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Legos: building blocks in autism therapy
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Posted by sylvia on Monday, August 03, 2009 (17:52:17)
OCRegister By MARIE MCCULLOUGH
VOORHEES, N.J. The Lego raft carrying the Lego castaways approached the Lego island, "chased by raptors."
Lewis Roberts, a 12-year-old from Medford, N.J., moved the raft an inch, then another young filmmaker snapped a digital camera. A third boy consulted their script.
"Quiet on the set!" In the sudden silence, the boys let out a raptor-like "ROAR."
Lego animation is like a cartoon. The illusion of movement is created with a sequence of slightly different photographs of the colorful plastic brick construction sets.
But this wasn't just fun and games. It was "Dr. Dan's Lego-based Social Development Therapy" — one of the many interventions that have been developed to teach social skills to children with autism.
The eight preadolescent boys who gathered one evening recently in the playroom at the Center for Neurological and Neurodevelopmental Health in Voorhees, N.J., have been diagnosed with some form of the mysterious malady.
Their weekly hour together under the watchful guidance of three trained adult leaders helps them learn to interact and communicate socially — crucial abilities that are, by definition, impaired by the neurological disorder.
"They're willing to be social creatures — as long as they can get this Lego thing built," said the aptly named Daniel "Dr. Dan" Legoff, the center's pediatric neuropsychologist.
Early intervention helps
At first glance, the $45 session just looked like a bunch of boys having fun, not surprising since Lego Club members have good language skills and average or above-average intelligence. In contrast, children at the severe end of the autism spectrum may be mute and have catatonic behaviors.
But signs of problems were soon evident. A boy wearing a long-sleeve T-shirt stood amid the hubbub, staring at the floor, obsessively pulling the hem of his shirt – until leader Greg Shugar gently drew him into an activity. At a table, Lily Brown, another leader, helped two boys revise their "script" – a sheet of lined paper covered with angry scratch-outs and scribbles.
Jonathan Shanahan, 13, of Riverton, N.J., rocked from foot to foot and acknowledged that earlier that day, in school, he threw a pencil at a classmate.
"He's my archrival," Jonathan declared, holding a winged Lego beast he had created.
Autism is a heartbreaking puzzle. The cause is unknown, although theories abound and genetics seem to play a role. The incidence of autism has increased dramatically over the last few decades, yet no one knows whether this reflects greater awareness and improved diagnosis, or environmental changes, or both.
The encouraging thing, said Mark Mintz, president and founder of the center where the boys were gathered, is that early intervention usually helps: "You can change the developmental biology."
The surest way of doing that is unclear. Countless approaches, techniques and medications – not to mention alternative therapies, special diets and vitamin injections – are available. Few have been subjected to rigorous studies of effectiveness.
In Legoff's opinion, too many popular strategies involve "skillstreaming" – systematically explaining, modeling, and role-playing acceptable social skills to children.
"I found that approach to be, first, boring and painful to go through for the kids. And second, it didn't seem to work," said the psychologist, who has treated children with neurological disabilities for 20 years. "I needed to find something that they could practice but that they would enjoy and be motivated to do."
Birth of a club
About 15 years ago, during post-doctoral training in Honolulu, Legoff noticed that his autistic patients, most of them boys, ignored a playroom full of toys – except for Legos.
A hallmark of autism is an obsessive dedication to one or two interests or activities – typically involving taxonomies, mechanical systems, hierarchies.
"A couple kids came with Lego creations they made at home," Legoff recalled. "In the waiting room, these kids started talking to one another, which surprised their parents. These are kids that don't have any friends because they're socially rejected or isolated."
Thus was born the Lego Club.
To force communication and collaboration, Legoff assigned rotating roles. The "engineer's" design had to be acceptable to the "builder," who had to get parts from the "supplier."
Jonathan's year-old group, one of eight at the center in Voorhees, has reached the club's premier level – "master builder" – so now members devote their sessions to producing stop-action videos. These are shown at the Lego Club's annual "film festival," attended by adoring fans (relatives).
"I feel bringing Lewis here has brought him out of himself," said Karen Roberts, mother of one of the filmmakers. "He's loved Legos since he was a tiny kid. But before this, he didn't really socialize a lot."
Lynda Shanahan, Jonathan's mother, said: "I wouldn't say he has dramatically changed since coming here. The diagnosis is like layers: Peel away one problem and another comes up. But I have seen growth. This has helped him get a group of friends where he fits in. It's built his self-esteem."
