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2004 United We Read Elizabeth Moon Author Interview With Paul Witcover Paul Witcover: You're known as a science fiction writer, but even though The Speed of Dark is set in the near future, the world you depict is not too different from the world of today. Certain technology, such as genetic engineering and nanotechnology, is more advanced than at present, but the society in which Lou Arrendale and the other characters live and work seems contemporaneous. How much of a change of pace was this novel for you? Is it science fiction? And if so, what makes it science fiction? Elizabeth Moon: This was definitely a change of pace. Occasionally an idea or a character blindsides me and knocks me right out of what I intended to do next. Whether it's science fiction or not depends on the reader's definition of science fiction. Although it's set in the future (or near future), the issues facing the characters are indeed those of today. Paul Witcover: What is autism? Is it a genetic condition? A mental illness? The result of an infection? Physical trauma? I've even heard infant immunizations blamed. Elizabeth Moon: Autism is a pervasive developmental disorder. The diagnostic criteria are found in DSM-IV (the Diagnostic & Statistical Manual of Mental Disorders published by the American Psychiatric Association), but this source is very much out of date for treatment and prognosis. Most children with autism are clearly born with it, and the best current evidence suggests that something begins to be different in autistic fetuses well before birth. It is not known whether maternal infections or trauma can cause this "difference." It used to be considered a mental illness (which is why you find it described in the psychiatric literature), but it's not currently given that classification. Since it occurs at higher frequencies in families with other cases of autism and related neurological conditions, genetics certainly plays some role in many, if not most, cases of autism. Some people will blame anything, however unlikely, and in the face of contrary data; there is no evidence that infant immunizations cause autism. Paul Witcover: What are some of the warning signs that parents should be aware of? Where can people go for more information or help? Elizabeth Moon: The autistic spectrum includes a range of developmental disabilities that are similar but not identical. Classical autism presents as developmental delay, often global, but particularly affecting sensory integration; fine-motor coordination; language, both receptive and expressive; and social interaction. The amount of delay varies widely. What a parent will notice first, most likely, is marked delay in language acquisition, marked delay in normal social interaction, and very restricted activities/interests compared to other children the same age. The autistic child may not talk at all, or speak only to echo what he just heard, or repeat that jingle. He may ignore TV to sit by the bureau flicking the handles of drawers over and over. He is likely to do the same thing hour after hour, day after day: stacking blocks, winding and unwinding string, some other repetitive activity. Autistic individuals have great difficulty learning to "read" the social cues the rest of us use—tone of voice, facial expression, etc. A child whose autism is milder, and undiagnosed until school age, will usually demonstrate very uneven abilities—excelling in one subject, and flunking in another—and will also have the associated difficulty in reciprocal social interactions. Paul Witcover: Milder . . . Is this where Asperger's Syndrome comes in? Elizabeth Moon: Asperger's Syndrome, which is related to autism in many ways, does not involve language delay—Asperger's kids may talk early and fluently—but does involve delays and difficulties with social interaction similar to those in autism. As with classical autism, there is a wide range of severity. If a child talks "on time" but does not develop reciprocal social skills—can't hold a conversation with turn-taking, doesn't play with others—that's also cause for concern. All small children do things that autistic children do, all the lists of behaviors you may have seen in magazine articles, but normal children also do much more. If they repeat advertising jingles ad nauseam, they can also demand more cookies, ask questions, play pretend games with friends, argue about bedtime. Normal children may also have strong idiosyncratic interests. I was horse-crazy, and made endless parades of my toy horses. They may flap their hands, spin the wheels of toy cars, act shy and refuse eye contact, or be unusually sensitive to texture or taste, all without being autistic . . . if the rest of their development is coming along at the usual rate, if these "autistic" behaviors aren't the only ones they have. Children do vary in their acquisition of social skills; they all have to be "civilized" into the normal give-and-take of social interaction. What matters is not any particular behavior, but the overall pattern of development. Since language delay has several causes, all of them important to a child's future, any delay in talking should be checked out. The child may have a hearing loss or any of several other problems—autism is only one of the possibilities—but the sooner the cause is identified and therapy begun, the better. Parents today have many resources. If they have a concern about a child's development, any of the basic books on infant and child development will give them some guidelines. Day-care and