Autism’s Impact on a Family

English professor chronicles raising a son with severe autism

By Courtney Jolley  |  Photos by David Rehor
Mark Osteen

By the year 2000, autism—a developmental disability now believed to affect as many as one in 110 people—had gone from a poorly understood, rarely recognized condition to something of a household word. Magazine articles and news programs examined the growing “autism epidemic,” and the disorder became increasingly prominent in popular culture, with autistic characters featured in books, movies, and television programs, and even a few celebrities speaking out about the challenges of raising children with autism.

The father of Cameron, then a 10-year-old boy with autism, Mark Osteen, Ph.D., a professor of English at Loyola, should have been thrilled by the growing awareness of the disorder. But none of these stories mirrored the experiences Osteen and his wife, Leslie, were having with Cameron. Screaming. Aggression. Insomnia. Compulsions. Endless searches for new schools, new therapies, new experts. Constant stress, and frequent threats to the survival of their own relationship.

“The media depictions of people with autism tended to paint people with autism as quirky geniuses,” said Osteen. “No one was talking about the kids with severe behavioral and medical issues, kids like Cam. No one was saying what it was really like. I knew how alone and isolated we felt, and I thought that if sharing some of this could make someone else feel less alone, we could make something positive out of something that seemed so horrible, and also do something positive for Cam.”

That summer, Osteen began keeping a detailed journal, which he has continued ever since. That journal became the foundation for Osteen’s new book, One of Us: A Family’s Life with Autism.

Once he decided to move forward with the book, Osteen began the arduous task of recreating Cameron’s earliest years. “I had too much from the last two years, and almost nothing from earlier,” he said. “I went through school notes, memos from doctors, and started piecing things together.”

Already the author of two books and many academic articles, Osteen faced a different set of challenges in writing the memoir—and not just the ones posed by the painful emotional terrain the book covered.

“I had to unlearn most of what I’d been taught to do as a scholarly writer,” he said. “Scholarly writing is all analysis, and you minimize that for a narrative. You don’t comment in a narrative—you give the action and that’s all. Even figuring out what goes where, how to organize the book, was tough. In a scholarly work, the text tells you. Here, I knew the ending, but not how I’d get there.”

Developing the first draft proved less of a writing project than an emotional exercise.

“That first draft was hard to write,” said Osteen. “These memories were just painful to think about. It was raw, mad, really angry. On two or three occasions, I put it aside for four to six months, got some distance, came back, and jettisoned some stuff. When you’re close to it, it’s really hard to cut. As it is, I had to cut things I felt people really should know.”

Osteen’s first draft came in at about 150,000 words, far too long, and, according to his first editor, far too gloomy.

“From that point, the process started to happen, and it became ‘material,’” said Osteen. “By the third draft, it started feeling like more of a writing project. I could do the editing I needed to do, and it went from catharsis to coherence.”

In writing the book, Osteen needed to confront his actions and the decisions he had made—both good and bad—as he and Leslie struggled to help Cameron the best they could. “It was very therapeutic ultimately to write the book,” said Osteen. “I made mistakes. I was a jerk. The flaws came out.”

One of the book’s most searing passages focuses on Osteen’s realization that he had long valued people based entirely on their intellectual achievements. How then, should he value his own son, who at 21 years old now, cannot read, perform simple math, or speak more than a few words?

“I grew up in a small, blue-collar logging town, where everyone was an athlete,” said Osteen. “I was always better than everyone else in school, and I told myself that all that other stuff didn’t matter, I was better than everyone else because I got out. It became a prejudice. With Cameron, when we decided to stop his Lovaas therapy because he wasn’t making any progress, I realized the therapist was saying he wasn’t learning because he wasn’t capable of learning. I started wondering what intellectual capacity really means. Does it make you better, more human? I realized that to accept Cameron fully, as a human, was to reassess my measuring stick. He is still valuable, still worthy of our love.”

The book offers an equally intimate, candid portrait of Osteen’s marriage. And, while Leslie played a critical role in the research process, in recreating events, and even narrating scenes in which Osteen was not actually present, his wife still hasn’t read the book in its entirety.

“It’s too painful. She doesn’t want to relive all of this,” said Osteen. “Plus, it’s written from my perspective. People often resent being turned into a character.”

Since the book came out in November, Osteen has fielded responses from longtime colleagues
who never had any idea what he and his family were facing, high school friends who were shocked his and Leslie’s marriage had weathered the storm, and people working with Cameron who saw the book as a unique way of better understanding a young man whose needs and desires can still be very difficult to know.

Currently wrapping up an academic book, Osteen is considering writing another book following Cameron’s experiences as an adolescent and young adult with autism, as well as one based on the life of his late father.

“I’m more interested in creative nonfiction now,” he said. “I want to get better at it. I could have written at least two monographs in the time it took to write this book. But even if it hadn’t gotten published, it would have been the right thing to do.”

See an excerpt from One of Us on the next page.

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