BySunday, May 07, 2006From the moment parents absorb the shock that their child may be autistic, they enter a dizzying world of specialists, therapists and, alas, purveyors of snake oil. Getting the right help quickly is paramount, but it is hard to make good decisions when you are in a panic or fighting despair. For the past 20 years, the dominant way to work with autistic children has been based on Applied Behavior Analysis. ABA derives from the classic work of psychologist B.F. Skinner, who showed--mostly in animals--that behavior can be altered with carefully repeated drills and rewards. In 1987, Ivar Lovaas at UCLA published a small study with huge repercussions. He reported that 9 out of 19 autistic children taught for 40 hours a week with behaviorist methods had big jumps in IQ and were able to pass first grade; only 1 out of 40 in control groups did so. It was the first bright ray of hope in autism. Recent years have brought questions about the ABA model. When Lovaas protégé Tristram Smith tried to replicate the 1987 findings in a 2000 study, he got a more modest success rate on academic measures and virtually no gains in social behavior. Others, meanwhile, have devised new ways of working with autistic kids. One of the best known was developed by child psychiatrist Stanley Greenspan, who spent 15 years studying infant development at the National Institute of Mental Health. His method, called DIR (developmental, individual-difference, relationship based), has as its premise the idea that an exchange of emotional signals, initially between mother and infant, form the basis for learning in childhood. Greenspan trains parents and teachers to engage the emotions of even the most withdrawn toddlers by getting down on the floor and entering the child's world, helping turn repetitive acts like lining up blocks into playful interactions. He describes the method, also called Floortime, in a new book, Engaging Autism. While the majority of U.S. programs for autistic children are based on ABA techniques, DIR has made inroads, and many programs now mix elements of both. How do the techniques differ in practice? To find out, TIME visited two schools, each a model for one school of thought. ALPINE LEARNING GROUP IT'S EASY TO SEE WHY A PARENT would fight to get a child placed here. Who wouldn't want this calm, orderly world for an anxious child with all the sensitivities of autism? Alpine, in Paramus, N.J., has 28 students, ages 3 to 21, in six gleaming, light-filled classrooms. The staff-to-child ratio is 1 to 1. The $72,223 tuition is covered by the state--federal law requires a free education for children with disabilities in an "appropriate" setting. At Alpine, every goal, every lesson, every response is carefully documented in binders that track each child's progress. That is the rigorous heart of ABA, explains executive director Bridget Taylor, who co-founded the school in 1988. "I'm a scientist-practitioner; I need data," says Taylor, a certified ABA therapist with a Ph.D. in psychology. The binder for Jodi DiPiazza, 4, is easily
seven inches thick, though Jodi has been at Alpine less than a year. Like most other children at the school, she started ABA therapy at home as a toddler. In her classroom, Jodi sits quietly at a small table with a teacher. They take turns looking at photos and using a complete sentence to describe the scene ("The girl is riding a bike"). Each correct answer earns Jodi a sticker on a chart; with enough stickers she can choose a reward. ABA was once famous for its M&M rewards, but better programs now tailor positive reinforcement to the child's preferences--a favorite activity, a hug or, in the case of one Alpine student, a packet of ketchup. Though Jodi didn't talk at all until age 3, she speaks well and is mastering skills quickly with the help of two hours of tutoring in the evening. "From the moment she wakes up till she goes to sleep, everything is structured," says her mother Michelle, who is thrilled with Jodi's progress. Taylor says 29% of her students, most from ages 5 to 8, get mainstreamed into regular schools, generally with an aide. Many who remain at Alpine have limited language skills; some of the older students use electronic devices to express basic desires. The ritualistic behavior that is characteristic of autism is strongly suppressed. "Hands down," says a teacher to a child who begins to flap. "We're not a culture that accepts that," says Taylor. "Fifty percent of the battle is addressing behavior to look good." In a classroom with four teenage boys, the focus is on life skills. Johnathan learns to type a grocery list, which he and an instructor will later take shopping. Another boy, learning to use a camera, asks visitors whether he may take their picture. He uses the same words and intonation each time he asks. Robotic behavior, lack of emotion and inability to use trained skills outside school are some of the shortcomings critics attribute to ABA. A boy who has learned to play Nintendo games at Alpine, for instance, reverts to simply switching the game on and off when at home. Proponents concede certain weak points, but they also note a long record of results. Says Tristram Smith of the University of Rochester: "Anything outside ABA is basically experimental at this point." CELEBRATE THE CHILDREN THIS IS NOT A QUIET SCHOOL. The hallways are filled with the sounds of kids talking and playing. The walls are festooned with banners, photographs and artwork. Parents always ask whether it's too much stimulation, says director Monica Osgood, but the school wants its students to adapt to the "real world." Celebrate the Children (CTC), which costs $47,856 a year--paid by the state--is one of a growing number of DIR schools. It opened its doors in Stanhope, N.J., in January 2004 with just three students. It now has 41, from toddlers to teens, and is still expanding fast. TC emphasizes the expression of emotion and spontaneous thinking. Rather than work on a highly specific skill, DIR activities tend to include complex social interactions that build many skills at once. In a classroom for 5-to-9-year-olds, eight kids sit in a circle playing a game in which they pick an activity card and a card showing a classmate's face. Children earn cheers as they perform the designated activity with that classmate (giving Olivia a high five, hugging Alex). Instead of tangible rewards, shouts of encouragement, a sense
of accomplishment and what Greenspan calls the "warm, pleasurable feelings" that come from human interaction serve as a reinforcement for learning. In a classroom of 11-to-14-year-olds, kids are asked to stand in a narrow row between two strips of blue crepe paper representing water. The challenge: to arrange themselves in height order without stepping over the lines and falling "off the boat." The task combines communication skills, problem solving and visual, spatial skills. Teachers at CTC are trained to work on sensory issues and use the principles of occupational therapy throughout the day, Osgood explains, rather than in a separate program. At the core of CTC is Floortime, one-on-one, child-directed play periods. In one such session, David, 6, goes down a slide again and again. Each time he reaches the top of the ladder, a teacher playfully blocks his way, leading this very passive child to make eye contact and make his wishes known. "She wants him to move her hand or say 'Move' and be intentional," explains Lauren Blaszak, CTC's assistant director. "She's got an agenda; he doesn't know it. He keeps going back for more because it's fun." Building social interactions this way, she says, will make it easier for David to join circle games at school and sit at the dinner table at home. Osgood worked in an ABA program for six years. "It does a great job with skills," she says, "but the kids lacked the ability to think on their feet, to problem solve and to engage socially." She also feels that the ABA emphasis on "looking normal" doesn't address the reasons for behaviors like flapping and rocking: "Those are organizing strategies to cope with anxiety. Our philosophy is not to say 'Don't do that.' In DIR, we respect them for who they are but give them the tools they need for successful lives." Sometimes literally: Osgood tosses a boy a Koosh ball when he asks for something to fiddle with in his hand. Knowing to ask, she says, is part of learning to regulate oneself. While Greenspan has published impressive long-term results, his critics say there's an absence of controlled, randomized studies. He is responding with a series of studies just getting under way at York University in Toronto. Among them is work that should help illuminate choices for struggling parents: imaging studies that will compare the brains of DIR kids with those treated with ABA.
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