The spectrum of the disorder requires a spectrum of responses
By: Nick Norlen
When Lorell Levy’s son was 2 years and 4 months old, he started losing his language.
His once extensive vocabulary was reduced to just three words.
Soon after, he was diagnosed with autism.
At the time, Ms. Levy was a special education teacher.
Since then, she became a learning consultant at Town Center Elementary School in the West Windsor-Plainsboro school system.
Now, she helps students who face disabilities similar to her son, who, 19 years later, is a freshman in college.
"Every child has potential," she said. "Every child is going to learn."
April is Autism Awareness Month and West Windsor-Plainsboro district schools will participate in several fundraisers for research over the next few weeks.
But those affected by the disorder on a daily basis said awareness is about more than a magnet on the back of your car.
"I think the biggest misconception is that all autistic children exhibit the same behavior to the same degree and intensity," Ms. Levy said. "People aren’t aware that autism is a spectrum."
According to Ms. Levy, children on the autistic spectrum can range from "very low-functioning children who are really non-verbal and who have very serious social issues" to high-functioning students in mainstream classes.
District Special Education Supervisor Deborah Batchelor said the school system has three in-district programs for students with autism, including two classes at the Millstone River School for students in first through fifth grade, and one at Grover Middle School for students in grades six through eight.
In addition, she said a large number of students on the autism spectrum are in preschool, some are enrolled in the Mercer County Special Services School District, and others are in mainstream classes, resource rooms or self-contained sessions.
"For a whole spectrum disorder, we want a whole spectrum of services available," said Ms. Levy.
In total, there are approximately 120 students on the autism spectrum in the district, she said.
One of them is 11-year-old Yaamin Kahn, a fifth-grade-level student at Millstone River School.
His mother, Zakia Kabir, said he was approximately 3 years old when he was diagnosed with autism.
She said her son exhibits symptoms such as no eye contact, flapping hands, and little responsiveness to communication. He receives speech therapy and occupational therapy.
He’s not alone.
A study of 2002 public health and school records released in February by the Centers for Disease Control and Prevention shows that New Jersey has the highest rate of 8-year-old children with autism spectrum disorders in the country at one in 94.
But Walter Zahorodny, director of the New Jersey portion of the study, said the study was "not developed to identify risk factors or causes."
"The rate is significantly higher in New Jersey than in other states," he said. "We don’t know why."
Part of the reason, he said, could be that New Jersey keeps better records of its autistic students, but it’s impossible to know for sure.
"It could also be that there are some factors specific to the demography or the environment of New Jersey that makes us have a higher rate, but that’s for other studies to look at," he said.
Ms. Levy said she thinks it’s a combination of different factors.
"We’ve had very good services in New Jersey, so there are people coming here looking for services," she said.
Ms. Kabir agreed, and said she has seen families move from as far as Texas and Iowa because of their belief that New Jersey has superior services.
Regardless of the reason for the higher rate, the CDC study is about more than just cold numbers.
"We could use this data to explicitly show what educational health needs of these affected children are," said Mr. Zahorodny. "It’s not just that they have a social impairment. We can put that information to use in helping to plan better education services and also other services for these kids as they get older."
Ms. Levy said that’s a major concern.
"What’s going to be coming to the forefront in the next few years as these children age are services after aging," she said, noting that the school district is responsible for students from ages 3 to 21. "What happens to kids that are not as high-functioning as my son or others as they age out of the schooling-age population?"
Ms. Kabir had the same question.
"What is going to happen when he is 21?" she said of her son. "That is probably every parent’s concern."
But in the case of Ms. Levy’s son, he was able to progress from tantrums to regular high school classes.
"My story may be (atypical), but my son is a college freshman right now," she said. "He’s my miracle child."
Luckily, she said services have increased since the time of his diagnosis.
"There were very few in fact, I don’t know if there were any autism programs in public schools at that time," she said. "It’s amazing how many more resources there are now and how much awareness there is now."
But there could always be more, she said.
"These kids are everywhere," she said. "When you have an awareness and a sensitivity, then you look differently on a child who may be having a tantrum in the park or may be having trouble interacting out in the neighborhood. You just have a heightened sensitivity that there might be something going on and you might understand better what that parent’s dealing with."
Ms. Kabir said Millstone River’s Buddy Program is helping to increase that understanding.
"They read books, play together, take part in a discussion group," she said, "which is very good for both sides."
Julia Mair-Pratt’s 11-year-old daughter Ellie is one of the regular education students who visits an autistic peer each week.
"The ability to connect with children that aren’t like herself I think it’s a tremendous opportunity," said Ms. Mair-Pratt. "I think what she has had an opportunity to do is instantly be more empathetic. To hear them talking about these children and sharing stories in a really positive way is really just amazing."
Ellie said that while dancing and playing with Legos with her buddy, she realized something.
"In their heads they might think different, they might act differently," she said, "but they still have the same feelings and stuff as us."
Ms. Kabir said she hopes such activities will lead to greater acceptance of children like her son.
"He’s different. So many people don’t understand," she said. "That’s what awareness is for."

