Sunday, May 25, 2008

A brother’s story

Cristof Traudes describes his brother Erik’s struggle with Asperger’s, an enigmatic disorder that has challenged their family and Erik’s resolve.

* Editors note: Italicized text in this article represents recreated conversations. Also, Cristof Traudes learned March 14, 2008, that this 2007 story placed second nationally in Personality Profile Writing in the 48th William Randolph Hearst Foundation's Journalism Awards Program. Traudes works for a newspaper in Duluth, Minn.

I celebrated my 21st birthday last fall at a Tex-Mex restaurant north of downtown Columbia. The walls were mounted with “genuine” sombreros and large TVs tuned to ESPN. I was happy with the combination of friends who gathered — there were friends I played with in Marching Mizzou, friends from the journalism school, friends from high school.

And there was my brother, Erik, 24. He sat to my left, wearing the bright red Minnesota Twins T-shirt I had scored for him during my summer work there. It was pretty special — not every kid gets to have his big brother at his milestone birthday.

I spent a lot of the night talking to the people in my corner — my brother Erik; friends Mark, Tom, Buddy and Aaron. I turned to Buddy, an MU music student who’s been one of my best friends since our days at West Junior High School.

How’s it going? I asked. Classes and everything OK?

Yeah, Buddy said. Just the usual music school thing. Lots of practicing, lots of rehearsals. You?

It’s going well, I said. I —

Erik interrupted me midsentence.

Did you see that Georgia Tech is beating Virginia?!

Really? I said to him. Interesting. …

Neither team meant much to me.

I turned back to Buddy. I —

Whoa! Erik blurted out. Did you see the Twins’ score?

I glanced up at the TV. The Twins had lost another game that could’ve ensured them postseason play. Oh well.

I turned back to Buddy. I —

Did you — Erik again, jumping in from my left. I tried to ignore him.

— am doing well. The J-School —

Did you —

— is keeping me —

Whoa! Did you —

I never finished my conversation with Buddy. But that’s a given when Erik’s around.

It’s always been that way.

But it’s barely been a year since I understood why.

My brother has Asperger’s syndrome.

Two brothers

Erik and I both stand 5 feet 10 inches tall. We’re both relatively skinny, although he’s starting to develop a little gut. We’ve both worked at Schnucks grocery store as baggers and cashiers for more than four years, often on the same shift. And despite our three-year difference in age, we’re both seniors at MU, scheduled to graduate in May.

The similarities end there.

Erik excels at math. I get lost once the “pre” is dropped from “precalculus.”

Erik loves science fiction. I could do without the science.

Erik mellows out to the soothing sounds of Sarah McLachlan. Give me Dave Matthews Band.

And while I’m mostly indifferent about baseball and video games, Erik can — and will — talk your ear off about either.

He can rattle off the winningest manager of the St. Louis Cardinals (Red Schoendienst, followed closely by Tony LaRussa) and how many years it took to create the latest installment of the fighting game “Soul Calibur” (two).

He can tell you the year St. Louis was introduced to Major League Baseball (1882, with the creation of the St. Louis Brown Stockings) and the name, properly spelled, of the creator of the Super Mario Bros. franchise (Shigeru Miyamoto).

When my friends meet Erik, his rapid-fire knowledge first impresses, then baffles and, finally, annoys. But after trying to signal with yawns, frowns and turned heads that they’re ready to stop listening, he just keeps talking.

That’s usually the point when they come to me and ask why my brother is so weird. For years, I secretly asked myself the same question.

Now I can tell them he has Asperger’s syndrome, a “mild” neurological disorder in the same spectrum as autism. That puts Erik in fast-growing company; as many as one in 150 children in America suffer from some form of autism, according to a study released in February by the Centers for Disease Control.

What I don’t often tell friends is that Erik’s obsessions are just one characteristic of his condition. They don’t know how much he struggled in school despite his superior intelligence. They don’t know about the long nights of crying, or that his mysterious and stubborn behavior strained my family to a breaking point. They don’t know that we lived with this mystery for 23 years, not knowing what caused it and when — or if — it would end.