Newport Beach clinical child psychologist Kristen Iverson uses Legos to work on communication and social skills with her patients with autism. For younger children who need to learn conversational skills, she plays a game that uses Legos as cues for asking questions and sticking with a topic.
"I think it's interesting to use something that motivates them as a way to get them to engage in things that are less motivating, which is learning new social skills," she said. "It results in them having a good time at the same time as they're learning new skills."
Getting results
Legoff – who says he's tried and utterly failed to get freebies from the Lego company – has made modest efforts to popularize his therapy. He has published two studies of its effectiveness in medical journals. He has given presentations to several school districts.
And he has done collaborative research on the methodology with Simon Baron-Cohen, a distinguished psychologist at Cambridge University's Autism Research Centre in England.
In a small study submitted for journal publication, Baron-Cohen and colleagues found Lego therapy more effective than a better-known social skills intervention at reducing autistic behavior. It also was better at improving social interaction on the playground, apart from the therapy group.
"If these findings remain positive (in larger studies), then these approaches could be used in schools and clinic settings to make them widely accessible," the study concluded.
Yet Lego therapy hasn't really caught on, for several reasons. It's more difficult and expensive to do than it may look. It's not suitable for severely autistic children. And it's not based on any particular theory of what is wrong in the autistic brain.
"Because it evolved a-theoretically, it doesn't fit a particular theoretical framework. A lot of professionals don't like that," Legoff said.
Even Bancroft Neurohealth, a Haddonfield, N.J., treatment organization where Legoff used to work, no longer offers Lego therapy, said Matthew Sharp, principal of Bancroft Elementary and Preschool.
But Sharp tells families about it and refers them to the Voorhees center.
"I think it allows socialization in a unique way," Sharp said. "And when a child has a birthday, now he has friends to invite back to the house, or to a movie night. So all these cool things can emerge from this group."
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Autism center has more room
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Posted by lightfoot on Sunday, February 24, 2008 (12:18:21)
By Gretchen Becker
With operations under a new roof with more space, the Verbal Behavior Autism Center [at; 9830 Bauer Drive, Indiana, ph; (317) 848-4774] has room for kids to take wagon rides, learn in a motor skills room, visit a library and even ride a bike.
VBCA was founded in June 2003 with eight families in its first location for on-site behavioral therapy near 91st Street and College Avenue, said Jeffrey Medley, president and one of three founders. The nonprofit organization then operated out of two homes, one in Carmel and one in Fishers.
"The foundation is grass-roots," said Medley, who runs a technology company. "It was founded by parents for parents."
Currently, 30 kids ages 2 to 12 spend their days at the center, Medley said. Most work with therapists 20 to 30 hours a week to improve verbal, behavior and motor skills. There is room to gradually add 20 more children with autism or autistic tendencies.
Instead of cramped space in houses where there often wasn't room for everything therapists wanted to do, now each child has a room, and the rooms are set up for their needs and interests.
The new space is in an office complex in southern Hamilton County. At 16,000 square feet, it is just north of 96th Street, between Keystone Avenue and Allisonville Road.
"It's centrally located to serve the nine-county area," Medley said.
There is room to develop a space for conferences, an outdoor area behind the building for a sensory garden and play area, motor skills room, computer lab, art room, library and a store where children can exchange play money for goods, in turn teaching them life skills, Medley said.
"We don't look at a cause or a cure but the treatment," he said.
Goals are different for each child, said Medley, whose son Noah, 10, attends VBAC.
Carl Sundberg uses the Assessment Basic Language and Learning Skills to create an individual plan for each child and to train the therapists who work one-on-one with children in the program, which costs $50,000 to $60,000 a year. Insurance plans accept some payments for some patients, Sundberg said.
In Indiana, employees with group insurance must have some sort of coverage for autism treatment, Medley said.
"We're really relying on insurance right now," Sundberg said. "I'd like to get to a point where we can offer scholarships."
The Assessment Basic Language and Learning Skills was developed by James Patterson and Sundberg's brother Mark Sundberg, and assesses children in 25 social areas.
"Language is our primary goal," Sundberg said. "We're also working on behavior and social skills, but language is the basis of that. . . . We're trying to get kids into school in a year or two."
Some kids won't be able to transition into school, but they may be able to go to a less restrictive environment, Sundberg said.
Some parents, like Chris Clarke, have streamlined their children into mainstream schools. Clarke is another founder of the organization who still sits on the board.
"There is synergy gained from having all of the operations under one roof," Clarke said. "We want to be the best quality provider out there for children with autism."
