As understanding of autism increases, so does the number of children diagnosed

/ 20 May 2012 / jennifer

Jana Hollingsworth, Duluth News Tribune, May 20, 2012 –

Autism — which affects the ability to communicate and interact with others to varying degrees — is a hot topic, with Hollywood celebrities publicizing their children’s diagnoses, and the HBO movie “Temple Grandin” launching its real-life subject onto the national speaking circuit.

When Peg Ferguson started work as an autism teacher for the Duluth school district in the late 1980s, she was one of three who did that work. Today, with a smaller school population overall, there are 12 autism classrooms and teachers from kindergarten through 12th grade.

In 2001, 63 students in the Duluth school district were diagnosed with an autism disorder. This year, there are 162.

“It’s been a steady increase,” said Ferguson, now the district autism resource specialist. “We’ve gotten better at identifying kids.”

Autism — which affects the ability to communicate and interact with others to varying degrees — is a hot topic, with Hollywood celebrities publicizing their children’s diagnoses, and the HBO movie “Temple Grandin” launching its real-life subject onto the national speaking circuit. Grandin spoke in February to a sold-out College of St. Scholastica audience in Duluth.

Still, the Centers for Disease Control and Prevention shocked many in March when it came out with data showing the proportion of 8-year-olds in the U.S. with an autism disorder climbing to 1 in 88 children, from 1 in 110 children two years earlier.

“At this point, everyone knows someone with autism,” said Dena Filipovich, who has a second-grader with autism at Laura MacArthur Elementary School. “People are wondering, ‘What is it?’ Which is good, because it means help for children.”

The more people talk about it, said Filipovich, who is treasurer of the Autism Association of Northern Minnesota, the higher the chance that money goes to research to study the various disorders, which have no known cause or cure.

“The research money is not there,” she said. “We’re one of the highest-diagnosed childhood disorders and it’s not getting its fair share of funding because it’s not a fatal disease.”

As diagnoses increase, Ferguson said, so does confusion. That’s why someone like Temple Grandin, an animal science professor at Colorado State University, has been so helpful, she said.

“Temple Grandin is so well-known and articulate,” Ferguson said. “The changes in her have been so neat. People want to hear it first-hand from someone who has gone through it because some can’t articulate it.”

Teachers opened their classroom doors and parents and children shared their experiences with the News Tribune recently with the aim of increasing public understanding of what it means to be autistic, and how it is to teach children at widely varying places on the autism spectrum.

Learning social behavior

The kids in Valerie Stortz’s grades 2-5 autism classroom at Laura MacArthur Elementary spent time one recent morning coloring pictures of watermelons the precise shades of red and green.

In the grades K-5 autism classroom next door, teacher Stephanie Twardowski and her paraprofessionals had worked the day before amid tantrums and loud disruptions to get students focused on activities like stacking foam shapes onto pegs.

One classroom serves higher-functioning children, the other lower-functioning. The difference illustrates the challenge of trying to define any single approach to teaching children with the developmental disorder.

Autism is an umbrella that encompasses several disorders or disabilities. Some kids have several things going on at once: compulsive behaviors, sensory disorders and an inability to speak. Some are simply socially impaired: They can’t read body language and don’t understand social cues.

“They see things very black and white,” Twardowski said. “They can be very blunt. It’s because they don’t understand that there is a nicer way to put it, or more socially appropriate way of doing something. They are not trying to be rude.”

Some with autism have behaviors that restrict functioning, Stortz said, such as hand-flapping, smelling things or other repetitive actions. Teachers help those students replace such behaviors with things like jumping on a trampoline, listening to calming music on headphones, practicing yoga and smelling scratch-and-sniff stickers.

“We do role-playing, and teach appropriate responses so they know what to say back,” Stortz said. “Sometimes they never understand the why, but they need to know the what.”

For example, when second-grader Brentt Numbers met two visitors to Stortz’s classroom, he immediately stepped very close to each and showered them with compliments: He liked a camera, shoes and glasses, he said. “Can I feel your skin?” and “Do you like my shirt?” were his questions.

Brentt has been taught that compliments are good manners, Stortz said, but he goes through “a litany” of them because his boundaries are different.

Routine is very important to many students with autism, both teachers said, and it can be stressful if routines aren’t followed.