The world of psychology is almost as much in the dark about these aspects of Asperger’s. It acknowledged the disorder’s existence little more than a decade ago; research remains in the discovery phase.

Some things about Asperger’s are generally known. For example, its symptoms vary greatly from person to person. Some might have obsessive routines, or sensitivity to bright lights and loud sounds. Others have major motor-skill problems or are considered “little professors” because of a precocious formal speaking style.

Asperger’s is five times as likely to appear in males as it is in females. Like all forms of autism, it is being diagnosed at an increasing rate in both children and adults. It stands out because it’s a “high-functioning” disorder, usually not accompanied by problems with language development or similar learning skills.

The most universal aspect of Asperger’s, however, isn’t a scientific fact. Rather, it’s what makes its label as a “mild” disorder sadly ironic. It’s the social side: Most of those with Asperger’s have normal intelligence and verbal skills, but their fixation on select topics makes it hard for them to take part in the give-and-take of regular conversation.

As children, people with Asperger’s tend to get bullied. As adults, they often get labeled as weird and have trouble in the job market while they struggle at maintaining relationships.

Preschool

Two-year-old Erik had short, fine blond hair, brown eyes and soft, pale skin. His face was a miniature carbon of Dad’s. He laughed with his mouth wide open, exposing a tiny pair of buck teeth. People often told my parents how pretty he was.

In Mrs. Jacks’ and Mrs. Nichols’ preschool classroom in Charlotte, N.C., he usually sat alone in a corner, absorbed in puzzles or Legos. Parents of more unruly toddlers were in awe of Erik’s calmness and his ability to keep himself entertained.

Go play with Erik, they’d tell their kids.

But the same thing happened every time.

There’d be a few moments of mutual stares, then Erik would turn back to his toy.

Hi, some child would say, eager to play.

Hi, Erik would say back.

What are you doing?

A puzzle.

Oh.

And that was where it ended.

Erik might answer some direct question. But he wouldn’t ask anything in return. He wouldn’t move over to share his toys. So the other kids would walk away and join others to play house or to color together — anything that involved interaction.

Erik was never mean. He never acted unhappy. He was just different.

At that time — 1984 — Asperger’s was not yet a part of American psychologists’ lingo. Often, those who exhibited the symptoms were either diagnosed as having a high-functioning form of autism or some vague learning disorder.

But my parents weren’t too concerned about Erik’s social isolation yet; they thought he would grow out of it.

The beginning

Our parents, Herman and Beth Traudes, had been married three years when their first son was born. They had been introduced by a mutual friend in Lexington, Ky., when Herman was stationed there for IBM and Beth was working for the county health department. Now they were living in a skinny traditional Dutch home along a canal in the heart of Herman’s native Amsterdam.

Beth was a self-proclaimed rebel and feminist who came of age in Columbia in the 1960s. When she was younger, children weren’t part of the plan. But once she was pregnant, she insisted on giving birth at home. When she went into labor on the eve of Aug. 29, 1982, the maroon sleeper-sofa in the living room was folded open and made ready. A flurry of phone calls brought two midwives and one of Herman’s sisters to the quiet house at Westlandgracht 185.

Most of the birth went off without a hitch. Except for the contractions. They were worse than expected and focused in the small of Beth’s back.

Herman got her through the pain, massaging her back until his hand was raw.

“The biggest problem of the night was that the neighbor woman had made chicken for Herman that was full of garlic,” my mother told me recently. “Dad and I were doing breathing exercises together; he was just giving me clouds of garlic.”

In the wee hours of the next morning, she gave birth to a pretty 6-pound baby boy with a dark mop of hair.

“It was extremely cool,” Mom said. “It ranks right up there as one of the happiest moments of my life.”

Primary school

Erik started primary school with everyone else. Over the years he went to birthday parties, movies and other social gatherings. He played after-school sports. But he didn’t fit in anywhere.

