The Unicorn and the Trash Bag: A Defense of Wariness

Reading Des Fitzgerald’s Tracing Autism: Uncertainty, Ambiguity and the Affective Labor of Neuroscience brought me more fully into contact with my own range of scholarly affect. I read it for the first time on an airplane, and was dimly curious about what the passenger in the seat next to me might be making of my sporadic chortles and chuckle-snorts and cheers, the faces I was making, my occasional irrepressible exclamations of astonishment, exasperation, gratitude, recognition. The experience felt a lot like a lively conversation in a pub with a colleague who is thinking through a vexing problem over a couple of beers, wringing his hands and tearing his hair and waving his arms. I felt a sense of camaraderie; the autism Fitzgerald is tracing the tracing of here is the same entity whose contours I have sensed in my own work, maddeningly difficult to elucidate but compellingly recognizable all over the place nonetheless, ringing out in resonances between the lines. The book is wonderfully personable. It is in many ways a book about being a human being with other humans, in all of our awkwardness and melancholy, with all of our weirdness and fascination and love turning up in unexpected places, mediated through the work that connects us and that comes between us all at the same time.

There might be something in my response to this book, my gratitude for its embrace of organized knowledge-work as a component of human co-existence, that is peculiar to people who are nerdy in a certain kind of way – people for whom such structured, sense-making work is a fundamental part of how we go about being in the universe. A young man I once interviewed for a research study on Asperger’s Syndrome described this fellowship to me:

Me and Robert, we’ll go to a museum, he’ll get all excited and I’ll just stand there in, in reverence. Of a dinosaur skeleton. Because that structure itself is just so compelling. And Michael is the physics guy. There’s just something about – knowing the universe. That even if you’re not totally into that, and it doesn’t strike a chord with you? There’s still something deep and meaningful. That touches – it touches us. I think for all of us.

This young man was talking about his friends who were also on the autism spectrum, and what they shared with each other, but I think the kinship extends more broadly, beyond those with autism spectrum diagnoses. It can certainly be extended to Fitzgerald’s scientists. The work they do, their way of knowing, has been accused, implicitly and explicitly, of separating them from the ambiguity and complexity of multidimensional social life, but the work is also one way in which they come into contact with that life and its liveliness. This fraught sympatico, between people with autism and the people who study autism and the people who study the people who study autism, glows like a fine thread throughout Tracing Autism in a way few other texts have been able to evoke.

By this point, my fictional pub scenario has gotten around to the second pint or so. This is when I generally go from being an eager and attentive listener to tearing my own hair and waving my own arms and saying a lot of candid things. So let me say, too, that there were things about this book that made me itchy (as, perhaps, was intended). The book forthrightly acknowledges that its reliance on interviews alone might be seen as a skimpy approach. I don’t think that’s the case in and of itself – these conversations seemed abundantly, generously sufficient for an exploration of the psychological and affective terrain of neuroscientific practitioners. But a focus on the inner life of particular scientists did not feel sufficient to justify the book’s overall exhortation to let down our wary paranoia when it comes to neuroscience as a whole. The author observes that he has “no interest in yet another account of what actually goes on behind the scenes at the laboratory” looking instead at “what neuroscientists think they’re up to, what the strange practice of neuroscientific experimentation looks and feels like to them, and how they talk about it when they are asked” (26). This is a deeply worthwhile endeavor that leads to an enjoyable and thought-provoking book. But in my view, a convincing case that we ought to be less critical of neuroscience (not just less critical of neuroscientists) would have to adopt a wider lens, taking into greater account the assemblage of practices within which neuroscientists and their labors are entangled. (There is, for example, practically no discussion here of how the work gets paid for, and by whom, and under what circumstances). It would need to look not only at individual motivations, but also at collective outcomes. At times, this book seems to take the stance that the road to hell cannot be paved with ambivalent, self-aware intentions.

