Dylan Davis, 13, lays on the floor as his 18-month-old sister, Brigid, plays in the living room of the family's Iowa City home. Press-Citizen / Matthew Holst
It's the end of a hot field trip day to F.W. Kent Park, and everyone can tell 13-year-old South East Junior High student Dylan Davis is ready to go home.
He can't say "I want to go home" because he is autistic and nonverbal. The vocal and physical cues are there, however.
His "mmm" sounds become angrier. He brings the heel of his hand to his chin, his frustration behavior.
Another bus pulls up to the playground with a different set of children. Dylan starts to head toward it. Two aides go to turn him around and distract him.
At the end of the day at home, however, there's a different Dylan, a calmer Dylan. He's smiling. He's giving kisses. He's spending time physically close to his family.
Autism is a developmental disability that affects the normal functioning of the brain, affecting social interaction and communication skills development. Autism is a spectrum disorder, meaning that it affects each person differently and at varying degrees. People with autism also might do repetitive movements or activities, be resistant to change in daily routines and have unusual responses to sensory experiences. According to a 2007 Centers for Disease Control report, one in 150 children in the United States has an autism spectrum disorder.
Dylan's stepmother, Lea Davis, said she doesn't understand why people say they are "so sorry" when they hear about Dylan.
Autism isn't the end of the world, she said. Dealing with Dylan is difficult at times, but not terrible, she said. What teen isn't difficult at times?
Dylan is one of four students in Michelle Stoppelmoor's Intensive Behavior Intervention class.
"(He is) really just like the typical teenager," Stoppelmoor said. "Likes to listen to music. Doesn't like to be around adults."
About a week and a half ago, Stoppelmoor and the other South East special education teachers took their students on the fourth field trip of the year, to F.W. Kent Park for some fishing and outside play time.
Dylan, like most of the kids, didn't really fish. He lay on the dock, Stoppelmoor said, sticking his hand in the water and letting it trickle off.
"Dylan should have been born a fish. He would have been a lot happier," she said.
Lea Davis said Dylan loves swimming. She was surprised to hear that he didn't try to jump in the lake during the field trip.
At the playground, he spends time on the swing, with his iPod shuffle going and headphones in his hands. He's not pumping his legs or tightly clutching the chains in his hands, but rocks gently back and forth.
In Stoppelmoor's class, the education is based on her four students' academic needs. The class is a lot more structured than most. Students do prevocational skill- building exercises, such as the assembly of toothbrush cases. They take trips to the grocery store and Wendy's to learn how to work with money in real-world situations. They do a "News 4 You" packet each week that helps them learn four vocabulary words and a recipe, measuring ingredients as a math skill.
In the classroom, between the time the field trip ended and the bus arrived to go to the Mayor's Youth Empowerment Program, or MYEP, Dylan drew lines back and forth on an Etch-A-Sketch until the entire screen was covered in black. Stoppelmoor sat next to him and gently touched the back of his neck.
"He likes to be lightly touched," she said. "I'll rub the back of his neck and he'll calm down."
He also did one of his other favorite activities, cutting paper into tiny squares. He took a sheet of paper, cut a strip almost all the way across so that it was still connected, and then cut squares off that strip. Last summer, when Stoppelmoor met him, she said he would fill a basket with the squares he cut before dumping it out. Now he goes and trashes the squares one page of paper at a time.
After school, Dylan goes to MYEP and meets with support staff Merrill Coleman. The two hop in Coleman's car and travel around town for an hour.
They go through the McDonald's drive-through to grab Dylan a double cheeseburger and fries. They stop at Mercer Park to eat, then swing and spin on the playground. They also work on other skills to interact in the community, such as going to City Carton Recycling and walking around downtown.
When he arrives home, Dylan spends 20 to 25 minutes in his room alone in what his parents say is his time to unwind.
He comes out and is ready to eat. His stepmom gives him a bowl of salsa and a bowl of chips. He takes one chip and uses it over and over again as a spoon for the salsa, only needing two or three chips to finish off the bowl of salsa. He follows it by drinking a whole glass of water in one long sip.
His younger sister, Brigid , is 18 months old.
"It's funny because Brigid and Dylan know the same (sign language) signs now," Lea Davis said. "They sit there and 'please' each other."
He knows the signs for more, please, bathroom and eat -- basic needs signs, his parents said. Usually, he signs when his parents or the people who work with him at school prompt him to, she said.
The difference between Dylan at school that day and at home is noticeable. He was irritable and showed his frustration at the end of the school day, but at home he's more relaxed.