He knew it then, and he remembers it now.

“I don’t feel disabled,” he said. “I don’t feel like I’m weird. I just know that from everyone’s reactions.”

The “reactions” started early in primary school.

Erik was happy in his own bubble, a fantasy world where he was the star of his own TV station. He controlled the programming and, come recess, he’d rush outside and act out whatever show was on. Sometimes he was Batman. Other times, he was the 10th Teenage Mutant Ninja Turtle. (In his mind, he’d already created turtles five through nine.)

Mom remembers being called to school from time to time to observe his actions. She’d see him with his arms stretched out wide, a big grin lining his face while he ran along the playground’s perimeter. What she didn’t see was him playing with other children — because it rarely happened.

When it did, it wasn’t pretty.

One time, Erik was running along the fence when some classmates called him over. One of the boys held a piece of toast out to Erik. The others smirked.

Erik was excited by the attention. Had he been more tuned in he might have noticed that something was off. He bit into the toast.

The other boys howled.

Earlier, they all had spit on the toast and plotted to make a fool of Erik. And now the freak was eating their spit.

Bullying is a side-product that many Asperger’s children face; because they misread social cues, they are easy prey.

“Social things are so complex,” said Julie Donnelly, who heads Columbia-based Autism Support Services and has an adult son with Asperger’s. “We take (understanding them) for granted.”

If being an outcast at school wasn’t enough, Erik was also the worst player on his extracurricular soccer team — or certainly the most confused.

“He didn’t do anything,” my dad said, remembering the embarrassing Saturday mornings he spent on the sidelines. “He just stood on the field and watched the ball. He’d say, ‘Guys, there it goes.’ He just didn’t get it.”

His teammates would make their annoyance clear, and Erik would go home humiliated.

It was then that he probably started developing the depression he was diagnosed with in high school and still battles today. He was 8.

Because Asperger’s doesn’t affect intelligence, those with the disorder often understand the severity of the teasing they receive. Their mental block, however, prevents them from changing.

“The toll of meanness is tremendous,” said Nancy Minshew, director of the Autism Research Project at the University of Pittsburgh. “You know the saying, ‘sticks and stones may break my bones, but words can’t hurt me’?

“Not true.”

Home life

When Erik was 9 and I was 6, we lived in Castricum, the Netherlands, the town Erik and I still refer to as the place we grew up. It was a quaint Dutch coastal village, with traditional brick streets and open markets plus butchers and bakers included. Our house was red brick topped by an orange tile roof and looked like something out of an idyllic Dutch tourism book.

I doubt we knew it then, but our family was on the verge of falling apart.

Mom stayed home then, taking care of us and the house. Dad worked 10-hour days at IBM, feeling stuck in a managerial job he never really wanted. Every morning before Erik and I headed off to primary school, Mom would make our breakfast and Dad’s lunch.

While Mom got our cereal or toast with chocolate sprinkles ready, I’d get dressed in my second-floor room. A floor above, in Erik’s room, the drama would start.

Erik, get dressed! I’d hear my mother yell up the stairs. Erik, take 20 less minutes on your shower!

Erik, brush your teeth! And — again — Erik, get dressed!

Despite her pleas, most mornings found Erik curled up in his room, reading a video game magazine or staring off into space.

I hated the yelling, so I’d hear one order and follow it. (That stuck with me for life — I’ve often been called mature for my age, probably from watching my parents give the same orders over and over. Or maybe from not wanting to add to the chaos.)

“It was a really, really tough time,” Mom told me recently.

One exhausting morning after another, after we were finally out the door, she would sink into a living room couch, turn on the TV and try to forget what was going on around her. She’d try to forget her husband’s disaffection with a job he hated. She’d try to forget that she was thousands of miles from her parents. And she’d try to forget that she had a son who didn’t seem to be learning any of the practical aspects of life.