Indystar.com
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Therapy & Treatments : The Right Fit
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Posted by sylvia on Saturday, March 25, 2006 (08:02:44)
TBO News
By Donna Koehn
In the story of the elves and the shoemaker, the little sprites work all night long to produce neat rows of perfect shoes.
Laura Crawford works her magic under the bright fluorescent lights of a Target department store.
Beaded purple high heels, the right discarded a giant's step from the left, are whipped into place in the proper box, proper size, proper shelf. As fast as customers manage to mangle her work, she's a blur of efficiency that fixes the mess without pause.
Until a co-worker approaches.
"Laura, you let me know when those brown boots go on sale; I've just got to have me those boots," the seasoned employee says, smiling down at the slender redhead kneeling by shoe boxes.
Laura freezes, her face empty of expression. She doesn't look up.
"How am I supposed to know? I don't put the price on them."
The co-worker drifts away, and it's time for job coach Mike Chapman to step in.
"She was just asking you, being friendly, like a friend would ask," he says quietly.
"Oh."
And she's back to her charges, those errant shoes the gosh-darn customers keep messing up.
Laura Crawford, 22, has autism. As she strives to navigate a tricky world of social cues and nuances she cannot decipher, job coaches from the TEACCH program encourage the world to give a little back to her.
It's part of the philosophy of the renowned research, education and job training center that began at the University of North Carolina, Chapel Hill, 33 years ago.
TEACCH was born when parents united to fight institutionalization of their autistic children in the early 1970s. But those children grew up, and the Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH) grew with them.
Now, with nine sites throughout the state of North Carolina, it has helped place hundreds of adults into a variety of jobs -- both menial and cerebral -- that capitalize on their wide range of skills. They drive trucks, work in banks, repair computers and conduct lab research.
Accepting 'Culture Of Autism'
One guiding principle from the beginning has been acceptance of what director Gary Mesibov refers to as "the culture of autism."
"We use this to mean that people with autism are a group distinctive in and of itself," says Mesibov, who joined TEACCH in 1974. "They have common characteristics that are different, but not necessarily inferior, to the rest of us. Some of them have a higher IQ than I do."
Chapman, who left studies in physics to become first a job coach, then director of supported employment for TEACCH, spends 40 to 60 hours assessing each person. He looks for strengths and weaknesses to find the right fit, both on the job and off. The program tries to help clients socialize and have a little fun.
"This doesn't necessarily mean taking our values and putting those on them, but respecting their own," he says.
In Laura's case, it meant convincing management at Target to allow her to concentrate on the shoe department rather than mastering all areas of the store -- what's expected of most other employees. Like those size-9 purple pumps in the size-9 box, Laura needed to find her spot.
"She just can't ignore messes," says Gabe Byars, who studied the evolution of clams at Duke University before shucking that three years ago to become a TEACCH job coach.
"Laura got the job at Target herself. One day, she was shopping there with a friend and just had to start folding the clothes," he says. "A manager came up to her and offered her a job."
Laura's work ethic is never questioned; one day she told her manager she wanted to go ahead and work another six hours so she could have every shoe perfectly placed. A tangle of red rubber flip-flops last summer nearly drove her to distraction.
So, in addition to trying to help her learn how to smile and greet customers -- a tough part of the job for her -- much of Laura's coaching has centered on how to settle for less than perfection.
Compared to the fly-by-night teens who often staff retail, Laura is a manager's dream. The Target store at which she works in Durham has asked TEACCH for more workers. Another already on the payroll does office work.
"They are our most reliable team members," says Laura Smrecek, executive team leader for human resources. "They want to come to work and do their jobs."
Dedication is one of TEACCH's selling points to employers; tax incentives grease the wheels. Sick days go mostly unclaimed. Job coaches for mentally disabled clients learn the jobs along with them and stay at their sides all day, if need be, at no charge to the employer.
But in return, employers have to give a little. Usually, it isn't much.
Problem On The Dish Line
SAS, a business analytics software company in Cary, hired a team of TEACCH clients to wash and sort dishes in its spacious company cafeteria. The dish washers mingle with employees at company picnics, swim alongside them in the SAS pool and work out with busy executives in the weight room.
But team member Ronnie Peterson, 35, had a problem.
From time to time, the TEACCH client would run screaming from the dish room, dashing across the cafeteria, crashing business lunches and startling working parents as they shared a meal with their children from the company day care center.
Instead of issuing a pink slip, Ronnie's boss allowed his job coach to analyze the problem. The first solution was to teach him how to better manage stress and give him a place where he could go when he became overwhelmed -- a basement that contained his bellows. The second solution was even easier -- slowing down the dirty dish conveyer belt by just a couple of seconds to ease his frustration.
