Family Believes One-on-One Intensive Therapy Is Pulling Their Autistic Son..."Out of A Dark Hole"
The Virginian-Pilot and The Ledger-Star, Norfolk, VA
ELIZABETH SIMPSON, STAFF WRITER
October 11, 2000
THREE-YEAR-OLD Robert LaBranche likes to sit by himself and turn the pages of a book.
Page after page he turns, turns, turns, then goes back to the beginning to go through the pages once again, over and over and over.
It is Karen Frey's job this day in September to draw him out of his corner.
"Robert, look at me," she says, lightly touching his chin and pulling his face toward hers. "Look at me. Good looking. That's very good looking. Show me the diamond, where is the diamond?"
He looks at her, and then past her, then askance at the page he was poised to flip. He points to a diamond.
"Good job, Robert! Very good pointing."
A simple task for most 3-year-olds, but a major achievement for Robert, whose days are filled with one-on-one therapy that Frey and two other speech pathology students provide for as many as 35 hours a week.
Their job is to keep Robert connected with the world, to teach him to look into their eyes, to point to objects, to talk to them, to respond to their questions, to look at the pictures on the page instead of simply turning, turning, turning.
Robert has autism, a perplexing brain disorder that short- circuits communication and social skills.
His parents, like an increasing number of families of autistic children across the country, have invested their hopes in an intensive - and expensive - therapy called Applied Behavioral Analysis.
The highly structured treatment teaches young autistic children by breaking skills into small steps. Successes are rewarded with praise and hugs; inappropriate behavior gets ignored.
Many families of autistic children try an array of unconventional remedies - from special diets to supplements to enzymes like Secretin. What sets ABA apart is some scientific research showing that it works.
In one study, for instance, preschool children who had 40 hours of the therapy a week for several years were much more likely to enter a regular classroom by first grade than those who didn't.
But the success comes at a steep price: The highly structured, one- on-one coaching costs $20,000 to $40,000 a year. Insurance companies and public education systems alike have balked at footing the bill, sparking protests from parents across the country.
Some families, like Robert's parents, Catherine and Richard LaBranche, are creating their own programs. The LaBranches hired a consultant from Northern Virginia to train three speech pathology students to give Robert 35 hours of therapy a week. Catherine LaBranche estimates the therapy costs her family $20,000 a year.
"The mainstream thinking is to wait for more studies," Catherine LaBranche said. "But time is of the essence. We can't take a wait- and-see attitude."
The treatment she says, is "pulling him out of a dark hole," and if they wait too long, their window of opportunity will close.
It's 9:30 on a Monday in early September. Frey and Robert are in a brightly lit room on the second floor of the LaBranches' Virginia Beach home.
"Sit in chair," Frey tells Robert, a brown-haired boy who's full of energy.
He sits in a chair before a blue table. "Thank you very much, good listening," Frey says. "Hands in lap."
He puts them in his lap.
"Robert, look at me."
First he looks past her, then at her face, then past her again. "That was some good looking," she says.
She lays down six cards with different pictures on them.
"Ready, point to clock."
He looks at the cards, but doesn't point to anything. After a few seconds, she picks up the cards and puts them down again.
"Point to clock, Robert."
This time he does.
"Good job, that was such a good job." She gives him a hug, and rubs his back. He buries his face in her lap, then sits up again.
She puts the cards down again, in a different order. "Robert, look at me, point to clock."
He points to the clock, she claps her hands, then rubs his back. "Good job!"
She repeats each drill 10 times, which takes about five minutes. Then she gives Robert one minute to play on his own, then she does two minutes of review work.
When he has his own time, Robert goes to a corner and turns the pages of a book. At the end of a minute, Frey pulls him back into her circle by asking him to pick out certain elements on the page he's turning.
"Where's the star, Robert?"
He doesn't respond, so she places his finger on the star.
Then she goes back to the cards, asking Robert to pick out the card with carrots on it. He succeeds about half the time. After five minutes, he gets another break, and this time he chooses to bounce up and down on a mini-trampoline. After a minute, Frey gets him to answer certain commands, such as counting the number of times he's jumping.
"1-2-3-4," he counts.
"Good job, Robert, that's very good counting. Look at me, Robert."
He looks at her briefly, then looks past her again.
"Good job, Robert," Frey says. "That was some good listening."
Applied Behavioral Analysis is not a new approach. The method - also known by names like discrete trial therapy or intensive behavioral intervention - is based on research first published by B.F. Skinner in 1938.
In the 1960s, Dr. O. Ivar Lovaas, a University of California Los Angeles professor, used these behavioral principals to develop a method of treatment for autistic children. The therapy uses a series of trials to shape a desired behavior or response. Skills are broken down to simple components taught through a system of re-in-force- ment.
Some alternative treatments are roundly dismissed by medical experts, but this therapy has been recommended by some physicians.
"This makes more sense than the others," said Dr. L. Matthew Frank, a pediatric neurologist at Children's Hospital of The King's Daughters, who has recommended the treatment for some of his patients. Frank said he has an unproven theory that the less time children spend in the repetitive, isolating behaviors common to autistic children - such as lining up things, rocking or flapping their arms - the better. "Working to encourage these children to interact is beneficial," Frank said.
