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Autism researchers: Our alternative methodologies work

Pair, who have clinic in Woodbridge, N.J., give lecture on Island
Monday, November 24, 2008
By AMISHA PADNANI
ADVANCE STAFF WRITER

STATEN ISLAND, N.Y. -- They weren't quite "recovered." That's a tricky term to use when talking about children with autism.

But two controversial researchers who gave a lecture on Staten Island said many autistic children who tried out their alternative methodologies saw major improvements.

About 200 Staten Island parents attended the presentation last week at IS 24, where Dr. James Neubrander and Dr. Philip De Fina talked about unconventional ways to deal with autism.

The pair, who have a clinic in Woodbridge, N.J., said they've found that a combination of changes in diet, vitamin supplements, hyperbaric oxygen therapy and shots of methylcobalamin -- a form of vitamin B-12 -- has changed lives.

During their lecture, they showed PowerPoint slides of children's brain waves before and after trying out some of their strategies.

They also played videos of autistic children singing and interacting with other people after visiting their office for several months.

NO TREATMENT

"There is no treatment for autism, but there are ways in which we can change the environment of the brain to help normalize electrical chemical activity, which brings about positive change," De Fina said.

"Some kids respond so well that people call them 'recovered' because they don't look like the way they looked when they first started, and, diagnostically, they don't meet the same criteria as they did prior to coming."

Though the doctors said their work is based on scientific -- and not purely anecdotal -- research, Neubrander, a physician, and De Fina, a clinical neuropsychologist, said it could take at least 20 to 30 years before their theories are incorporated into mainstream science.

The pair has been called everything from quacks to geniuses but the goal of Wednesday's lecture was to give parents the opportunity to make that decision for themselves, said Ken Struve, executive director of City Access New York, Inc., a Port-Richmond based nonprofit that organized the event.

"Parents just want information that can put them in a better place to make decisions," he said.Indeed, reactions ranged from curiosity to pure disbelief.

TRY ANYTHING

Many parents at the lecture said they were determined to try anything and that they planned to set up consultations with the doctors.

Others were skeptical that the alternative -- and expensive -- methods could really help, mainly because they felt the researchers didn't provide enough information.

"I came because I thought they would have some specific data," said Lori Taliercio of New Dorp, whose 11-year-old son has autism.

"Instead, I feel like I'm sitting at a real estate seminar and they're trying to sell me something."

But a Rossville father who attended the lecture said he has been taking his 8-year-old son to Neubrander for six years and that he has seen drastic improvements.

Through the doctors' recommendations, his son has stayed away from milk and frequently receives B-12 shots.The treatments certainly aren't cheap and could set parents back a couple of thousand dollars every month.

The initial visit, including an electoral mapping of the patient's brainwaves, costs about $800, Neubrander said.Most patients have neuro feedback sessions twice a week at about $100 each session and B-12 shots cost several hundred dollars a month. The more treatments a parent wants for their child, the more it costs.

For some parents, every penny would be worth it as long as it gets their child out of the corner and into the playroom to interact with other kids, said Chris Caruso, Executive Director of Kids Connect USA, a Rossville-based integrated socialization program for children with autism and other disabilities.

URGES CAUTION

Mrs. Caruso, who wasn't familiar with the two doctors, she said she would caution parents to do careful research before jumping into anything.

"Parents really want to do anything, anything at all, to help their child," she said.

"They're desperate for any kind of solutions. That's why I always tell parents to do their homework and to find out what's going to work for them." Amisha Padnani covers education news for the Advance. She may be reached at padnani@siadvance.com.

3-11-08 Featured in the Staten Island Advance.

Quote: 

 

STATEN ISLAND, N.Y. -- rst glance, it's difficult to tell which children at Kids Connect USA socialization program have an autism spectrum disorder (ASD) and which ones don't, as they play happily together on a recent Saturday afternoon at Friends Preschool & Daycare in Rossville.


They look like any other group of youngsters, playing board games, doing arts and crafts and finishing phrases written on scraps of paper and picked randomly from a box.

However, this program is unusual in that it integrates both typically developing children with those who have been diagnosed with disabilities such as ASD, attention deficit hyperactivity disorder and social anxiety disorder.

Fitting in socially is a major hurdle for most children with these disabilities, and the goal of the program is to equip these youngsters with the ability to interact with children who do not have such disabilities, said Chris Caruso, Montessori teacher who leads the sessions with Piera Bacolo, an applied behavior analysis therapist.

What is lacking with these children is their social skills, Mrs. Caruso said.