In Twardowski’s classroom, a couple of the eight students don’t speak and she uses sign language to communicate. Most function at a lower level than those in Stortz’s class, and things like paper-shredding, simple computer games and can-crushing help the kids focus when they struggle with learning activities.

Six-year-old Rayne Okeson was meticulous on a recent day in class when he laid out colored shapes in a perfect, coordinated system. Then he placed each on a peg in the same order. Finished, he took his shoe off and put it on the table.

‘Society needs to prepare’

Lilly Filipovich was diagnosed with autism at 18 months and is now 8. She moved to the higher-functioning class last year at Laura MacArthur when she learned to handle her anxiety in a better way, her mom said. Since then, she’s gone from knowing 17 words by sight to 93.

Her days include things like reading and word exercises, physical education in the gym, yoga and earned iPad time for completing activities. She and other students with autism also spend varying amounts of time in mainstream class.

“She is going to have more challenges as she gets older,” Dena Filipovich said. “Right now she has quite a bit of support,” but she knows that support wanes as children grow up.

“As she gets older it will be hard to find a skill for her, a career,” she said. “The support system gets different. She’s got a long road ahead.”

And Lilly is just one of a giant population that will need housing and work as they age out of school.

“Society needs to prepare for that,” Filipovich said. “It’s going to be a boom.”

Weak social filter

Denfeld junior Jacob Guldner is preparing for a career after high school. Guldner, who is autistic, has an after-school job working at an auto-body shop. He’s enrolled in the automotive program at Denfeld, with plans to take Lake Superior College classes while still in high school next year.

He doesn’t expect a hard time finding a job, and he knows he doesn’t have to disclose his autism.

“Some are wizards and will find niches,” said Lynn Fena, a licensed clinical social worker for the Duluth school district. But higher-functioning autistic people can have difficulty keeping a job, because of a lack of social skills, she said.

“Avoiding people and annoying people would be the biggest problems,” she said. “We work a lot on social situations to build that understanding.”

Guldner has a pervasive developmental disorder and has trouble with his social filter, he said.

“I have a very weak social filter,” he said. “I know that it’s wrong; I am inappropriate at the wrong times.”

Two of his classmates, who also have autism, spoke up and told him that he’s gotten better about controlling it this year.

Denfeld senior Matt Morschauser has passions for cooking and for music, and he hopes to work in the culinary arts and as a DJ after high school. He struggles with obsessive-compulsive and attention deficit-hyperactivity disorders, he said, and works to keep those under control at school. One way to do that is sweeping the floors, he said.

“I’ve learned that you should never let your autism hold you back,” he said. “Don’t feel hindered by your disability; let it empower you.”

Standing up for themselves

Denfeld and East high school students with autism are part of an Arc Northland program this year that helps them explore leadership, self-advocacy and employment and volunteer opportunities in Duluth. The students have met with Mayor Don Ness and traveled to the state Capitol to speak with lawmakers.

One important issue was bullying, commonly directed toward kids with autism.

Guldner said he’s been bullied in the past but it decreases when would-be bullies find out he has autism. For the most part, Denfeld students Matt Finch, Guldner and Morschauser said they are left alone.

“To know if I have autism, you have to know me well,” said Finch, a junior who hopes to become a biologist.

People with Asperger’s syndrome, a disorder characterized by awkwardness with social interaction, often get bullied the most, said Trudie Hughes, coordinator of the autism certification program and an associate professor in education at the University of Minnesota Duluth.

“They are quirky kids,” she said. “They are often the brunt of jokes. They are very vulnerable. If somebody says, ‘Do something’ to be accepted, they will do it. They often get set up.”

Those same kids are often experts in a certain area and will know every answer in class, she said, and they will go on and on about it.

Communication problems can occur when students with autism take literally the melodramatic statements of other teens — “My mom’s going to kill me,” or “I hate that class.”

The nuances of hyperbole are lost on the kids with autism, said Mike Descombaz, an autism spectrum disorder teacher at Denfeld.

“The world of all of that is pretty difficult,” Descombaz said. “You don’t naturally come by understanding the way other kids do.”

One thing Finch wants to clear up, he said, is the notion that people with autism are in any way inferior.

“This world would be so boring if everyone was the same,” he said.