Now, Ronnie and his co-workers sing and dance to rap music as they spray food from dishes and sort forks and spoons. His "screaming place" has been relabeled the "relaxation place."
"Sometimes it's so simple," says Glenna Osborne, TEACCH program consultant. "Sometimes it seems too simple."
Success may mean recognizing and capitalizing on the autistic clients' unique strengths.
Meredith Daniels, 27, has a flat affect and eyes that hold the gaze just a little too long. A stranger might sense something is wrong but might not guess autism.
A whiz at organization, she types well and enjoys creating graphic designs on the computer. She's also obsessed with rainbows.
Now in her fourth year working at the TEACCH Greensboro office, Meredith combined those into a color-coordinated filing system that is a marvel.
"And she did the whole system unasked," Osborne says.
Thinking Disney Thoughts
Sometimes job coaches use the object of an obsession to provide rewards.
Sara Redmon, 21, works as a janitor at a client day center. The "structured teaching" approach at TEACCH means her daily instructions are explicit, right down to the number of squirts of Windex to use on each mirror. But also spelled out on her clipboard: five minutes to "Take a break and think of DISNEY!"
"Well, I wasn't going to say anything, but yes, I love 'DuckTales' and 'Darkwing Duck' " cartoons, says Sara, as her eyes light up. "If I think of them, I can get through the day."
She also is addicted to anything featuring actors Tim Curry or Patrick Stewart (Capt. Jean-Luc Picard of "Star Trek").
"And, of course, Vincent Price."
Redmon's mother, Barbara, calls her doe-eyed redhead "the light of my life."
"When we lived in Tennessee, it was all about trying to change her," she says. "But that's like trying to put a round peg in a square hole. All they had when she was growing up was behavior modification. When she would blow, she would be punished, but that's what was stressing her to the point of overload."
Sara pipes in: "It's like asking a computer to change its programming."
Debate continues about the best way to reach people with autism, Mesibov says. TEACCH was the result of one man's resistance to common thinking of the day.
Eric Schopler, retired founder, studied with Bruno Bettelheim, the psychologist who theorized decades ago that autism was caused by cold, distant mothers who rejected their children. Treatment required the children to climb on cold, unyielding statues of women so they could better understand what their mothers were really like.
"Eric kind of figured anything would be better than that," Mesibov says.
Schopler instead stressed the need for parents to have an important role in the care of their children. As the parents interacted and their sense of advocacy grew, they brought their children to a breakfast for state legislators, who agreed to fund the program, established under the umbrella of UNC's psychiatry department.
"Folklore is that we brought a kid to the breakfast who liked to dip neckties in grits," Mesibov says.
It's Free To State Residents
TEACCH receives about $5 million from the state and matches that through private donations, grants and training activities. Professionals from throughout the world come to North Carolina to learn about it. The program is free to North Carolinians, and many families have moved to the state for it. That isn't encouraged, as TEACCH clients already face a five-year wait for services.
Although TEACCH also is a hotbed of research into autism, including studies on brain imaging and the search for the specific genetics involved, Mesibov says it sometimes gets a bum rap as "giving up."
He readily admits that no one there is trying to erase autism or hold out hope for a simple answer.
He feels sorry for parents who go broke trying to find the right diet or therapy to rescue their children from the mysterious brain disorder. Although there is no shortage of anecdotal tales of children who have been cured, the empirical data so far are lacking.
"One of the biggest drags on the field of adult autism is that there's 'the' cure," Mesibov says. "So people tend to block the idea from their minds that these kids are going to grow up."
Barbara Redmon sees obvious differences in Sara, who now speaks with animation, hand gestures and a vitality that belies her autism.
"This program has helped me socially, to be more expressive and more open to change," Sara says. "I was very upset, very stressed before."
As all parents do, Barbara once dreamed big for Sara.
"Now, I think of a successful life as one that brings her happiness," she says.
"Sara has never felt understood -- until now. Just to have her understood is so wonderful."
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Therapy & Treatments : Special Kids Video Modeling Therapy Programs
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Posted by sylvia on Friday, May 27, 2005 (14:43:57)
Genetic Engineering News
Helping Toddlers, Children and Teens with Autism, Down Syndrome, Mental Retardation and Developmental Disabilities Learn to Speak, Read, Write, Socialize, Self-Help And Play
Pioneered by a father of a boy with autism, Special Kids(C) Video Modeling Therapy Programs this week celebrates distribution in a record 30 countries, helping children the world over with a variety of developmental, cognitive and learning disabilities acquire speech, reading, writing, early academics, personal hygiene, self-help, social and play skills.
