Seeking a Way to Counter Autism

BY JAKE REMALY
From the Daily Record on June 11th, 2006

CHESTER TWP. — For the last seven years, Bertie Lowenstein traveled all over the country looking for ways to treat her 9-year-old son's autism. On April 1, her son, after having his brain mapped in March, began taking FDA approved medications in very unique combinations, as prescribed by Philip A. DeFina, a neuropsychologist who lives in Chester Township. Now, she sees a big change in her son's behavior and self-esteem: He no longer screams, pulls hair or bites at school, she said, and he seems much happier. “This is the first thing I've seen that's extremely positive,” said Lowenstein, who lives in Aspen, Colo. Autism is a complex developmental disability that affects an individual in the areas of social interaction and communication. While the condition is treatable, there is presently no cure. Autism is a spectrum disorder that affects each individual differently and to varying degrees of severity. As many as 1.5 million Americans are thought to have autism today, according to the Autism Society of America. “The basis of the treatment was understanding the child's brain through real-time brain imaging technology,” DeFina said. “Doctors then worked to balance the brain's electrochemistry using available medications followed by specific brain-based educational programs,” DeFina said.

Foundation founder DeFina, a neuropsychologist for 27 years and a professor at New York University, is the founder, chief executive officer and chief scientific officer for the year-old International Brain Research Foundation. Its goal is to support, share and advance medical research on brain health worldwide. “We're ready and able to do this with more kids now,” DeFina said in an interview at his home on Wednesday. However, “to do this kind of work, however, takes millions (of dollars),” he said. Money that the foundation does not have for autism research. The foundation is hoping to change that with its first fundraiser, held at the Desiderio Tranquility Farm in Chester on June 24 from 4 to 8 p.m., and with two more fundraisers being held in New York in the coming months. The event, which costs $200, will feature wine tasting, cocktails and catered food like lamb chops and salmon cakes, Lorraine Cancro, director of development for the foundation, said. There will also be auctions and live classical and jazz music. Those interested can contact Cancro at (212) 505-3400.

Cautious optimism
Joseph M. Valenzano Jr., the publisher and chief executive of EP Magazine, a publication for families of children with disabilities and the professionals who work with them, will be honored at the fundraiser by a committee chaired by former State Sen. Leanna Brown for his work with the disabled. Valenzano, a New Jersey resident with 35 years of experience in health care, is familiar with DeFina's work with brain injured patients and will be looking into DeFina's recent work with autistic children for the magazine. In the meantime, Valenzano cautions parents from getting hopes up for this new treatment before results are replicated in further studies, he said. “In point of fact, there's not a whole lot of science” on autism, he said, but noted that DeFina is among several doctors in the nation known for this science.

Foundation focus
Most donations to help autistic people go to awareness and advocacy programs, or to treatments that focus on sedating patients and easing symptoms, which are important, DeFina said. His work, however, focuses on improving brain function. Autism and other developmental disabilities take 60 percent of the International Brain Research Foundation's focus, while enhancing brain function in comatose patients with traumatic brain injury gets 20 percent, DeFina said. Aging diseases like Alzheimer's and dementia get the other 20 percent. During the interview, his phones rang with calls from three European doctors interested in joining the foundation's advisory board, as well as a Virginia doctor interested in seeing his work, patients' relatives, special educators and hospital.

Cases in progress
Melissa Karl-Lam, a school psychologist at Somers Central School District in New York for 20 years, has been working with one of DeFina's patients since September. “He's so much happier” since his treatment in November, Karl-Lam said. “He's feisty, oppositional,” and “engaged in people in a completely different way.”According to DeFina many of his symptoms, like involuntary movements from partial complex seizures have started to disappear. When someone would ask him to do something in September he would zone out, Karl-Lam explained. Now he'll say, “No.” “ He's asserting himself,” she said, and added that she gets goose bumps when she thinks about his progress. “We are optimistically cautious,” DeFina said, but noted that the data are “very sound and show a lot of promise.”

The three cases
Although the foundation has only worked with three severely autistic children, they have had “tremendous success,” DeFina said. “They went from being severely debilitated” — flapping their arms and walking on their toes with no communicative abilities — to developing significant language skills in two of the cases, he said. “The patients have even begun writing letters,” he said “Alphabet letters, not the kind you mail.” “Not yet.”

Jake Remaly can be reached at (973) 428-6633 or jremaly@gannett.com.

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