This article first appeared in the St. Louis Beacon, June 22, 2009 - Every parent at the May 2 graduation at MacMurray College in Jacksonville, Ill., was beaming, but none more so than Dick and Jan Hellwege. For many years, they weren't sure if the idea of their daughter Emily earning a college diploma was a possibility -- or just a wish.
Listening for the bagpipers, which he knew signaled the processional, Dick waited with his camera outside the school chapel to capture the first glimpse of Emily, 23, in her cap and gown. After hearing the first few notes of "Scotland the Brave," he looked at Emily's adviser standing beside him, and the tears flowed.
"I just lost it. I kind of sounded like a little kid," Dick remembered.
After the ceremony, teachers and administrators made a beeline to Emily and her parents. "They couldn't wait to talk to us about how proud they were," Dick said.
Their immense pride -- and that of the Hellwege family -- stemmed from a lifetime of struggle that, during Emily's senior year in high school, was finally given a name: Asperger's.
MORE THAN JUST SHYNESS
The Hellweges' first and only child experienced some developmental delays, for instance, in walking at the upper end of the normal range, 16 months. As a preschooler, she was more comfortable entertaining herself than playing with others. In elementary school, Emily had a few friends but when she moved to a new district in fifth grade, it became difficult to fit in.
"It was hard for me because I knew none of the kids," said Emily, her head characteristically tilted down shyly and her clear green eyes gazing upward.
What her parents thought of as shyness persisted into middle school and she was left out when her classmates had parties or got together after school.
"The usual girl stuff," Emily explained, her brown ponytail bobbing.
Jan, who'd been a social butterfly in her youth, couldn't understand why Emily wasn't doing more to get involved with her classmates.
"I would sometimes try and push her into situations, not realizing that she didn't care. 'Why don't you want me to be calling people up to do stuff?' I would ask her," Jan said.
But Emily did have some close relationships. "With her drama teacher, family and consumer science teacher, social studies teacher and her adviser," Dick explained. "They all came to her graduation party."
NO RED FLAG
It's typical of children and teenagers with Asperger's to relate better with adults and younger children and to have more problems with peers. It's also common to have trouble in school because they may be disorganized, distracted, disturbed by changing routines and prone to concrete thinking.
"She's very good at memorizing as long as she puts the time in and goes over and over things. But relating information to a new situation -- that's hard for her," said Jan, a retired teacher like her husband.
Her Individualized Educational Plan (IEP) provided her with extended testing time and a few other rarely used accommodations. Every evening, the Hellweges went back over all the material Emily learned at school.
"We sent her to school during the day and we homeschooled her at night," Dick said.
It never crossed their minds that Emily might have Asperger's. It wasn't formally recognized by psychological experts until Emily was 8, and not commonly diagnosed until years later.
"A red flag should have gone up because we were both educators, but it just didn't," Jan said. "I guess some of that was partly denial."
THE ASPERGER'S DIAGNOSIS
The diagnosis finally came after the colleges to which Emily applied required testing to document her need for classroom accommodations. Diagnosticians asked Emily to return more than a half dozen times, and after five months, they gave the Hellweges the news that Emily had Asperger's. Looking over the results, Emily agreed they were right on.
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"I was relieved to know what I had, and when I read it, I'm like, 'Yeah, that's me, that's me.' Like the shyness and the gravitating to adults, and basically the social part of it," Emily said.
One thing that sets Emily apart from many people with Asperger's is her varied interests: She loves sports, plays the flute and piano and has performed in several plays.
A few months after her diagnosis, when asked to write about a specific condition for her psychology class, Emily chose her own. The paper began: "People with Asperger's Syndrome see the world differently than everybody else." More than five years later, she agrees with that statement.
She also still believes in her closing lines: "They will be able to make a choice over how they live, decide what kind of work to do ... date, get married, have children, and live a normal life."
EMILY SHOWS THEM ALL
Brentwood high school counselors saw a different path for Emily than the one she and her parents sought.
"The best option they gave to us was she should go to a technical school and learn a craft or a skill of some kind. She would never be successful in college, they said," Dick recalled.
During her senior year, what had been Emily's lackluster sports career took a new turn that would foretell her future. Always a sports lover, Emily's involvement in softball and field hockey was mostly spent warming the bench.
"In her freshman year, she played three minutes," Dick noted.
During her final season, she spent a little more time in play, and in one particular game in which Brentwood was beating Parkway North 5 to 1, she was called out onto the field.
"She was put in with five minutes left," Dick said.
"No, it was more than that," Emily corrected her dad.
"OK, maybe 10," Dick replied.
"It was in the second half with maybe six or seven minutes left to go," Emily insisted, suddenly sounding more like a typical young adult chafing under her parents' wing and also exhibiting a characteristic Asperger's trait: a need for precision.
"And that's not the beginning of the story," Emily continued. "I was first put on left wing and since I usually play right wing, I had no idea what to do. Then they switched me over to right wing."
Both father and daughter agree on the happy ending: "I was in the right spot -- and I scored my only goal," Emily announced, beaming.
That crowning moment of her sports career, her 3.5 final grade average and her acceptance to all five colleges to which she applied helped Emily sail out of high school and into MacMurray College in Jacksonville, Ill. with great promise.
COLLEGE GIRL, CAREER WOMAN
Frequent visits back and forth, and her parents' ability to talk with Emily face-to-face over the internet kept some of her family support in place while she attended college two hours away.
Still, she struggled, and not all the teachers understood her disability. "Sink or swim," was the attitude of some, Dick said.
Emily labored to keep a C average, earning As in her major classes of sports management along with some Ds and even Fs in a few other courses. Many summers, the Hellweges weren't sure if Emily should return in the fall.
"I'd say, 'I think we should just let her stop. I just think this is too much for her,'" Jan said. "And he's like, 'No, we're not letting her quit."
Marjorie Howard, coordinator of the women's physical education program, witnessed Emily's own determination.
"If she didn't understand something, she'd say, 'Wait a minute; explain this to me,' and that's fine. The only bad question is the one you don't ask," Howard said.
In her senior year, under the guidance of a new college president, Emily made the Dean's List. At graduation, she said goodbye to several close friends she'd made at MacMurray.
This summer, she's living at home. Her dependence on routines hasn't changed.
"She walks at certain times and eats at certain times," Dick said. "She used to call us six or seven times a day at the same time every day."
Now Emily's schedule includes volunteer work for the Cardinals', Blues' and Rams' charitable organizations. She's hoping the contacts she's making will ultimately lead to a career in sports-related event planning. Graduate school is also a possibility.
Dick worries about what kind of job Emily will get since she doesn't drive. She also doesn't cook, and living on her own is still a hazy goal. But Emily, undeterred by difficulties that might discourage others, is philosophical about her future.
"I know this may take some time, but I am willing to make that effort," Emily said. "I've had to overcome many obstacles to get where I am now."
Nancy Larson is a freelance journalist who has a 19-year-old son with Asperger's.