I certainly sympathized with Fitzgerald’s provocative yawns in the face of incessant critique, and his closing encouragement to embrace the charisma of the “strange, risky and unexpected”. I also thought to myself that such a stance feels safer in a text where the people whose bodies will bear those strange unexpected risks are absent, as autistic people are absent here – a text, instead, peopled exclusively by the social scientists for whom risk and unexpectedness are a source of profit. This is, according to the author’s rubric, a rather tiresome sort of thing for me to point out, and I agree – I would just as soon move on to perseverating on a topic less politically correct, more edgy and innovative. But I continue to be troubled by the way these neuroscientific endeavors continue to pose threats to the integrity of our personhood, without much regard for the growing sophistication of our attitudes toward them. For example, within the same 2010 Scientific American article Fitzgerald cites, Tom Insel (at that time the head of the NIMH) proposes a vaccine to prevent depression as a reasonable goal for 2020. Precisely what it is we would be inoculating ourselves against remains unclear. This preventative intervention would arise through a new initiative (the Research Domain Criteria Project) that seeks to redefine psychopathology independently from subjective experience, and persistently conflates abnormality with pathology. Noncompliance, too, is easily re-inscribed as a neurological vulnerability. On a recent conference call, open to the public, in which officers from this RDoC initiative took questions from callers, I heard an inpatient psychiatrist observe that his patients often refused to take the medications he prescribed for them. Eager to conduct research on how to solve this problem, he was encouraged to consider such “lack of insight” a form of neurological abnormality that might be productively investigated through this preventative model. Such objectives suggest we ought to keep an eye on the kind of practical outcomes that Fitzgerald’s vision of a reparative attitude toward neuroscience, one that “basically hopes for the object of its discussion to do well” (168), would be supporting. What would it mean for such a project to do well?

A tension throughout this book, discussed with refreshing openness, is the degree to which such concerns are relevant to the author’s project. I found myself, as I read, feeling that they were quite relevant indeed. One of the book’s most compelling moments, exemplary of its overall ethos, features a young scientist who passionately describes her feeling of empathy and rapport with the autistic kids she works with. “I love the kids” she declares. And then a moment later:

But at the same time, I want to know why – what it is, fundamentally, about kids with autism that is different to typical kids, so how do they perceive the world, and view the world that might be different to us… and how… and what we might do to ameliorate any differences” [emphasis mine] (110).

This is a powerful statement, breathtaking in its breadth. To gloss this comment, as Fitzgerald does on the following page, as “retain[ing] a sense of disadvantages and problems that can impinge upon an autistic life – on things that may yet be in need of amelioration” diminishes the scope of her professed aim: to ameliorate any difference, not merely disadvantages and problems. Gentling her words in this way conceals a move that is deeply relevant to the affective tone of neuroscientific life, missing an opportunity to bear witness to its demands. What melancholies are evoked, what affectively rich ambivalences are generated, what traces are left when one invests one’s life energies in a project that is powered by fascination, appreciation and love for the very particularities it aims to eliminate? How does difference (as opposed to, say, social isolation, which she poignantly discusses elsewhere) become the problem to be ameliorated, even amidst heartfelt appreciation of (and, perhaps, lip-service tributes to) diversity? This is a question that may not be answerable without looking at the web of practices and pressures within which these scientists are embedded and through which their work is refracted.

A compelling metaphor appears in the book’s final chapter. It has stayed in my mind in the time since I’ve read and re-read it, as a powerful evocation of the way autism science shifts between levels and perspectives in the constitution of its object(s). There is a tapestry. Woven into the tapestry is the figure of a unicorn, emerging through the interweaving of many different threads. The tapestry is concealed behind a sheet of black plastic, into which the scientist-protagonists are gradually making hole after tiny hole. In doing so, they create a “combination of ongoing accounts of blue, red and gold” (167). Is autism the unicorn? Is autism a few spots of color? Is autism a bunch of holes? What if it is all of these, simultaneously or intermittently, emerging in the movement between frames? The stakes of these questions change dramatically when we look not only at the process of looking, but at the process of doing something about the object of that gaze – the decision to sew up the unsightly holes, perhaps, or to ameliorate those few multicolored spots of difference, to take aim at the hidden target or to hold our fire in the faith that behind that torn up trash bag might be something worth preserving. Tracing Autism elucidates some of the movement between these modes, opening up new ways of occupying such in-between, indeterminate, generative spaces. It is a project well worth expanding into broader arenas of neuroscientific practice.