nurseryschool teachers, who have seen hundreds of children, are also helpful resources—they know when a given child is or isn't making developmental milestones. Doctors vary in their understanding of autism; some may be reluctant to make the diagnosis early because when they went to school it was a very bad one. But most family practitioners and pediatricians are at least familiar with the diagnostic criteria, and can help families determine if autism is a possibility. Paul Witcover: Lou Arrendale is an extraordinarily vivid creation. There have been books and movies that feature autistic people before, such as Rain Man, but I can't recall another treatment that gets inside an autist's head as deeply as you do here. I know you have an autistic son; how much of Lou is based on your son and your experiences in raising him? Elizabeth Moon: Our son was certainly the starting point and the inspiration— eighteen years of 24/7 experience provides a lot of information (he was seventeen or eighteen when I started the book). In addition, I had read books by Oliver Sacks; Temple Grandin, who is herself autistic and a fine advocate for the autistic community; Clara Park, whose autistic daughter, a talented artist, is now in her forties; and others, and had found online groups of autistic individuals who demonstrated the wide variety of personalities and abilities that autistic people have. Lou's character is, however, quite different from that of our son; Lou is the product of early intervention and educational advances that were not available when our son was born. He's also innately more intelligent, with a high IQ; our son's is low normal. Lou is by nature a quieter and more thoughtful person; our son is more exuberant. Paul Witcover: Despite being autistic, Lou functions better than many so-called normal people. He has a job, friends, interests. He is highly intelligent and extremely sensitive to certain sensations and perceptions, such as, for example, smells and textures. And his pattern recognition abilities, which he relies on in every aspect of his life, from his job at the pharmaceutical company to his hobby of fencing to his interactions with others, are phenomenal. How typical is Lou of people with autism today in terms of his social skills and mental abilities? Elizabeth Moon: Here it makes a huge difference which generation of autistic persons you're talking about. Most autistic children born in the 1940s and before were characterized as having "infantile schizophrenia" and were institutionalized early as hopeless (as in Rain Man). Only a few exceptionally intelligent autistic children had the kind of support they needed to achieve independent living as adults. As late as DSM-IV, the prognosis was that only 30 percent of the most intelligent and capable autistic persons would ever live independently. However, with the advent of mandated public education for all students and early childhood intervention, the situation has improved markedly. Social problems are still the main reason for autistic persons not achieving full independence, but more and more of them are holding jobs and living in less sheltered environments. They are still earning less than non-autistic persons of equivalent intelligence, and autistic persons who are also retarded or have another disability (physical or other) are still likely to need lifelong assistance of some kind—but few now are consigned to residential institutions. I expect that in the next five to ten years, as children who received good therapy in the birth-to-five-years range reach adulthood, we will see a reversal of the DSM-IV prognosis, with 60 percent or more holding jobs. Assuming, of course, that the economy improves . . . Lou's sensitivity to sensory input and his pattern-recognition skills, however, are common to most autistic individuals. Sensory perception and sensory processing differences are universal. If there is an autistic child anywhere who tolerates tags in T-shirts or bulky seams in socks, I never heard of one . . . Paul Witcover: How is autism treated today? Have you seen much progress since the birth of your son? Do you think that we are on track toward the sorts of advanced therapies available in your book? Elizabeth Moon: Autism is treated today in a variety of ways—the most useful being intensive supportive therapy for young children. The earlier autism is diagnosed, and the earlier families begin helping these children develop, the better the prognosis. Communication therapy (not just speech therapy), sensory integration therapy, skills training (including social skills training)—all these and other therapies, not necessarily the same for each child, make an enormous difference. Autistic children do continue to develop; what you have with an autistic toddler, an enormous and terrifying challenge, is not the limit of what's possible. Certainly there's been a lot of progress since our son was born. I had to figure out a lot of things for myself—not much was available, at least not here. But after the legislation that mandated early childhood intervention for disabled children, more and more people were working in the field and soon began to discover what worked best. Positivereinforcement behavioral shaping—more on the model of Karen Pryor than the rigidity of the academics, in my opinion—works best. I definitely think that the sort of advanced therapy I wrote about is within reach; whether the research heads in that direction or not will depend on funding. But in the process of writing this book, I was reading an international neuroscience journal (Nature Neuroscience), and kept worrying that the science was catching up with the story all too fast. Paul Witcover: Lou is constantly questioning what it means to be autistic and what it means to be normal. He comes to believe that the two are points along a spectrum rather than wholly unrelated ways of being. I think this must be true because of my own experience in reading the novel. At first, I found Lou fascinating but alien; I could sympathize with him, but from the outside looking in. Then, as I read on, a curious and amazing thing happened. I began to empathize with Lou. His way of thinking stopped seeming alien to me and began to seem human. In fact, I began to recognize more and more of myself in him. When the demands of daily life took me away from the book, his voice stayed with me, coloring my perceptions of the world, until I felt almost as if a part of me were autistic. It was no longer possible for me to think of Lou as alien, and it even became difficult to think of him as damaged, exactly. Just different. Which raises a lot of interesting practical and philosophical questions about autism . . . and not just autism. Elizabeth Moon: Doesn't it, though! To a large degree, we (meaning society in its judgmental role) create aliens from humans by excluding them, by defining them as too strange, too difficult. Human cultures have always done this. It helps a group to bond, if they define nonmembers as completely different. Cultures have defined other races, religions, nationalities, and even economic groups as "not really human" and thus outside the rules that govern behavior in the group. And we've done it with disabilities. Sometimes the disabled are treated as children (We know what's best for you . . . ) and sometimes as monsters who must be confined or even killed. Paul Witcover: The other side of this coin would be the criticism that you've described autism too well; or, rather, have romanticized it, made it seem appealing in its strangeness, as if to be autistic were to be like Star Trek's Data or Mr. Spock. How would you respond to this criticism? Elizabeth Moon: With a loud snort . . . No parent of an autistic child would ever romanticize autism, or minimize the strain it places on both the child and the society in which that child lives. Hours of screaming when nothing would comfort him . . . cleaning up smeared feces . . . endless days and nights of struggling to understand the child's communications, and communicate to him . . . nothing romantic about that at all. It was hard work, and tough emotionally (on him as well as on us). For most of his life, we had him 24/7, 365 days a year (ordinary baby-sitters can't cope)—there were no nights out, no weekends off. Respite care, in those days, was not available. But I definitely chose not to demonize autism, which is what many magazine articles do: They treat autism as the worst, most horrible, most alienating of the developmental disabilities, a complete and utter tragedy for families, a wasted life with no possibility of joy or fulfillment. That's simply not the truth. The autistic child is a fully human child, capable of receiving and giving love, capable of enjoying and giving pleasure. The autistic persons I met online, even when they described themselves as alien, demonstrated all the common human emotions and desires: They want to be around people who understand them, who like them as they are. They want to have a comfortable living and working environment, to be treated with respect and dignity. They want to eat what tastes good to them, and avoid what tastes bad. They want friends who share their interests; they want to enjoy life in their own way. If they believe themselves to be alien, it is because we, the "normals," have told them over and over how impossible they are. We try to insist that they must become like us to be acceptable—which makes about as much sense as insisting that someone change his skin color or eye color or height. Paul Witcover: What feedback have you received from autists and members of the autistic community, parents, and researchers? Elizabeth Moon: Very positive so far. Several autists have contacted me and told me they like the characterization of Lou. I hear from parents and special ed teachers that the book is beginning to spread through their communities (parents and teachers of autistic children are busy people and rarely find the time to read books when they first come out). Researchers I would imagine are focused on their research and pay little attention to fiction written on their topic. Paul Witcover: Your novel has been compared, perhaps inevitably, to Daniel Keyes's classic, Flowers for Algernon. Do you think the comparison is valid? Elizabeth Moon: I think it's flattering—that is a great story. On the other hand, most people who've read both have ended up concentrating on the contrasts rather than the similarities. Paul Witcover: The title of the novel, The Speed of Dark, often contrasted by Lou with the speed of light, becomes a metaphor for a lot of things: prejudice, ignorance, death. It is also, more generally, the unknown. How did your understanding of this phrase evolve in the course of writing the novel? :Elizabeth Moon: When a title really works, it begins to resonate with more and more elements of the story and its underpinnings . . . and this happened to me. At first it was more a clever than a wise choice. (It's one of the few places where our son "appears," since he gave me the title one day early on. He came in, leaned on the doorframe, and said, "If the speed of light is 186,000 