Feeling her way

As autism controversy grows, one little girl discovers different methods of learning in our world

It's 5:50 a.m. when Hannah Myles plods downstairs and discovers quite a mess in the living room.

The 8-year-old surveys the scene. The remotes on the coffee table, the pictures — who left them like that?

The rest of the family is still in bed, but Hannah doesn't let that stop her from getting to work.

First, the remotes. They aren't touching. They're supposed to be lined up next to each other with the VCR remote touching the television clicker. Hannah lines them up precisely.

Next, the pillows on the couch. One's in the middle of the couch and the other's leaning against the arm. Totally wrong.

Hannah fixes them, making the pillows stand straight up, one on each arm of the furniture.

Oh, and the picture — a family photo on the mantel. It's sitting at 45 degrees to the edge, not 90 degrees. Hannah reaches up and straightens the picture.

Ah.

Wearing nothing but her underwear bottoms, and with the light still dim in the room, Hannah feels content.

And it sounds like someone upstairs is stirring. Time for breakfast. Everything's right on schedule, just like it was yesterday.

 

Hannah's ritual begins the same way nearly every day.

She likes things a certain way: lights dim, clothes off, accessories organized. In fact, any variation causes quite a stir for the autistic Smith Elementary School student.

It's one of the quirks of her disability, and a good example of the mystery that surrounds one of the nation's fastest-growing diseases — one that has no known cause nor cure.

Why does Hannah need to straighten the remotes and reorganize the pillows? It's as much a mystery to her as medical experts.

The Centers for Disease Control and Prevention calls it "autism spectrum disorder" — a reflection of the wide range of effects it can have on people.

Some severely autistic children cannot speak nor process information. Then, on the other end, autistics with Asperger syndrome only suffer mild social anxiety.

There are a few constants: Autism typically appears during the first three years of life, and both severe and mild cases struggle with verbal and non-verbal communication. It's as though somewhere between their brains and their ears or eyes, the signals get scrambled. Textures can amplify, noises agitate.

"People with autism do not live by the rules of the world they were born into," said Chelley Cochoran, the autism coordinator for the West Aurora School District.

Hannah falls somewhere in the middle of that range. Right now, she can talk in very simple sentences. She constantly wears the smile of someone content with the thoughts in her head, yet it took her years to sit still for a haircut.

She's in school, but her potential isn't clear yet. Like most autistic children, there's still too many unknowns, which is why a puzzle piece has become the disability's symbol.

Like autism, the full picture isn't clear from studying an individual puzzle piece. And although every puzzle piece has a home, there are plenty of places it just won't fit. More and more autism advocates have started wearing the multicolored puzzle-pattern ribbons to raise awareness.

And yet, most people's singular knowledge about autism comes from Dustin Hoffman's character in the 1988 movie Rain Man. Hoffman portrayed an autistic savant, a man with the ability to remember large parts of the phone book, but unable to live on his own.

That character was just about all Hannah's mom Beth Ann Myles knew when a neurologist first used the "a" word.

 

It was a neurologist who first said Hannah was autistic. Other specialists had diagnosed a developmental disorder, but didn't go further.

As soon as she heard it, Beth Ann felt sick to her stomach, scared, guilty.

"It was a whole rush emotions, none of them good," she said.

It's not that Beth Ann and husband Dean didn't know something was wrong.

Around the time she turned 2, Hannah stopped talking like other kids. She misbehaved a little more than seemed normal. And she was only sleeping two or three hours a night.

The neurologist's diagnosis of autism was just day one of adjustment and education for the Myles family.

Sometimes Hannah "acted out." At family parties, Beth Ann and Dean tried to explain that Hannah wasn't being naughty; she was being autistic. She had no understanding of etiquette, no way to comprehend what behavior was appropriate.

Hannah's older brother, Thomas, often took the brunt of social immaturity. Although Hannah is three years younger than Thomas, she's almost his size. So once when Hannah took a swing at her pal "Bubba" (a speech-slurred way of saying "brother") it left a nasty scar.

"Until she had her medication, I was her punching bag," says Thomas. "I didn't know why she did it so I just cried."

But Thomas, an enthusiastic, friendly sixth-grader and video game whiz, took the abuse with wisdom beyond his years. He watched out for his sister, defended her. Somehow, at age 11, he knew his sister needed extra forgiveness, perhaps because his parents relied on Thomas to protect her.

"We told him you're going to have a lot of friends, but she will always be your best friend," Beth Ann says. "She will always love you."

