Q&A With Mark Osteen


Your son, Cameron, has severe autism, and you’ve said you wrote this book to give him and others with the condition a voice. What do you want readers to know about autism, and what do you think Cameron might want them to know?

There are two popular conceptions of autism, and they conflict: on one hand, it’s seen as an unmitigated curse that heroic parents must cure; for higher-functioning people, on the other hand, it’s represented as a set of charming quirks coupled with some outlandish savant skill. Both views ignore the day-to-day struggles and triumphs of the majority of autistic people and their families. I want people to know about these struggles and these triumphs, as well as the fact that autism is usually a lifelong condition.

Cameron might want people to know that although he may act differently and perceive the world differently from most, he is a feeling, thinking human being who, like all people with disabilities, deserves acceptance and respect.

What do you think the world is like for someone with severe autism? What were the challenges of capturing that as a writer?

As I note in the book, for years I tortured myself with wondering how Cam perceived the world. I used to think that if I could just live inside his head for a couple of days, I could solve many of his problems. Reading the works of autistic adults gave me some sense of how he thinks, but these authors are able to read, write and speak for themselves, so in many ways they aren’t like him. I’m sure he must often be frustrated by his inability to communicate effectively, and is anxious to be understood and to have his needs and desires honored. But he’s like the rest of us in his love of music and other simple pleasures. We can learn from his ability to live completely in the moment.

We need empathy to understand any other person, and that was the primary instrument I used to get inside of Cam’s head. Watching him, listening to him, and living with him day to day helped me to figure him out. But neither I nor Leslie always succeeded in doing that, and that’s one of the book’s main themes—that Cam remains to some degree a mystery.

Did your approach to the book change as you considered getting started or during the writing process? Did you wind up with the book you expected to write?

The first drafts were much rawer, much angrier. In fact, the process of writing the book helped me come to terms with our experiences and quell some of that rage. As I wrote and rewrote I learned to accept not only Cam—the book is all about that process of acceptance—but also my own mistakes and flaws. The finished book is a more balanced treatment of Cam’s autism than it was when, fueled by rage and sadness, I began it.

How did your work as an English professor and literary scholar affect your approach? Is your autism book different from what a researcher or physician in your position would have written?

There’s no doubt that I’ve taken a “humanist” approach, rather than a scientific or clinical one. For example, in the chapter epigraphs I salute great writers who expressed thoughts and feelings that resonated with mine and Leslie’s. Their art helped me to place our experiences in more universal terms. Had I not been a literary scholar, I may not have appreciated the capacity for literature to help us feel what others feel and express those feelings beautifully.

You write that autism is not just an individual disorder, but a family condition. What do you mean by that? What advice do you have for parents of autistic children or children with any kind of disability?

Autism creates a powerful set of family dynamics: you are required to think with and feel with the person with autism. Because the autistic person needs so much attention and care, family members may become obsessed with the disorder and isolated from others. In those senses, the whole family “becomes” autistic. More than that, living with Cam has opened my eyes to my own autistic characteristics, shown me that, in fact, autism is part of a spectrum not just of “disability” but of all human abilities and types.

My advice? Educate yourself about autism and assess all treatments with a skeptical eye; look for real evidence that a treatment is suitable (and not dangerous) before trying it. But be flexible: don’t give up if one treatment doesn’t work. Listen to the autistic loved one and don’t mistake his or her needs and desires for your own. Separate the person from the disorder. Maintain some “autism-free” zone so that it doesn’t consume your life.

A high percentage of couples with children with autism end up divorcing. What was the impact of Cameron’s autism on your marriage and family life?

The book chronicles those effects in detail. Autism poses great challenges for daily living; those challenges, and the isolation they may bring, cause enormous stress. Small tensions or disagreements get magnified. It becomes tempting to look for someone to blame, so couples must be very careful not to scapegoat each other.

Your book is powerful not just for its emotional account of life with Cameron but also for its sense of humor. How important has humor been to all of you? Do you think that will surprise readers? Tell us about one or two of those lighter moments from the book.

Sometimes you laugh in order not to cry. But Cam has a great sense of humor: he makes fun of his mom, for example, by imitating her voice when she scolds him. And often he gives a little laugh—“ha ha ha”—to get you to laugh back at him.

Cam’s lack of inhibitions can create funny situations. He used to take great joy in bouncing on his little trampoline. The tramp sat in front of our picture window, and from there Cam could watch TV or listen to music as he leaped. He liked to jump stark naked, which offered a potentially intriguing spectacle for passersby. But nobody seemed to notice.

