Autism Awareness: Parents discuss children’s challenges

By Jeanne Starmack

Parents discuss children’s challenges

There could be more to that child’s tantrum than you realize.

NEW CASTLE, Pa. — Alex Seman, 3, doesn’t have much of a way with words.

“He’s really social and hugs people,” said his mother, Cathy Seman, of Wampum. “But his communication isn’t good.”

Austin Beatrice, 5, doesn’t talk at all and has trouble interacting with other kids.

He’s also a happy boy who laughs a lot, said his mother, Julie Beatrice, of New Castle.

Four-year-old McKenzie Agnew can’t go into some stores. Going into Wal-Mart doesn’t bother her, because the ceilings are high. But in smaller stores, the fluorescent lights are closer overhead.

She just can’t tolerate them, said her father, Josh Collingwood of Union Township.

That’s perfectly normal, though — once you understand that hypersensitivity to environmental stimulants is common in people who have her disorder.

She has the pervasive developmental disorder autism, as does Austin. Alex has pervasive developmental disorder, not otherwise specified, which appears to have stemmed from a genetic disease. It’s similar to autism.

Seman; Collingwood and McKenzie’s mother, Rochelle Bissell; and Beatrice sat together on a recent morning in the office of Sue Crossley, director of autism services and program development for Vocational Psychological Services.

In the cozy room on the top floor of a converted three-story Tudor house on North Street in New Castle, they talked about the challenges their children face.

A casual observer might be disturbed by the behavior of a child who has autism or a disorder like it. People just need to understand, though, that there could be more to that behavior than what’s on the surface, said Collingwood.

That child screaming in the store might look like she’s having a tantrum when she’s really just processing information about the fluorescent lights differently. Research has shown that people with autism are bothered by the lights’ high-frequency buzzing “and they flash real fast,” Collingwood said.

It can be a guessing game sometimes, trying to figure out what they’re thinking.

A crying child can usually tell his mother if he’s sick, but Alex can’t tell Seman if he has a stomachache, she pointed out.

Staff led the children in a play group across the hall as the parents talked about what they wish more people realized about autism and similar disorders.

Vocational & Psychological Services wants a more educated community, too. So it’s teaming with Lawrence County Head Start, a federally funded preschool and day care program, to help more people understand what it’s like for people with autism and their families.

A carnival, planned by the private agency’s staffers, is set for 1 to 4 p.m. Saturday at Head Start, 301 E. Long Ave. in New Castle.

In a conference room Wednesday on the first floor of the Tudor, Ashley Masters, a clinical assistant, and Billie Jo Bober, an intern from Penn State, explained that the carnival will be the agencies’ second annual awareness event. It’s timed for April, which is Autism Awareness Month.

Head Start will use the event to offer registration for its program, they said.

Masters and Bober have been diligently beating the bushes to raise money and prizes for the carnival, said Crossley. Businesses in the community, they said, have been generous. Masters and Bober sent around 800 fliers to schools, day care centers and other organizations, and they’re hoping for a good turnout.

More people are being diagnosed these days with autism — one in 150. In the 1960s, it was about one in every 10,000. It wasn’t uncommon, Crossley said, for people with autism to reach adulthood with no diagnosis.

Researchers aren’t sure what causes the disorder, Crossley said. The rise in the number of people with it, she said, could be a combination of more people having it and more people being diagnosed than before.

The carnival, she said, is a family event that’s open to anyone with a desire to learn more about people on what is called the autism spectrum. On the spectrum, there are people with different degrees of social and communication deficits, she said. The range extends from people who are profoundly affected and have no verbal skills to people with Asperger’s Syndrome, a mild form of autism.

The way they process information is different. Most people can pick up cues about social interaction and communication or learn through trial and error, Crossley said. A person with autism, though, has to be taught the cues.

Autism can cause an obsession with a certain interest, she said. Austin, said his mother, “was real obsessed with strings.”

They can be hypersensitive, Crossley said. Background noises that most of us would barely notice, such as a humming air conditioner, might bother them.

It’s how they deal with their frustration or stress, said Crossley, that often nets them negative reactions in society.

We all self-regulate — which means indulging in habits that help us deal with stress. We twirl our hair or bite our nails. People with autism, Crossley said, often self-regulate in ways that draw attention to themselves.

Behavior specialists who deal with them, she said, don’t try to eliminate the natural need they have to find a way to deal with anxiety. Instead, she said: “We give them alternative ways to deal with it.”

An educated public that understands signs of autism is important — people should remember, the parents said, that these are children and they have feelings.

“McKenzie is very aware of what you say in front of her,” said Bissell.

Education can also help people realize when they need to get help for their own children, said Beatrice. The earlier a child gets therapy, the better, she pointed out.

McKenzie’s diagnosis wasn’t a big surprise to Bissell, she said, because at 3, the child still wasn’t talking. She made no eye contact and was not socializing with her older brother. She would twirl pens constantly. She and Collingwood researched those symptoms, she said, and they suspected autism.

The diagnosis “was an answer,” she said, that allowed the couple to get McKenzie the help she needed.

Across the hall the children played with blocks, read books and worked on puzzles. Their parents, meanwhile, talked about their hopes for the future.

McKenzie has come far since she began therapy. “She was completely nonverbal,” said Bissell. “She stayed in her room. Now, she’s very loving. She give hugs.” She’s also starting to talk.

Alex, whose genetic disease caused tubelike tumors to grow in his brain, had seizures at 6 months old. He was diagnosed and had intervention very early.

Now, his mother said, his communications skills come and go. “But cognitively, he’s getting better. He follows directions better.”

Austin is learning sign language and will go to an autism support kindergarten in the fall, said his mother. There are three in the county — two in the New Wilmington school district and one in Union schools, the parents said.

Austin has learned to point to pictures to tell people what he wants, Beatrice said. “We hope he’ll eventually learn to speak,” she said.

What is the ultimate goal for Alex, McKenzie and Austin? Mainstreaming. “Our goal is to mainstream them in a regular classroom,” said Masters.

With timely therapy and a community that better understands people with autism, parents have hope that goal is in reach.