Dr. Frank Aiello, a developmental pediatrician at CHKD, also has recommended Applied Behavioral Analysis to some of his patients. The difficulty, he says, is the lack of access to the very expensive treatment. Local school divisions don't provide it to the degree recommended in Lovaas' study, and insurance generally won't pay for it. "It's difficult to recommend something people can't find or afford," said Aiello, who is also an assistant professor of pediatrics at Eastern Virginia Medical School.
Yet requests for and questions about the treatment have increased, according to local doctors, autism support groups and educators.
One possible reason is that the diagnosis of autism is rising. Medical experts say more children are being diagnosed earlier in life, including those on the milder end of a spectrum of conditions called pervasive development disorder.
The LaBranches' battle to help their son began when, at 18 months of age, he wasn't talking as much as their two older children did at the same age.
He was evaluated several months later and found to have some delays in speech and cognitive abilities. His parents signed him up for speech and occupational therapy, but Catherine LaBranche felt Robert wasn't getting enough help.
"I knew something wasn't right, and that he wasn't going to outgrow it," Catherine LaBranche said.
She got on the Internet and started searching sites about language delays, which eventually led her to a checklist of symptoms for autism.
Many of them lined up with her son's behavior:
His lack of interest in pointing to objects. His aloofness. His preference to play by himself. His inability to play imaginatively. His poor language skills.
Last December, she took him to a developmental pediatrician, who diagnosed him with autism. By that time, Catherine LaBranche had done considerable research on ABA and asked the doctor if he would recommend it.
"I pushed for that and he agreed that one-on-one therapy would be most beneficial," Catherine LaBranche said.
So the LaBranches hired Michelle Hurst, who runs a service called Autism Outreach Inc., in Fairfax.
Catherine LaBranche made requests to psychology and speech pathology classes at Old Dominion University and Virginia Wesleyan for students interested in providing therapy for her son.
Hurst trained the LaBranches and the students at a weekend workshop in April, and the students began working with Robert in May.
Catherine LaBranche credits the therapy with increasing Robert's vocabulary from just a few words to a list of more than 50. He is using two and three-word phrases that he didn't before. And even outside the therapy room, his behavior is improving, she said. He doesn't do as much repetitive behavior, such as lining up cereal boxes, and he responds more to their questions.
The LaBranches are also trying a range of other treatments, including vitamins, the enzyme Secretin and a diet free from dairy and wheat products.
The sheer intensity of the ABA treatment - 35 hours a week - is the biggest financial drain for the LaBranches. They have applied through their insurance company, Tricare, to cover the cost, but they've been turned down three times.
Deborah Callgren, a Tricare spokeswoman, said the treatment is not covered because ABA is considered an education program rather than a medical treatment.
The LaBranches are now asking for a change in policy.
"It's an alternative treatment and not accepted," Catherine LaBranche said. "We want people to know that it works."
Local school divisions say they have had requests for the intensive behavioral treatment the LaBranches are using. The requests are handled on a case-by-case basis, according to the specialized plan that parents and instructors create for special education students.
Many autistic children in the area are served by the Southeastern Cooperative Educational Program, which covers the five South Hampton Roads school divisions, plus Franklin, Isle of Wight and Southampton. Others are served under the division's regular special ed programs or regular classes.
Greg Jacob, one of the coordinators for SECEP, said that behavioral modification principals are used in that program, but usually not on a one-on-one basis for 35 to 40 hours a week that the LaBranches want for their son.
Across the country, parents are lobbying school districts to pay for these more intensive services. That could be an expensive proposition.
In the state of Virginia, for instance, 1,519 children were identified in 1998 as being autistic, double the number in 1993. The numbers of autistic children served by SECEP has gone from around 200 in 1995-96 year to about 300 in the current school year.
Some parents are taking school districts to court, saying their children deserve "free and appropriate" treatment under the Individuals with Disabilities Education Act. Others are moving their families to areas where school divisions have paid for the intensive treatment.
The legal action has caused some experts in the field to advise caution. Dr. Eric Schopler, a professor of psychiatry and psychology of the University of North Carolina, for instance, said much work still needs to be done before ABA becomes the standard of treatment for children.
Questions need to be answered about who is qualified to give the therapy, what works best, what level of intensity produces the best results.
And even then, the treatment might not be right for every child.
The LaBranches firmly believe ABA is helping their son, and that if the investment is made now, it will save thousands of dollars in special services for him in the future.
"I feel like I'm educating the doctors and the educators," said Catherine LaBranche. "When they should be educating me."
Reach Elizabeth Simpson at 446-2635 or liz(AT)pilotonline.com
(C) 2000 The Virginian-Pilot and The Ledger-Star, Norfolk, VA via Bell&Howell Information and Learning Company; All Rights Reserved.
This news story is not produced by the American Psychological Association and does not necessarily represent the opinions of the association.