She said she considered leaving Dad and going back home to Missouri; she loved her husband but thought her son might be better off in the United States and would benefit from a bigger family support system. But Herman would never let her leave the Netherlands with the kids, she thought. She, too, was stuck.

That was the year my parents sent Erik to his first psychologist. They didn’t learn then that he had Asperger’s; the disorder hadn’t been identified yet. But they did learn that he needed special attention, and that it wasn’t their parenting that was at fault. They received tips, such as breaking down activities into smaller steps, on how to help him learn. “What we learned was we could not expect Erik to do what other children were doing at his age,” Mom said. “We had to meet him where he was and where his needs were. When we started doing that, when we stopped putting demands on him, the whole atmosphere in the house improved tremendously.”

It saved the marriage.

They were lucky.

Donnelly, of Columbia’s Autism Support Services, said that although more is known every day about Asperger’s, parents are often still left without much help.

“They’re forced to learn a lot themselves,” Donnelly said. “There’s a lot of need for information.”

Like twins

For all the trauma, I remember the early years as good years for Erik and me. We were more like twins than brothers.

He was 11 and I was 8 when we invented the future of video games: the Super Game Boy. Well, it was really Erik’s idea. He was the one who was always studying Nintendo.

The Super Game Boy would be a total upgrade — way cooler than the 8-bit monographic system that ruled handheld gaming at the time: Four more action buttons, a full-color screen and high-energy games.

During a creative burst one rainy afternoon, Erik and I bolted into my room and dug into my supply of paper and colored pencils. I carefully sketched the Super Game Boy. “This is it,” I said, showing off my drawing. “Cool,” Erik said, taking a break from his part of the production: the games.

He concocted the SGB version of “Street Fighter 2” and an SGB “Super Mario Bros.” They were just drawings of game cartridges, but to us, they came alive. We put the paper games into our paper

continued from page 11A

Super Game Boy, and voila! We played for hours.

It would take at least another four years before we started to pull apart. But it wasn’t because Erik had become a teenager with better things to do than hang with his baby brother. It was because I had outgrown him.

I wasn’t proud of that fact then. I’m still not.

High school

An IQ test administered by the MU Assessment and Consultation Clinic in 2006 placed Erik in the 99th percentile compared to others in his age group. Still, school was never easy for him.

We had moved to Columbia a

year earlier, in 1998, to be closer to Mom’s family. Erik and I had to leave our Dutch roots behind and adopt American culture. But I was mostly excited. I could refresh my image, make it whatever I wanted it to be. It would be a time for reinvention.

For Erik, there was no reinvention. Just recurrence.

On the surface, Hickman High School was refreshing for him. As one of 2,000-plus students, he found it easier to blend into the background there, which enabled him to stop being a target for bullies. He also found people who shared his passion for the fantasy card game “Magic: The Gathering.” Playing cards masked his social awkwardness.

But the high of having friends at school was a stark contrast to the despair he felt at home. As with my parents’ shouts up the stairs back in Castricum, I was a silent witness to that despair.

Erik and I had adjacent rooms in our traditional 1930s red-brick home in Columbia’s Old Southwest neighborhood. But more and more, we were less and less alike.

My room was tiny. My neatly made twin-size bed covered more than a third of the floor. Organizing became a strategic challenge. Dad bolted shelves to the green walls. A hutch added space to my skinny desk; trinkets, photos and issues of Rolling Stone were arranged inside with care. There was minimal decoration. My one poster — a massive 5-by-7-footer of the Beastie Boys — demanded total attention.

Erik’s walls were green, too. But his were plastered with posters: Yoshi, Mario, Luigi — all centerfold regulars in Nintendo Power magazine. His room was much larger, but that didn’t mean it was easier to maneuver. His double bed was rarely made. His three bookcases were stuffed with “Star Trek” fan fiction, “Hardy Boys” novels and classic American literature. His large computer desk was littered with dirty dishes and silverware. He would have had space to spare had it not been for a 2-inch thick sea of school papers and handouts that blanketed the floor.