Family bonds can be put to the test when you're a pre-teen and your little sister wanders through the house nearly naked in front of your friends. Not for Thomas.

"If they treat her like crud, they're out of the house for good," he says, matter-of-factly.

"You have to be real careful on who you choose as friends because some people don't understand," Beth Ann says. "I'd be lying if I didn't say I don't wonder what she'd be like without autism. But then she wouldn't be Hannah. Hannah is Hannah."

That conclusion took a little while. On day one, when guilt and Rain Man and worry were swirling, Beth Ann could only wrack her memory.

Did I jar the baby? Was there something I did during pregnancy? Is there autism in the family history? What caused this?

 

When Bernard Rimland brought his 2-year-old son to the doctor in 1958, the doctors had never seen such a case before. That's because at the time, little Mark Rimland was a one in 10,000 baby — a rare case of autism.

"When my son was diagnosed, you never heard of autism," said Rimland, who is now the director of the Autism Research Institute, based in San Diego. "Now you can't go anywhere without hearing about it."

Over the last 30 years, the number of autistic children has skyrocketed — although the reasons are not clear. According to the ARI, one of every 166 children born today are considered autistic — 60 times what it was when Mark Rimland was born.

Some people attribute the increase in autism cases to a new awareness — more people know about autism now, so they're more likely to spot it. Others believe that because the definition of autism has expanded, the population has grown.

Rimland, who served as the technical adviser on Rain Man, bristles at those theories.

"There's just no question about the increase; it is very real," he said. "And it is absolutely absurd to think something as serious as autism wouldn't be noticed by a parent."

Rimland is passionate when he talks about autism, but angry when speaking about what he believes has caused the epidemic. To him, it's no coincidence that the rise in autism started when more vaccines were being administered to children.

"The evidence is overwhelming," he said. "There's a lot of motivation for drug companies to lie, and they're certainly doing a lot of that."

A recent study by the Centers for Disease Control and Prevention concluded that of children who were vaccinated before age 3, there are only slightly more cases of autism. And they hesitate to connect even that small rise to shots.

It could be, the CDC speculated, children with autism are more likely than children without autism to have been vaccinated because parents want to get their kids enrolled in early preschool. The study concludes that autism is triggered by environmental and genetic factors.

Whatever the cause, more autistic students are showing up in schools. The need was great enough that at West Aurora Cochoran was made a full-time autism facilitator, separate from other special-education students, at the start of this school year.

And if the trend continues, schools across the country will have to find ways to design an educational future for these children.

 

Dean Myles has always dreamed of getting a Corvair — a small, sporty car from the '60s — his reward for a lifetime in law enforcement with the Itasca Police Department.

But when Hannah was diagnosed with autism, the car, the future, all became more of a question mark than an exclamation point. Could they afford to buy Dean's dream car? Sure. But that money could be spent on another evaluation for Hannah, another treatment.

"It's not giving up something," Beth Ann said. "It's making sacrifices. As a parent you make sacrifices; and with autism, you just make a few more."

What at first seemed like a hopeless situation has become a wonderful learning experience for everyone. Hannah has started taking horse-riding lessons in Maple Park, even winning ribbons in her age group.

And the family has adjusted. They still occasionally leave the remotes in the wrong spot, but they have found teachers who fight for, and love, their daughter. Slowly, with heavy emphasis on repetition and structure, Hannah has made great steps.

When she read her first book — about a dog who can hug — her mom almost cried.

"She's just come so far," Beth Ann said.

Dean and Beth Ann have goals for Hannah: They'd like to have her in mainstream classes by fifth grade and finished with high school by 21.

Beth Ann firmly believes that Hannah will be able to get a job someday and drive a car. The rest of their hopes, well, they're not different than other parents. They want Hannah to be able to take care of herself; they want her to be able to hold a job; they want her to be happy.

What form those goals will take isn't yet clear.

It's possible that Hannah will always live with them. At best, she might live in an apartment next door.

"Am I going to be 90 and she'll still live with me?" Dean said. "I don't know. Maybe I'll still get that Corvair, but we'll drive around with Hannah in the back. That's OK with me."

Thomas, though, has more practical ambitions for his sister. A few months ago, he taught her the finer points of whistling.

"Next time I'll teach her this," he says, as he puts his right hand under his left armpit and starts flapping his elbow.

Autistic or not, there are certain things little sisters need to learn. Just like any other kid.