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Moshenko works to change stereotype

Autistic son inspiration for UB staffer's efforts to increase awareness of disability

Published: September 12, 2002

By DONNA LONGENECKER
Reporter Assistant Editor

Dustin Hoffman's performance in the movie "Rain Man" is the image that comes instantly comes to mind when most people think of autism, says Monica Moshenko. And she's determined to change that.

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Nine-year-old Alex is the motivation for Monica Moshenko, an administrative assistant with the Great Lakes Program, in her efforts to help parents of children with autism.

Moshenko, administrative assistant for UB's Great Lakes Program, wants to destroy stereotypical views of people with autism and replace them with a multi-faceted awareness of the spectrum of disorders classified as pervasive developmental disorders (PDD). More than 500,000 people in the U.S. are estimated to have some form of autism, including Moshenko's 9-year-old son, Alex, who has Asperger's syndrome.

Four out of five children diagnosed with autism are boys and those diagnosed with the condition often exhibit common traits that vary only in the severity of their impairment of the ability to communicate and socialize. There is no cure for autism and no known biological markers for the disease.

"Autism is the third leading developmental disability in the country," says Moshenko, "but it only receives 5 percent of the total funding awarded for research."

Her commitment to finding a cure for autism includes organizing a 5K walkathon, to take place at 1 p.m. Sept. 29 in Delaware Park, to raise money for the National Alliance for Autism Research (NAAR). The organization is the largest non-governmental supporter of autism research in the U.S., committing $10 million in the past six years alone to more than 117 autism research projects and fellowships around the world. For more information about the walk or to register, contact www.autismwalk.org or call 522-9185.

Honorary chairmen for the event, which will take place regardless of the weather, are boxer Baby Joe Mesi and Assemblyman Sam Hoyt.

Moshenko has garnered support for the event from members of the entertainment world as well, including actor Jim Carey, who will film a movie in Western New York this fall, and Buffalo native Tom Fontana, award-winning writer/producer of such hit shows as "St. Elsewhere," "Homicide: Life on the Street" and "Oz."

In addition to her work on the walkathon and her duties at the Great Lakes Program, Moshenko last year organized a highly successful conference that attracted nationally recognized experts on autism. About 1,000 people attended the conference, which was co-sponsored by the UB Department of Counseling, School and Educational Psychology.

Moshenko's inspiration—and the motivation for her near single-minded focus in doing everything she can to educate parents of children with autism—is her son, Alex.

"Alex is very high functioning. He's been able to override a lot of the challenges—challenges that are often lifelong—due to really good services and support that I've really pushed for inside the school setting, as well as outside," says Moshenko.

In fact, Alex just finished five weeks of speech therapy at the UB Speech and Hearing Clinic, part of the Department of Communicative Disorders and Sciences in the College of Arts and Sciences.

"I would say it (the UB clinic) is one of the best in the country, with excellent evaluations and staff," says Moshenko.

Alex reads well above grade level, she says, and for someone so young, he appears to choose his words carefully.

In fact, while he is very articulate, conversation is work for Alex, his mother says. He works at making eye contact—something many children with autism have difficulty doing—and works at remembering what it is, exactly, he wants to say.

Yet, it's important to remember, Moshenko adds, that a brief encounter with Alex doesn't give a true depiction of what is at stake for most children who have autism but have yet to be diagnosed. They often are ostracized by their peers and segregated from their classmates. Alex, in fact, was placed in the most restrictive classroom environment, which is the worst environment for someone with autism, says Moshenko, until he finally was diagnosed with Asperger's syndrome and began intensive therapy.

Misunderstandings abound as to what really is going on in young children who begin to exhibit symptoms of an autistic disorder. Mental illness, mental retardation, labeling a child as a "problem child," and bad parenting have all been attributed to those who have the condition.

"Children with autism are often misdiagnosed as having attention deficit disorder because people don't know the specifics of what to look for," Moshenko says. "There aren't enough trained developmental pediatricians, psychologists and psychiatrists—people who have the expertise to know what differentiates different forms of PDD," she says.

The services Moshenko has often single-handedly sought out for Alex have been intense and extensive, including occupational, behavioral and sensory awareness therapy, and many visits to a physician in Rochester specializing in autism.

Just getting a diagnosis of autism was a circuitous journey for Moshenko and her son due to misunderstandings of Alex's behavior by school personnel and trying to find the right doctor who recognized the symptoms.

"Even though I was searching for answers for three years, there were people put in my path for the right reasons at the right time and I didn't give up the quest of looking—I didn't accept the status quo diagnosis from teachers and other people in that field," she says.

While UB is a sponsor of the walkathon, Moshenko hopes one day that the university's medical researchers will take an interest in autism.

"We've got a great medical school; we've got everything here to do autism research," she adds.