"With more than 12 years of countless success stories behind us -- as well as numerous clinical studies that all support video modeling as an effective teaching tool for toddlers, children, teens and others with developmental disabilities -- we're thrilled to see our Video Learning Programs now in 30 countries around the world," says John Sprecher, founder of Special Kids and father of Jeff, a young man with autism. "We encourage anyone who has a child or teen with a developmental, cognitive or learning disability to consider the positive impacts that video modeling -- essentially a highly visual therapy -- can have on their son or daughter, as it has countless other boys and girls."
Special Kids is a company founded almost by accident. In 1989, John Sprecher noted how his son Jeff, then two and newly diagnosed with autism, responded to certain television shows. Sensing an opportunity to teach, Sprecher developed an "alphabet" and "numbers" home video program -- and the previously non-verbal Jeff learned to identify, and speak, the alphabet and numbers within three months. Numerous parents borrowed this program with similar success, then encouraged Sprecher to author an article in the Autism Society of America's magazine.
Sprecher did so - and the demand for programs was overwhelming, with more than 300 letters received from parents and teachers around the world, encouraging Sprecher to mass produce his programs. Within four years, a library of Special Kids Video Modeling Therapy Programs was introduced for sale.
Today, clinical studies show that Video Modeling Therapy Programs are highly effective in teaching children with autism, Down Syndrome, mental retardation and other developmental disabilities. A total of 11 Special Kids programs are now available, as well as a variety of supplementary products.
"Special Kids truly is a case of necessity being the mother of invention," Sprecher says. "Today, one boy's autism has now helped children, parents and teachers in 30 countries -- and more than 500 United States school systems -- acquire communications, social and play skills they might not otherwise have. That makes their lives better, as well as the lives of their parents and caregivers. There's nothing more rewarding than that."
For a complete listing of all Special Kids Video Modeling Therapy Programs, as well as ancillary teaching products, visit http://www.special-kids.com or call 800.KIDS.153. Testimonials, testimonial interviews with parents, product samples, product samples for review and other support materials are all available FREE upon request to milissa@special-kids.com
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Therapy & Treatments : Relationship Development Intervention(tm) Program
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Posted by Sylvia on Wednesday, May 18, 2005 (13:58:33)
Medical News Today 20/04/05
Preliminary research indicates that the Relationship Development Intervention (RDI(tm)) program may help children with Autism Spectrum Disorder (ASD) achieve improvements on the Autism Diagnostic Observation Schedule (ADOS), a standardized protocol for observation of social and communicative behavior associated with autism.
The research, published in this month's Autism Spectrum Quarterly, indicates that 12 of the 17 children in the study group improved in at least one category on the ADOS.
The RDI program is a parent-based clinical treatment that addresses the core problems faced by all individuals with ASD, such as learning friendship, empathy and a love of sharing their world with others. The RDI program is based on extensive research in typical development and translates research findings into a systematic clinical approach. Dr. Steven Gutstein, author of the study, called the findings encouraging.
"It is clear that individuals with ASD can benefit from our completely new way of thinking about and treating their deficits," said Gutstein. "We are challenging families and professionals to think beyond achieving mere functionality as a successful outcome for individuals with ASD; our reference point for success in the RDI program is quality of life." However, Gutstein was careful to point out that the small sample size needs to be taken into account when considering the implications of the research. Additional research is underway.
The study observed 31 children - all between the ages of two and nine and all with ASD - during a 16-month period. The families of 17 children participated in the RDI program while a control group of 14 children of similar diagnoses, ages, cognitive and language functioning participated in other treatments. After 16 months, 70 percent of the children in the RDI program had improved in at least one diagnostic category on the ADOS and 13 of the 17 RDI children were attending regular education settings without significant support.
In contrast, not a single child in the non-RDI group had improved in any diagnostic category of the ADOS and none had moved from a special to a regular education setting during the same 16 months.
About Connections Center
Established in 1995, the Connections Center for Family and Personal Development, based in Houston, is a multi-disciplinary program to develop innovative evaluation and intervention programs for people with relationship disorders. Led by Drs. Steve Gutstein and Rachelle K. Sheely, the Connections Center staff provides a full range of evaluation and treatment services, including RDI. They provide education and training to families and professionals worldwide. More information is available at www.rdiconnect.com
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