"It's pretty rare that he's like that at home," Lea Davis said. "We don't put a lot of demands on him."
He stays in the kitchen and watches his stepmom cook dinner. Once the food is ready, he and his sister seem to be having an unspoken competition for who can eat more, what dad deems "the spaghetti Olympics." Dylan goes through about two and a half plates full of spaghetti. Both he and Brigid take food off Lea Davis' plate.
"Most of the time, they sort of ignore each other, but when they do (interact), they're really sweet," Lea Davis said.
Dylan, as is common with people with autism, doesn't initiate social contact with his sister, but if she comes over or their parents bring her over to him he likes it.
Seeing Brigid's development has been an interesting comparison for the Davis family.
"I'm used to other people's kids being able to talk, but not my kid being able to talk," Lea Davis said. "We've never had to watch what we say because Dylan never repeats anything we say. It's kind of a new habit to get into."
Dylan's lack of communication is a problem at times, such as when he is sick.
"There are a lot of times that he'll cry out of the blue," Lea Davis said. "It's really hard because there's nothing we can do to make him feel better."
Luckily, Dylan is an incredibly healthy kid, she said. When he sick, however, it's hard to know what is wrong with him.
"We've never known that he has a headache. I mean, the kid is 13 years old, I'm sure he's had headaches," Lea Davis said.
Medications he has taken to help with his autism, however, have played a huge role in Dylan's life.
Selective serotonin reuptake inhibitor medications, such as Prozac and Zoloft, which people with autism often are prescribed first, don't help Dylan. In fact, they made him worse, Lea Davis said.
"He was just all over the place," she said. Twice, he was charging through the house and smashed through a plate-glass window.
"It was getting to the point (his dad, Tad) was afraid of having him at home," Lea Davis said.
"Once he got to a certain age, the hyperactiveness wasn't fun anymore," Tad Davis said.
When Dylan was about 7 or 8 years old, they changed the type of medication he was on to an atypical antipsychotic prescription medication, Risperdal.
For him, it made a huge difference. For the first time, they were able to take Dylan to a movie and he sat through the entire thing, laughing at the funny parts and enjoying himself.
Once he hit puberty, however, the Risperdal no longer had the same effects. They tried Prozac again, what they now know was a horrible mistake and led to the worst couple months for the family. Now, he is back on a different atypical antipsychotic, Abilify, and things are better for the most part, she said.
Around Christmas of last year was the most challenging experiences with Dylan. He tore up things in his room and his clothes. He still doesn't have clothes in his room anymore; his parents bring him his outfit for the day each morning.
Additionally, the family went on a trip home to Alabama. Lea and Dylan were in a crowded, hectic shopping area when he took off running. He got frustrated and laid down in the middle of the street. It took the help of four complete strangers for Lea to get him up and back to the car.
"Dylan really needs more structure than what we can provide at home. That said, he's still a kid," she said.
During the rough patch, the family started looking for assisted living facilities for Dylan as an option instead of him living at home.
"We were really, really pleased when we started looking," she said.
Lea and Tad Davis found what they considered a good option for their son, but the funding didn't come through. There are only 50 to 60 state funding slots for people age 18 and younger for residential-based care, Lea Davis said. They couldn't do it without financial help because the care costs about $275 day.
"We were really devastated when we found this out," she said.
The only other option was Woodward State Hospital, but that's two hours away, his stepmom said.
"For me, it was just an incredibly painful experience," she said. "It's mixed in with feeling as a parent ... and feeling totally powerless."
Tad Davis said he knew when Dylan was about 2 years old that his son was autistic.
"They wouldn't diagnose him until he was 3," Tad Davis said.
His father knew, however, from seeing a segment on "20/20" about a girl with autism. She had some of the same qualities: hyperactivity, no visual contact, walking on the toes.
"I was already suspicious, but when I saw that, I knew," he said.
Tad and Lea had their first date on Dylan's sixth birthday. Dylan shot out of the house when someone opened the door.
"He was just beautiful," Lea Davis said.
"I think I actually fell in love with him before I fell in love with Tad. But not too much before," she said with a smile and laugh.
After meeting Dylan, Lea Davis became interested in autism research. She now studies the genetics of autism at the University of Iowa. A UI master of fine arts film student, Tad Davis has made several documentaries about Dylan, the main one titled, "Out of the Loop."
Dylan is 5 feet 8 inches tall and about 185 pounds, some of the weight caused by the medication affecting his appetite. He weighs more than his dad now, by about 15 pounds.
"Sometimes I think if he was a typical kid, I think he'd be a linebacker for the junior high team," Lea Davis said.