CRACKING THE CODE A PROGRAM BEGUN BY THREE SOUTH FLORIDA
MOTHERS WHOSE SONS HAVE AUTISM IS HELPING HUNDREDS OF FAMILIES COPE WITH A
MYSTERY.
Sun Sentinel;
Larry Colvin sees his 5-year-old son as Pinocchio turning into a real boy.
When Steven Colvin was diagnosed with sever autism in late 1995, the neurologist told Larry and Susan Colvin to be prepared for lifelong dependency and eventual institutionalization.
"He said it would be better if he were mentally retarded because there are better treatment facilities for it," says Larry Colvin. "Susan was crushed, and I was angry."
The
Then they attended a conference in February 1996 put on by
Reaching Potentials, an organization started by three
Susan Colvin attended a Reaching Potentials training session, and by March they had started a 30-hour-a-week home curriculum of "discrete trial therapy," a behavioral approach that breaks goals into small segments. Trainers work one-on-one with the child, reinforcing each success. It begins with the most basic command, "Look at me," and works toward normal conversation and behavior.
When they started, Steven was mute, he would not respond to his name, his father says. He would ignore everything but what he was focused on. He communicated his wants by pointing.
One year later, Steven looks a visitor in the eye, smiles and says, "Hello." He is beginning to read, plays normally with his brother and friends. His parents say that with some support he will be able to attend typical kindergarten next year.
"The wooden child is coming alive," his mother says.
For two years Reaching Potentials has been a lifeline to
information and resources for
The nonprofit organization serves more than 200 families,
providing consultation, training and support in setting up behavior-based home
training programs. It also offers yearly conferences on autism, has trained
teachers for
All this has been accomplished with donated time, little money and the unrelenting determination of founders Cyndy Kleinfield-Hayes, Pam Gorski and Susan White (who asked that her real name be withheld to protect her son). They do it, they say, because they've been there.
Five years ago, when John Gorski was diagnosed with autistic spectrum disorder at 2 1/2, his mother found three library books on the subject, and they were 20 years old. She read that autism is a lifelong neurological disability that interferes with language and social interaction. There are only theories about its causes, no known cure, but a variety of therapies.
The picture these books painted for John's future was grim, and the advice from some experts wasn't much better.
"A school psychologist told me he was mentally retarded,
and I just had to prepare myself for that," says Gorski, a legal assistant
and mother of five who lives with her husband, Peter, in
But she didn't. Neither did Kleinfield-Hayes
or White. By different paths, each came to the conclusion that her son's best
chance for success lay with early and intense behavioral therapy that lasts one
to two years. They learned that University of
This behavioral therapy is not a cure, they are quick to point out, but a method backed by scientific data. About half of the children in Lovaas' study achieved normal functioning.
"I try not to use the word `recovery,' " Gorski says, noting that there is a wide range of disability in the autistic spectrum. “The thing to remember is that your child can improve. If you achieve that, you've done a lot."
Gorski's 7-year-old son, John, attends a typical public-school, first-grade class with help from a speech and language pathologist and a resource teacher. An untrained observer would not detect any signs of his autism, she says. White makes the same comment about her 6-year-old son, Michael, who is in a regular preschool class at a religious school.
Kleinfield-Hayes does not have that option. When 6-year-old Brandon is not engaged in a task, he still shows signs of autism: little intelligible language, loud vocalizations and repetitive hand motions.
Last August, she and her family moved from Coral Springs to Belle Mead, N.J., so Brandon could attend Princeton Child Development Institute, one of the premier autism-treatment schools in the nation.* From the time of Brandon's diagnosis, Kleinfield-Hayes has been driven to find the best program for him.
As a baby, he seemed bright and active. He smiled, sat up and walked normally. He mastered puzzles faster than his older siblings had.
But by 18 months,
At 26 months, he was diagnosed with autism.
A month later he started at
Kleinfield-Hayes was not satisfied,
however. "There were a lot of people doing great work, but it was not
right for
A sales-training manager for M& M/Mars with a psychology background, she threw all of her professional skills into her quest for answers. She read about Lovaas' research published in 1987, in which 47 percent of preschoolers who received intensive behavioral therapy for about two years "achieved normal intellectual and educational functioning" by first grade. A follow-up study published in 1993 showed that they continued to progress. Eight out of nine students who had achieved the best results at age 7 were indistinguishable from their peers in intelligence and adaptive behavior at age 13.
Kleinfield-Hayes and two other
families arranged for Lovaas' staff to come to
In the therapy, a trainer sits face-to-face with the child. One of the first drills is "Look at me." A trainer might put a small piece of candy at eye level. If the child looks the trainer in the eye, he gets the candy (or other reinforcer). As he gets more proficient, the candy is used less until it's phased out. Drills get more complex as the child progresses.
For instance, after a year of therapy, Steven Colvin now works on syntax and word inflection.
"What's your favorite thing to do outside?" trainer Dawn Mancini asks.
"I play at the playground," he says.
"I love to play at the playground," she says, and he repeats it with feeling.
Convinced of the benefits of this method, she helped develop a behavior-based intervention program at Baudhuin. White's son was one of the four students in the program.
