I’ve never once written about autism. Not a single time. It’s not that I don’t think it’s an important topic—I do, and crucially so—but only that, each time I return to it, I realize how vast and complex the field is, how much it shifts, how multifaceted and equivocal is each study, each researcher, each point of view. It strikes me as one of the most debate-ridden topics in psychology – and rarely does any article or paper come out that someone (and someone intelligent and perceptive, at that) isn’t striking down a phrase or an argument or a stray formulation that “gets it wrong” (in their opinion, at least). That’s why, when I heard that Richard Panek, a science writer I greatly admire (who, full disclosure, also happens to be a friend) was undertaking a book on autism, in collaboration with Temple Grandin, I was intrigued, to say the least.
Panek is the author of, most recently, The 4% Universe—a book that made me, for one brief moment, think that I understood something about physics. (The only other writer who has given me that delusion is Richard Feynman.) The Autistic Brain had largely the same effect – except this time, I briefly fancied myself capable of entering the autism debate. That soon passed, but I was struck all the same by the incredible research and thought that had clearly gone into the writing—and by writing, I don’t just mean the content. I mean the full package: a collaboration with a high-profile researcher, written from her point of view, but clearly incorporating the ideas and work of two minds, two points of departure, two entirely distinct backgrounds and approaches.
And so, when I interviewed Richard for this piece, I was interested in the science of The Autistic Brain, it’s true, but perhaps even more so, in the thinking and process that went into the writing itself. How do you attack a field that is wholly new to you—and do so with a collaborator such as Temple Grandin, a celebrity voice of autism if ever there were?
Panek teaches writing in the creative writing programs of both Barnard and Goddard; in many ways, his insight into the writing process and his lucidity in analyzing the craft of non-fiction is to be expected. Still, I was struck by his ability to seamlessly merge the worlds of fiction and non-fiction, of scientific research and narrative voice, of third-person detachment and first-person projection. Our conversation ranged from autism and the DSM to neuroscience and biology—but what struck me most is the insight Richard offers into the art of writing itself: the role of his fiction background in “[lending] a storytelling quality, the spinning of a narrative complete with characters, conflicts, and all the other elements of traditional fiction;” the centrality of character and voice, regardless of genre; and the crucial importance of an open mind—and the ability to use your ignorance to your advantage.
I’ve been going over and over The Autistic Brain, looking for the perfect opening question, when it struck me that the book itself was a remarkably brave thing to undertake. I myself have never once written about autism. To be perfectly honest, I’m afraid to; I don’t think I could get the necessary expertise quickly enough to write a thoughtful piece. When you write about autism, you are always at risk of offending someone, getting something a bit wrong, being accused of not representing the current research fairly. Of course, one of the reasons for this is that the field itself is so dynamic and as far from straightforward as could be. So, a few questions: First, how did you feel about taking the topic on (and was your choice informed by having a co-author who is herself on the spectrum)?
I didn’t come to the subject. The subject came to me. Temple’s agent, who is business partners with my agent, asked if I would be interested in collaborating with Temple on a book about the autistic brain. I didn’t know much about the topic—hardly anything—but I certainly knew it was controversial. But I figured that Temple is the expert and I would follow her lead.
In light of your writing, do you think my view is overly cautious (even in my prior question, I’m afraid I was thoughtless in my wording of ‘on the spectrum’…)?
I do think you need to be cautious in writing about this topic. But Temple has been on the road giving talks about autism for twenty years or more. She knows where the land mines are buried and how to tiptoe around them.
You say that you decided you would “follow [Temple’s] lead” when you took the project on. How did you go about balancing her views with those of other experts and critics (since the field is not a uniform one)—especially since the book is written from her point of view?
I don’t know that the challenge was to balance her view with those of other experts. She has strong opinions, certainly, but they’re often based on her experience. And many of her views represent practical advice. I mean, who could disagree with the need hands-on care? I think what distinguishes her are both where her emphases fall and how to think about those strategies within a philosophical context.
I imagine what she, and then we, brought to the project was a broader sense of how to think about these topics—for instance, hands-on care: that you can sort out the symptoms on an individual basis, rather than saying simply, “This person is autistic” (as if that term applies uniformly); that, while not downplaying the obstacles, you can recognize in some individuals a particular kind of talent; that you can think about thinkers apart from the standard verbal-visual thinker dichotomy by adding pattern, or spatial, thinking as a category unto itself. The idea of spatial thinking certainly isn’t original, but the idea of thinking about it not as a subset of visual thinking but as a separate kind of thinking altogether is new. And we found hard-science, neuroimaging support for that hypothesis. Picture thinking actually seems to activate a different part of the brain than pattern thinking.
