old, she suffered from ongoing sinus infections and appeared to be deaf.
“The X-rays showed nothing, but she was constantly sick,” her mother Teresa Fazio said.
By the time Tiana was two years old, she was barely walking and had difficulty keeping her equilibrium. There was no speech, either. An allergist finally discovered the enlarged adenoids that were causing the deafness problem, and had them surgically removed them so she could hear. The family breathed a sigh of relief believing Tiana would now go on to have a normal childhood.
However, her newfound hearing became more of a nightmare than a dream come true.
“[It seemed] she could then hear everything, amplified a thousand times,” her mother said. “She flipped out over the blender or the can opener for a year.”
They realized something else was wrong-Tiana was not progressing like she should have. It was then that a friend gave Teresa a book about autism with “a list of 10 items to look for.” They realized the truth, then had the diagnosis confirmed by professionals. Tiana’s overreaction to loud noises had indeed been one of the signs of autism.
Like most parents with autistic children, the Fazios were willing to try almost any treatment or therapy that held out hope.
“Doctors know the parents are desperate and willing to pay anything,” Teresa said.
When Tiana first started school in Malibu, special education wasn’t available yet, so Teresa would come to the classroom at the start of each new school year to teach fellow students “how to be with her.” Now 18, Tiana is currently a junior at Malibu High School. She’s verbal and has a talent for art in general and cartoons in particular. Many of her illustrations have been printed in this paper. Following high school, her mother hopes she’ll be accepted into UCLA’s Pathways Program, a two-year program that teaches independent living skills.
Autism is a highly variable, lifelong brain disorder characterized by impaired social interaction and communication, narrow interests and highly repetitive behaviors. “Back [in 1995], they thought autism affected one in ten thousand kids,” Teresa said.
Today, the number could be as high as one in every 110 children in the U.S., according to the U.S. Center for Disease Control and Prevention. The development disorder is diagnosed four times more often in boys than girls, and affects the way the brain processes information.
Among other signs, children with autism may suffer from insomnia, be resistant to any change in routine, laugh at inappropriate times, become withdrawn, be picky eaters, have temper tantrums, scream, display irrational fears; become totally preoccupied with certain toys, shows or games; avoid displays of affection or eye contact, or become attached to certain objects.
Less than 10 percent of those with autism display the kind of superior skills demonstrated by Dustin Hoffman’s character in the movie “Rainman,” but Malibu’s own Rex Lewis-Clack falls into that category. Lewis-Clack, age 14, both blind and autistic, is a pianist and musical savant who’s been featured on CBS-TV’s “60 Minutes” a record-breaking three times. He can play back any melody and add his own arrangement after hearing it just once, as well as compose and improvise music. His mother, Cathleen Lewis, wrote the book “Rex: A Mother, her Autistic Child, and the Music That Transformed Their Lives.” She accompanies Rex on piano engagements when he’s not attending special education classes at Malibu High School or music lessons.
The exact cause of autism is still unknown, although researchers uncover more of the mystery every year. The latest research indicates that several gene variants (mutations), some of which are inherited from a parent, must be present for autism to occur. These genetic variants appear to affect the inner structure of nerve synapses. Various genetic combinations result in a wide “spectrum” of autism disorders, with individuals ranging from high functioning to low functioning (no speech). Autism can occur with or without mental retardation.
According to Carolyn James of the Santa Monica-Malibu Unified School District, 14 students attending Malibu district schools are classified as autistic. Lisa Szilagyi, special education teacher at Malibu High School, explained that the law requires curriculum for all special education students, including autistic children, to be individualized. Their study plans may include occupational, behavioral and physical therapy along with regular school subjects, plus summer school. Higher functioning autistic children may be placed in general education classes rather than special ed. School budget cuts are not expected to affect special education programs, which are partly supported by federal funding.
Vaughn Dorn, the nine-year-old son of Beth and Ryan Dorn, was also diagnosed as autistic. His mother knew something was wrong before he reached the age of two.
“He was obsessing over certain things, it was hard to get his attention, and he would only watch one TV show, ‘Dora the Explorer.’ In fact, to this day, that’s the only TV show he’ll watch,” Beth Dorn said. “He ran around in circles a lot. There was no pretend play. He was not speaking. He fell 20 times a day.”
Vaughn attends Juan Cabrillo Elementary School half a day, where, Dorn said, “Each kid goes to individual rotating services. They also have adaptive physical education, music and acting.”
He then comes home to his computer and sessions with therapists. “It’s hard for him to concentrate in a classroom because it’s very noisy and he has difficulty with hearing and auditory processing,” Dorn said.
The ABA (Applied Behavioral Analysis) therapists may have to repeat things to him “thousands of times.”
Vaughn has made progress during the years and can now dress himself, imitate things and play board games.
“He loves music and will play the same [tune] a hundred times. I don’t know an autistic child who doesn’t love music,” Dorn said.
Vaughn had a real breakthrough since learning to type on the computer 18 months ago. Although mostly non-verbal, “he can spell and has visual memory for letters,” his mother said.
“A lot of times you think they’re not looking, but they’re taking everything in at once. They’re highly aware.”
The very first question he asked in his life was one he typed to her on the computer, “Do I look like Daddy?”
Dorn now believes that all autistic children should begin learning to use computers and other communication devices around the age of five. Typing on a keyboard may allow them to communicate even if they’re otherwise nonverbal.
Next week’s story will introduce Malibu resident Laureen Sills and the challenges her autistic son, who is now 16, faces as he approaches adulthood.