"With the parents we have spoken to, they never had an outlet, a place for their children to have extracurricular activities where they could be around typical children and learn communication skills," she noted.

The hope is that socialization programs will help children with ASD grow into self-sufficient adults, said Donna Long, executive director of The Grace Foundation, Westerleigh, which is not affiliated with Kids Connect.

The Grace Foundation provides educational, recreational and social programs as well as support services for families affected by ASD. The Foundation's Social Skills program is for children within the spectrum, but there are a few siblings who attend and high school students who volunteer.

"What we try to promote is independence and productivity in the child and young adults to live an independent life in our community," Mrs. Long said, pointing out, "Socialization is a big part of it."

So far, parents of children in the program haven't requested integration, but if that occurs, the Foundation will consider it, added Mrs. Long.

TREND OF INTEGRATING

Many of the preschools on Staten Island and in New Jersey do integrate children with and without disabilities in their classrooms, and Mrs. Bacolo sees this as a positive thing.

"I've been in this field for 18 years and just by working with children with these disabilities, you know that placing them with typically developing children helps them to socialize on a different level," she said.

She characterizes children affected by ASD as more likely to throw a tantrum than calmly assert themselves when upset. It can be difficult teaching these kids to take turns, share, allow another child in their personal space and to be flexible.

"These children shy away and sit in a corner at a party and at school," Mrs. Caruso said. "They don't know how to initiate a conversation."

When children diagnosed with these disabilities are the only ones in a group, they tend not to make eye contact or interact, Mrs. Bacolo has observed. But, when typically developing children are added to the mix and play and talk with the disabled children, she notices an improvement.

Kids Connect began in October with nine children. Now it has 18 kids with disabilities and 17 typically developing children. The youngsters are divided into two age groups: 3 to 5 and 6 to 10. Groups run in 8-week sessions on Saturday afternoons and have a maximum of 10 children in each class, which run one to two hours.

ALL ABOUT FUN

From the child's perspective, Kids Connect is just fun and games.

"I like hanging out with other kids; I like my friends here," said Frank Schimenti, 10, of Grant City, who has a disability.

"I do like doing the games and making stuff," he added.

Games such as Sorry, Trouble and Connect Four are Frank's favorites.

On a recent afternoon, Sydney Reilly, 4, of Arden Heights, a typically developing child, enjoyed making shapes such as bread, a chicken leg and a flower out of clay.

During the casual play, Sydney and the other children at her table shared clay, molds and tools, helped each other with their projects and talked about what they were making.

Sydney's mother, Dawn, is an assistant at the school and the typically developing children of the teachers also participate in the program.

"Our own children are in the group; we think it is important for them to have a great understanding of all children and relate to all children," Mrs. Caruso said.

She and Mrs. Bacolo selected other typically developing kids to be a part of the program as well.

"We hand-pick very social children that will aid in our approach to interact with our diagnosed children," Mrs. Caruso explained.

That includes Francis Fundaro of Westerleigh, a nephew of Mrs. Caruso's who volunteers at Kids Connect to fulfill community service requirements for confirmation.

Francis said he most enjoys the conversations and the way everyone interacts with each other in the group.

BIG IMPROVEMENT

Joseph Collazo, 4, of Great Kills, who has a disability, used to keep to himself often and was socially delayed. School helped, but Kids Connect gave him the extra push he needed, said mother Danett Massari.

"It's amazing how much he's grown here at Kids Connect," Ms. Massari said. "He initiates play; he plays with friends; his speech is improving; he's speaking in full sentences."

"The kids are getting skills without realizing it," said father Frank Schimenti. "They are having fun at the same time."

Because of the class, Frank is handling "playground politics" better, said his dad.

Arden Heights residents Domenica and Tony Morreale enrolled their son, Anthony, 6, who has a disability. While Anthony has been in social classes before, this is the first one where he's with typically developing kids.

"If you think about it, there are no classes out there in the typical world like this to bring a child out of their shell," Mrs. Morreale said.

Janine and Bob Albano of Arden Heights enrolled their son, Bobby, 4, in the Kids Connect class because, while he was excelling academically, he needed to enhance his social skills.

"It's important for Bobby to socialize with typical peers," Mrs. Albano said. "That is what you strive for as a parent: that he would be able to socialize and function like a typical child."

"Bobby's making new friends, not clinging just to one person," Mrs. Albano added.

Bobby also has become better at sharing and taking turns, both at school and with sister, Gianna, 2.

For more information about Kids Connect, visit the Web site at 
www.kidsconnectusa.com or call 718-874-6109 or 718-605-6930.