Washington Mills sixth-graders were gathered around Arnold Karklis, who was holding up a manila envelope. “We have a secret message,” he told the students. He explained how they should divide into pairs and play charades, one student trying to communicate the message to the other through gestures. But these messages were not book titles or catch phrases, they were the casual messages that we use to get through our day, “I have a headache” or “I’d like a piece of pizza,” seemingly inconsequential, until you cannot communicate them. Karklis was trying to help the elementary school students understand what it is like to live with autism, the frustration that accompanies living every day with an envelope stuffed with secret messages.
“Its confounding to have to live without language,” said Karklis, the parent of a six year old with autism, “A lot of elemental signs and gestures tend to be missing from people who use language a lot… A lot of [the students] even have trouble indicating themselves – or understanding when someone else is.”
Karklis said his son does not speak much, but can name things and has good receptive language. He sometimes comes home from school and spells out the names of his classmates on the fridge. His son uses “instrumental gestures.” He would pull Karklis and his wife into another room “so we’d be present when he was playing. That’s all he wanted.” The isolating tendencies of autism can create insecurity that leads to a need for attention. Fortunately, says Karklis, the children in his son’s Kindergarten class are “incredibly sweet and open to him… its touching how sweet they are.”
Washington Mills houses an Autism unit, so students at the school interact with their autistic classmates every day. This two-day training, called “Understanding Friends,” attempted to give students an I insight into the feelings that lie behind autistic students’ behavior. Beth Jarvis says she started the activity last year “for selfish reasons. I started it because I have a child with autism who I felt was mistreated by his classmates [at another school], bullied and ostracized.”
“I thought it was a huge success,” she said of the first program, held last year. “When you have awareness you have tolerance.” She received phone calls from people in other counties and even other states. Some of the volunteers helping this year are parents from other schools who wanted to start a program at their own schools.
There is no shortage of people affected by autism. Data from some studies suggests up to one out of 166 children have an autism spectrum disorder. It is, Jarvis said, an “epidemic. The numbers are increasing. If you don’t know someone with autism, you will.” Autism, a poorly understood neurodevelopmental disorder (or “different wiring of the brain” as Jarvis put it), is called a spectrum disorder because it manifests itself differently in nearly every person affected by it. People with autism can be high or low functioning, and can act out or be withdrawn. “If you know someone with autism, you know one person with autism,” Jarvis said, quoting a common explanation of the syndrome, “because of the difference in presentation in each child.”
“UNDERSTANDING FRIENDS” was set up as five stations in the gym, all manned by volunteers from the community. Besides the communication station, there were two visual stations, one with magic eye posters that forced students to shift their eye-focus to see the whole picture, and another at which students wore goggles that were almost completely taped over, then had to read, write, and watch a balance beam using only the disorienting tidbits of visions provided by holes in the tape. At the fine motor skills station, students wore gardening gloves and had to do things like button a shirt or string beads on a thread. At the perceptual and sensory station, students experienced heightened awareness on all their senses: through activities like being rubbed by a loofah and sniffing garlic. Jarvis said that many autistic people experience sense things in an extreme way. Those sensitive to touch can find the tags on shirts and the lines on socks painfully irritating.
Jarvis hopes these activities will change how the students think about autism. “If they understand what is behind that [behavior] they are more likely to accept it,” she said. “We’re not asking you to like every child, just respect every child.
Carol Hagen is the mother of two Washington Mills students. Her oldest son is autistic. She is explaining the magic eye poster station. “A lot of people with autism don’t see the big picture,” she says. “They only see little parts of the world.” She said later that some of the students can become quite frustrated with the tasks. “I’ve used this as a teaching moment. Children with autism act out when they’re frustrated.”
Jeremy Keys, a Physical Education teacher, was overseeing the students as they moved from station to station in the gym. “The kids have really embraced this autism experience,” he said. “They’ve always been kind of nurturing towards autistic kids. They don’t laugh and try to help as much as possible.”
Sixth-grad student Nikki Stewart had just completed the sensory exercise. She said it had affected how she would approach classmates with autism. “I wouldn’t touch them because they feel like they’ll be scratched and be afraid of me. It’s a terrifying feeling. Would you want someone to be scratching you all day? I would treat them the same way but not touch them.”
After walking hesitantly across the balance beam with her taped goggles, fifth-grade student Keiko Davenport confided, “It was hard. It gave me a headache trying to look really hard.”
Elizabeth Portaluppi agreed. “It was kind of confusing. It was distracting. You’d see something from one of the tiny holes and focus on that instead of the beam.” She imagined what it would like to see like that all the time. “It would be frustrating. You’d need a lot of friends to be with you.”
Julian Pelkey was succinct. “It felt like everything was impossible.”