Once while out for a walk Leslie met a woman she knew from work. The lady asked where we lived. When Les described our house, the woman’s eyebrows went up: “Oh, where the naked boy lives!”

He isn’t constrained by social rules. Once, while standing in line at the supermarket, he approached a stranger, looked directly at her, and began loudly singing “Knees Up, Mother Brown!”

Beyond the embarrassment factor, Cam’s freedom from social norms can be liberating. He reminds us that many of these rules are artificial and constricting.

I understand that you also do research on severe autism. Can you tell us about some of your previous or current work in that area?

I organized a conference on autism and the humanities in 2005, and then edited a volume of essays taken from the conference. That book, Autism and Representation, was published in 2008. My comprehensive introduction to the book places autism within the field of disability studies and surveys a wide range of recent books and films that purport to represent autism. The other chapters—most written by scholars with autistic family members or by persons on the autism spectrum—cover topics such as the autistic imagination, and representations of autism in popular literature and cinema. I recently contributed an essay to a forthcoming book about fathers in academia, and to a special autism issue of Disability Studies Quarterly.

Where is the research and treatment of autism headed? What advances are likely and when might they happen?

The alleged connection between autism and vaccines has not been supported by scientific studies. Even so, a lot of dubious claims and treatments still circulate; many of the purveyors of these ideas and “cures” exploit autistic people and their parents financially and emotionally, while also drawing resources and attention away from more plausible treatments.

A consensus has begun to emerge that autism is caused by some combination of genetic abnormalities and an undetermined environmental factor. Unlike with, say, Down syndrome, the genetic abnormalities seem to be complex and varied, and the attempt to pin down any specific environmental cause has been difficult (and sidetracked by the kinds of claims mentioned above). Seeking the cause of autism is important, but I think it’s more important for the autism community to focus on helping people who are already autistic to achieve a better quality of life and to pursue valid treatments and methods to obtain that, rather than chasing after some illusory panacea. We should balance the need to respect autistic people for themselves with the necessity to help them mitigate their communication and sensory problems and behavioral difficulties.

There seem to be a variety of resources available for children with high functioning autism. Is that true for children with severe autism? What recommendations do you have for parents of children like Cameron?

There are certainly more resources available now than when Cameron was a child. But people on the higher end of the spectrum get more attention from clinicians and from the media. Those with more severe autism are ignored, even though they need more help, perhaps because clinicians are more likely to publish articles about successful treatments.

Every autistic person is different, so a treatment that works for one may not have any effect on another person who seems similar. I’d tell parents to get their child treated as early as possible with a reputable method, and be flexible in their approach. Don’t let your observations be clouded by wishful thinking. Instead of looking for a miracle, celebrate small successes and build on them. Don’t expect your child to be something he or she can’t be.

To my mind, the most severe autism crisis today and in the future is the appalling and shameful inadequacy of adult services. Most of the autistic children being diagnosed today will be autistic adults, and unless our society and governmental institutions get their act together, these young adults will graduate from school into a world without adequate services. Autism advocacy organizations should shift some of their emphasis from cure and childhood to adult services and employment opportunities.

You talk about the painful decision to send 12-year-old Cameron to a full-time residential school? How did Cameron benefit from that experience? What is his life like now?

Cam has made significant progress in controlling his moods and learned some functional skills. But at age 21, he’s still significantly disabled, and will need a lot of support for the rest of his life. Just this year he moved from his school to a residential placement and day program. He resides in a town about an hour and a half from us in a home with two other adults and three full-time staffers, and attends a day/work program five days per week. He’s still adjusting to the new environment, but we’re cautiously optimistic. We’ve learned, though, that our job as parents will continue; we still have to speak and fight for him.

Why did you choose One of Us as the title of the book?

The title suggests how we learned to accept Cam as a person like the rest of us. Oddly, it was only after we felt we’d “lost” him that we began to see him for who he was, rather than as a product of our expectations and needs. Above all, the title means that autistic people are members not only of their own family, but of the human family.

One of Us is a very honest, real account of life with an autistic child. What do you hope to accomplish by telling this story?

I want to dispel some misconceptions about autism—that, for example, autistic people are all high-functioning; that they are valuable only if they have some savant skill; that recovery is the only story worth telling—and share other, more down-to-earth truths about people like Cam. I wanted to transform what was often a traumatic and frustrating experience into something that might help others. Above all, though, I wanted to give Cam—who can’t speak for himself—a voice, and to honor his presence in the world and make it meaningful.