miles a second, what is the speed of dark?" I gave the usual "Dark has no speed" answer, and he said, "It could be faster. It's there first.") But in the writing, the other metaphorical connections formed. The book grew after Lou, in a way, following him in a somewhat different direction than I had expected. Paul Witcover: I had the same reaction to the "speed of dark" question when Lou raises it in the novel. But then I realized that it was exactly the sort of question Einstein was famous for asking himself; in fact, I recently read an article that speculated that Einstein might have had Asperger's Syndrome. Elizabeth Moon: Many scientists and engineers have behavioral traits found in the autistic spectrum; there's been speculation about Einstein for years. But we simply don't know enough about his childhood to make a firm diagnosis. There are other causes for language delay, and someone can be obsessive, absentminded, socially inept, and brilliant without being autistic. Still, it could be true. The more we've learned about the autistic spectrum, the more it's clear that many people are "a little autistic"—share some of the same behaviors, to a lesser degree—and yet function well in the world. Paul Whitcover: How did writing The Speed of Dark change your views on autism . . . and normality? EM: Having a child with autism changed my views on autism and normality . . . writing the book gave me the chance to share those views. PW: Did it change your relationship with your son? Elizabeth Moon: No. Our son is himself, not a fictional character, and our relationship is the product of almost twenty years of interaction. He has no interest in the book. I tried to read him bits of it while I was working on it, to get his reaction—and his reaction was to zone out. Paul Witcover: If the cure that is offered to Lou and his fellow autists were available today, would you want your son to try it, despite the dangers? Elizabeth Moon: I don't know. One of the great challenges for any parent of a child with disabilities is how to love the child as he/she is, and yet remain open to change that may be beneficial. Some people come down hard on one side or the other of this: the parents who insist that they would never want their disabled child to be cured because that would invalidate their love for the child as he/she is, versus the ones who insist that everyone should leap at every chance at a cure. I can't. Part of it is his age now. At two, three, four, five, I would have taken a "magic bullet" cure in a heartbeat, assuming that it had to be better than where he was. Now? Our son at this point is an enthusiastic, happy, loving young man, eagerly learning what he can in special ed classes in his high school. Losing any of those characteristics would be a terrible loss. But if he could talk easily with the girls he so admires, if he could use his body and mind more easily, that would be a great gain. If/when such therapy becomes available, it will have to be his decision. Paul Witcover: It turns out that Lou's company is not acting altruistically in offering Lou and his fellow autists the chance for a cure. Just as the procedure can give them more normal neurological responses, so, too, can it impart autistic responses, such as enhanced pattern-recognition abilities, to non-autistic people, perhaps making them more productive workers. Are you concerned about the potential misuse of advanced therapies, genetic and otherwise, that are being developed today? What safeguards, if any, are in effect to prevent such misuse, by both the government and the private sector? Elizabeth Moon: Any therapies that change brain function can be misused—though what constitutes misuse is presently the hot topic in this part of bioethics. Recent articles in various journals have discussed the ethics of memory enhancement (fine for Alzheimer's patients, but what about college students?), attention enhancement (okay for fighter pilots, but what about college students?), and others. Fixing a neurological problem is one thing; enhancing one's own performance is another; imposing the requirement to enhance someone else's performance . . . slides over into mind control of a very literal kind.In my opinion, this is an area where research and clinical utility are out ahead of safeguards. Nobody wants to safeguard the Alzheimer's patient from enhanced memory—that clearly improves the patient's quality of life. But should the college student take the same drug to improve his ability to cram for a test at the last minute? Is it "fair" to give yourself a better memory, or twenty points more IQ? Is it fair if your parents, who paid for that expensive college, do it to you by sending you drugged brownies? If your employer puts it in the punch at the company Christmas party? Or, conversely, is it fair if your parents refuse to let you improve your intelligence, when you are struggling, because they think you're just lazy? Experience shows that once a therapy exists, someone will find a new (and to many, a less ethical) use for it. "Safeguards" are put up afterward, trying to shut the barn door before all the horses get out. Paul Witcover: Has there been any interest from Hollywood? The part of Lou Arrendale would be an actor's dream! Elizaeth Moon: You'd think so, wouldn't you? There've been nibbles, but no deals yet. Courtesy of Ballantine Books For further information contact: Kansas City Metropolitan Library & Information Network 15624 E. 24 Highway Independence, MO 64050 Phone: (816) 521-7257 Fax: (816) 461-0966 Email: sburton@kcmlin.org Last Updated 7/1/04