Speaking about Temple’s point of view: can you comment on that part of the writing process, creating a book from another person’s vantage point? I’ve noticed in your past books that you are careful to separate yourself from your narrative. “The Autistic Brain,” goes to the opposite extreme: a first-person story. Of course, that first person isn’t you, so in a way, you are still separated—but I would love to hear more about the process and thinking behind that, from your perspective.
In my previous books I have adopted a certain third-person style that I’ve borrowed from my background in writing fiction, though of course I’m writing non-fiction. This approach lends itself to a storytelling quality, the spinning of a narrative complete with characters, conflicts, and all the other elements of traditional fiction. We all see our own work lives in these terms: a narrative with ourselves at the center. I know from scientists I’ve talked to that they certainly see their work this way. They appreciate that I’m relating not the results of their efforts but the efforts themselves—that readers can understand their efforts from the inside-out. I feel that when readers see those efforts from the point of view of the scientists, the science becomes human; it arises out of people just like you and me trying to make sense of the universe. I realized early in collaboration with Temple that it offered an opportunity to tell a single narrative. Purely from a writing point of view, third-person lets me move from character to character; in this book, I had the opportunity to inhabit one “character.” Temple has an authoritative, distinctive voice. It’s a voice her followers love when they hear her speak. So I thought, Why not try to capture it on the page? The intellectual property, if you will, belongs to us both, though obviously she’s the expert. It’s probably to my professional detriment that the voice of the book allows the reader to see the material as Temple’s alone, but I’m hoping that my fellow writers, such as yourself, will see it for what I think it is: my formal expression of her efforts in developing her, and then our, ideas. But for the majority of readers, the response to this discussion would be, Who cares? And that seems right.
How has your understanding of what autism is and is not evolved through the writing and research?
As I often do in my writing, I came to the topic without knowing much about it—hardly anything, in fact. I consciously try to use that ignorance to my advantage: I figure I can use my learning experience as the basis for creating a narrative for the reader. For instance, I started with some very basic questions about context. Where did this diagnose come from? How has it changed? What does it mean? Essentially, I was asking, “What is autism?” Not a bad question if you’re writing a book about autism—and one that autism books by and large don’t address! They treat autism as a given. After I started researching the history of the diagnosis I realized that it parallels Temple’s life; the first diagnosis was in 1943, and she was born in 1947. I realized that I could hang the history of the diagnosis on Temple’s personal history, so that the reader is learning about it with the help of examples and anecdotes from Temple’s life. By this point in my learning process I had gotten comfortable enough with my newfound “expertise,” such as it is, that I could begin to bring my own history-of-science sensibility to the topic. I wound up dividing the history of the diagnosis into two eras: first the psychoanalytic, which ends with the first time the DSM includes autism as a diagnosis, in 1980, and then the behavioral, as clinicians and others try to figure out what makes someone deserving of the diagnosis. This line of thinking led to the realization on my part that Temple and I could frame the whole book as an argument for a new era, a third era, one that begins now. Instead of focusing on a cause that’s based in psychoanalytic theory or a diagnosis that’s based on outside observations of behavior, this third era would be biological. It would look for causes through neuroimaging and genetics, and it would try to understand the behavior from the inside, from the individual’s experience. Of course, this conceptual and structural strategy wouldn’t have worked if it didn’t complement the ideas that Temple already wanted to address!
Your book—and that specific approach, of going to a third era in root causes—actually parallels a lot of the current discussion around the rift between the DSM-V and the NIMH, and was written long before the institute’s announcement. It’s interesting to me that your thinking brought you the same place, despite the differing starting points. Do you have any thoughts or comments on this new diagnostic direction, beyond autism?
I don’t know that I feel qualified to speak about the DSM-5 beyond autism. But I will say I’m not surprised that the DMS’s handling of other diagnoses are coming into question. In my research I realized the DSM era of autism—that is, the post-1980 editions—as one in which outside observers study behaviors. As a writer, that dynamic reminds me of standing outside your character, or standing outside your story. There’s a value to that step—in the revision process. But first you need the subjective part of the narrative of the individual; you need to be “inside” the characters or the story. And that’s something we can begin to do now not only through self-reports but through neuroimaging and genetics.
Do you see yourself writing about autism again, keeping up with the developments in the field (if you can even call it a single field)?
I don’t know. If Temple wants to collaborate again, I’d certainly consider it. But my main focus in my own past three books has been astronomy, astrophysics, cosmology, especially in a history and philosophy of science sort of way.
How does this collaboration with Temple fit into your personal development as a writer (especially since it’s a departure from the trajectory of Seeing and Believing, The Invisible Century, and The 4% Universe)
A departure? Yes. A one-off? Maybe. But I’m eager to return to my own work now, and it would indeed be a continuation of what you kindly call “the trajectory” of my books. But I’d rather not say what the topic is at the moment.
Image credits: Richard Panek, courtesy of Richard Panek. The Autistic Brain cover, courtesy of Houghton Mifflin Harcourt.
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