Lying in my tiny, neat room — separated from my brother by one wall — I listened to Erik’s reality and realized I was becoming the older brother.

The tears usually started around 11 p.m. or midnight. Mom would come from down the hallway, the hardwood floor creaking under her feet.

What’s wrong? she’d ask.

I just — I just — can’t, you know, I’d hear Erik mumble. Sniffles would interrupt and garble his words. His unfinished homework would lie on his cluttered desk like an accusation. I can’t.

Sure you can, my mom would urge.

I just — I just — I ....

He explained it to me recently, the difficulty he has with schoolwork. His mind wants to start wandering as soon as he sits down. Once he finally gets focused, it takes only the smallest snag, whether it’s a question that’s too hard or a little worry that his essay won’t be the best in the class, to set his mind off again. He’d hit snag after snag until, around midnight, he’d realize he wouldn’t be able to finish the assignment. And that bothered him, because he’d always considered himself a prime student.

“I never have been able to effectively sit down and just do homework,” he said. “… I can write well. I’m a good writer. I just can’t sit down and do it.”

Many with Asperger’s have a similar experience.

“They want people to think they are really intelligent,” said Pittsburgh University’s Minshew. “They don’t want to be seen as failures.”

The problem can be compounded in the classroom. While most teachers know how to deal with students who don’t want to do homework, they aren’t always as prepared to deal with those who want to but can’t because of a mental block.

Donnelly, who works part time as a consultant for Columbia Public Schools, said some teachers take it personally when students who test high for intelligence seem to blow off their homework.

“Teachers (of students with Asperger’s) are always saying, ‘He’s rude and disrespectful,’” Donnelly said. “They need more understanding.”

For me, Erik’s educational lapses created a dark understanding: I would eclipse my older brother — the older brother whose fantasy world I once thrived in, the older brother I grew up wanting to be like.

Hearing him cry through the wall was also the first time I felt complete empathy for him.

The second time was when he flunked out of MU.

College

Erik walked across the stage of the Hearnes Center on June 3, 2000, wearing the bright purple gown and mortarboard of Hickman High. He flashed the wide-open grin of his childhood.

“I was really happy,” he told me. “I knew I was going to be going to college. It was going to kick ass and I was going to be out in four years.”

Statistics were against him. Deborah Wright, clinic director at the MU Assessment and Consultation Clinic, said many students with Asperger’s syndrome take eight to nine years to finish college. Others drop out entirely.

Erik started at MU as a computer science major intending to program his own video games one day. He moved into a dormitory. He and his roommate had little in common and barely talked.

It was one of the happiest times of his life.

He could play video games without getting so absorbed in them that his schoolwork faltered. His depression was receding, despite having little social interaction. At fall’s end, his grade-point average was 3.579 out of a possible 4.

Spring semester was different.

Erik was still happy. He was making a slew of new friends. All of them were deeply interested in video games and seemed to spend all of their time playing them — just as Erik wanted to do. He even started dating.

It was a social high point for the former boy in the corner.

But Erik’s mind was where it had always been. While he thought his friends played video games 24/7, they were able to set them aside for the two to three hours they needed to do homework. When time came for Erik to do the same, the added social distractions made him forget his priorities.

His grade point plunged to 1.136. Seven months later, it was 0.900.

MU booted him.

He moved back home. He worked part time at the grocery store. He lost his pride, his joy and his hope. He took a deep plunge back into depression. The former nights spent in anguish about high school homework were nothing compared to these months worrying about his future.

“They say you can accomplish whatever you set your mind to,” Erik said to me recently, eyebrows tightened together. “Setting my mind to it isn’t enough. You also have to set effort to it. But when I hit a snag, that was it.”

Dad

Predominant evidence shows Asperger’s is a hereditary disorder. My father has always quietly felt responsible for Erik’s differences.

1 comment:

WeblogLearner said...

i do hope the situation improves soon then.. the same is tru for those all over the world.