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Regional Archives — The Altamont Enterprise, April 26, 2007

Living with autism is an everyday struggle

By Saranac Hale Spencer

ALTAMONT — A raised eyebrow, a sideways glare, disapproving looks from strangers take a toll on Stephanie Carter. These are things, though, that her 6-year-old son, Austin, can't pick up on.

"I feel like I have to wear a shirt when I go out, saying that my son has a problem," she said. When he was 3, Austin was diagnosed with autism.

A relatively new disorder, autism wasn't identified until the 1940s. Now, it appears in one in 150 children.

"There is clearly an increased prevalence," said Dr. Anthony Malone, who practices pediatric developmental behavioral health locally. But, Malone said, there is a difference between incidence and prevalence — the same number of people have an autism spectrum disorder, but more of them are being diagnosed as such.

The current systems for diagnosis were revised in the early 1990s. The number of children diagnosed with minor forms of the disorder has gone up markedly, he said, but the number of children diagnosed with severe autism is the same as it was 10 years ago — four in 10,000.

Getting its name from the Greek word for self, autism is loosely defined by three types of solitary behavior — impaired social interaction, poor communication skills, and repetitive behaviors.

Austin, at 6, has come a long way in his verbal skills, his mother said, but he still uses picture cards to communicate. She keeps the cards in an envelope on the refrigerator door; each card has a picture of something that he might want — food, drink, a toy — and he chooses the one he needs.

The picture system is common, said Gina Cosgrove, a psychologist who teaches at The College of Saint Rose in Albany. "It can reduce their frustration a lot," she said.

Cause and treatment

Although no definitive cause has been found for autism spectrum disorders, genetics likely play the biggest role, both Malone and Cosgrove said. Each said that there is probably a genetic predisposition towards autism and that, combined with an aggravating factor, results in the disorder. Malone likened it to diabetes: A person is genetically predisposed to the disease and given certain other factors, like a sugary diet and lack of exercise, he can develop diabetes.

A 2002 study suggests that sex chromosomes can play a part in assessing the risk of autism. The study found that boys are diagnosed with autism by a ratio of nearly four to one as compared to girls.

"He’s like the ladies’ man of kindergarten," said Carter of her son, whose form of autism is mild. Austin began the Early Intervention Program when he was diagnosed with autism three years ago and now he attends the Forts Ferry school in Latham.

Early Intervention is a federally-funded program for children with developmental delays that was started in 1993. In 2005, about 530 children in Albany County got services from the program, said Richard Reed, director of the Division for Children with Special Needs.

The program uses educational techniques, like applied behavioral analysis, which is a very structured, systematic type of teaching, according to Cosgrove, to help autistic children. Medical interventions, Malone said, have not been successful. Of parents who ask about medical help for an autistic child, "I would say, ‘Work with an educator,’" he said.

In New York State, Early Intervention is run by each county and covers children from birth to age 3. After that, children can be referred to the Committee on Preschool Special Education, which is specific to each school district.

Ideally, each school district should be able to provide all of its students with the services that they need, said Cosgrove, adding, "We know the reality of that," meaning that some districts have more resources than others. Private care for autistic children is expensive, too, she said.

Several organizations in the area provide support for families who have a child with an autism spectrum disorder, she said. But of the difference in available resources, she said, "I definitely think there’d be a discrepancy there."

Dealing with Austin Carter’s autism creates a number of added expenses, said his mother, who lives in Altamont Oaks. Their home has to stay baby-proofed for him, she said, and the supervision that he requires means that she can’t work. "With autism," she said, "it’s 24 hours a day, seven days a week." His sister, Kayla, who is 16, baby-sits him sometimes, but it’s hard, she said, since he is so attached to his mother and throws tantrums without her.

Carter feels like her daughter misses out on a lot of things because Austin needs so much attention. She’d like to see more support groups for the families of autistic children, especially the siblings.

"Autism can connect you to a new network," Cosgrove said when talking about the culture around autism spectrum disorders. A study in California found that the rate of autism diagnoses went up by nearly the same amount that the rate of mental retardation went down, suggesting that some might prefer a diagnosis of autism to mental retardation because it doesn’t have the same negative connotation. "There is probably an element of truth to that," Cosgrove said.

When she’s out with her son, Carter often feels like people are judging her because Austin will throw fits. That’s frustrating, she said, because he’s really a good kid. "He’s a lot like everyone else," she said. "He cries when he’s sad, he smiles when he’s happy. He just has a different way of expressing himself."

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