In the meantime, Pam Gorski had started SPEC Group, Support for
Parents of Exceptional Children. The three hooked up and went to a conference
in January 1995 presented by Lovaas and UCLA's Young
Autism Project in
With agreements from therapists Jean Hays and Patty Thomas-Shutt, who had been trained by Lovaas'
staff, they organized Reaching Potentials in March. Eventually, they opened an
office in
With
The project, now in its first year with 24 students, took a
tremendous amount of time and energy to set up, says Gorski, who attends
monthly meetings at the school. With Kleinfield-Hayes
in
Michael Alessandri, a consultant on
the Nova program, often sees this kind of drive in parents of autistic
children. "The obsessive-compulsive nature of autism may be the
connection," says the director of training for The Center for Autism and
Related Disabilities at the
Although early intervention for autism is widely accepted, experts don't always agree on approaches. Some modify the environment to meet the child's needs. With nonverbal children, a picture system is sometimes used to facilitate communication. Other therapies include diet, vitamins and allergy treatment.
For preschoolers, Reaching Potentials advocates use of one-on-one behavior therapy using discrete trials to acquire basic skills. The intensive program usually lasts one to two years, Gorski says. The goal is to integrate behaviors into family, school and beyond.
The method is expensive, however, and most insurance doesn't cover it. With private trainers paid $7 to $15 an hour, plus the cost of professional supervision, a 30-hour-a-week program can cost $10,000 to $40,000 a year.
Glen Dunlap, director of the Center for Autism and Related
Disabilities at the
"I've seen too many families that have undergone significant sacrifice in the name of a treatment, only to find that wasn't the way to go for their kids," he says.
Discrete trial is sometimes criticized because in Lovaas' early research he used aversives, such as a slap on the thigh, with children prone to hurting themselves. He soon abandoned the practice, White says, but the perception has remained.
Such ignorance of current data angers White. "Some people say {discrete trial therapy) is creating robots that use rote speech," she says. "If they were reading the research, they would realize the end result of the program is generalization, taking it out of the house into real situations."
The
When he was nearly 3, Michael had a hypoglycemic episode and White was called to school. "I wish he could just say, `I'm hungry,' " she told a school administrator.
The administrator's response was, "He'll never be able to say that and you had better get used to it," she says.
"My son wouldn't be where he is today if I had listened to people," she adds.
That thought keeps Reaching Potentials going. As the demand for services grows, the challenge is to maintain quality, Gorski says. "My future vision would include a paid director and a larger staff of trained therapists who could consistently assist parents in the home."
In the meantime, the phone keeps ringing. It's
It's another "new mom," as she calls mothers who have just gotten the punch-in-the-stomach diagnosis of autism. She cannot turn her back.
At a
Later today she will leave her job early to attend a meeting at Nova. After she gets her kids to bed, she will return phone calls and send out letters.
Tomorrow, she will get up and do it all over again. She has to. She's driven.
WHAT IS AUTISM?
* Definition: A neurological condition that affects a person's ability to communicate, understand language and interact with others. The first symptoms usually appear as developmental delays before age 3.
* Cause: The exact cause is unknown. Some scientists believe there is a biological cause that affects the brain, but it has not been proven.
* Symptoms: Every person with autism is different, but characteristics may include: difficulty using and understanding language; poorly developed social skills and unusual play with toys; repetitive, self-stimulating behaviors such as spinning objects, rocking or humming loudly; uneven skill development.
* Rate: Autism Spectrum Disorder occurs in about 15 of every 10,000 births. It is four times more common in boys.
* Treatment: Early diagnosis and intervention increases a child's chance for positive development. Treatment can include behavior modification, speech and occupational therapy. Symptoms can last a lifetime but with treatment may lessen or disappear with age.
Source: Center for Autism & Related Disabilities
Resources for autism
Here are some resources for autism. For a more complete list, contact the Center for Autism & Related Disabilities.
* Center for Autism & Related Disabilities:
State-funded organization providing school and home consultation, information and training workshops to family members and professionals working with individuals with autism and related disabilities. 800-9-AUTISM or 305-284-6563.
* Autism Consortium of the
* Reaching Potentials: Private, nonprofit, parent-established organization providing training and support for setting up a home program, behaviorally based school options and outreach, resources and referrals for children with autism and their families.Sponsoring a national teleconference on autism in October. 954-321-7393.
* Autism Society of
* Autistic Child Advocates Association: Support and education
group based in
* Rescue Autistic Society: Spanish-speaking support grou based in
* SPEC Group Inc.: Support for Parents of Exceptional Children
in Broward and
[Illustration]
PHOTOS 3; Caption: Staff photo/SUSAN G. STOCKER (color)
Steven Colvin, 5, workd with trainer Dawn Mancini. He
spends up to 30 hours a week in therapy. (color)
ABOVE: Patty Thomas-Shutt, a senior trainer with
Reaching Professionals, works with John Gorski, 7. RIGHT: John with his mother,
Pam Gorski, one of three South Florida women who started Reaching Potentials to
provide education and support to families dealing with autism. Steven Colvin
practices counting, then writing his numerals.
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