Autism has attracted a great deal of attention in recent years, thanks to dramatically increasing rates of diagnosis, extensive organizational mobilization, journalistic coverage, biomedical research, and clinical innovation. "Understanding Autism," a social history of the expanding diagnostic category of this contested illness, takes a close look at the role of emotion--s Autism has attracted a great deal of attention in recent years, thanks to dramatically increasing rates of diagnosis, extensive organizational mobilization, journalistic coverage, biomedical research, and clinical innovation. "Understanding Autism," a social history of the expanding diagnostic category of this contested illness, takes a close look at the role of emotion--specifically, of parental love--in the intense and passionate work of biomedical communities investigating autism. Chloe Silverman tracks developments in autism theory and practice over the past half-century and shows how an understanding of autism has been constituted and stabilized through vital efforts of schools, gene banks, professional associations, government committees, parent networks, and treatment conferences. She examines the love and labor of parents, who play a role in developing--in conjunction with medical experts--new forms of treatment and therapy for their children. While biomedical knowledge is dispersed through an emotionally neutral, technical language that separates experts from laypeople, parental advocacy and activism call these distinctions into question. Silverman reveals how parental care has been a constant driver in the volatile field of autism research and treatment, and has served as an inspiration for scientific change. Recognizing the importance of parental knowledge and observations in treating autism, this book reveals that effective responses to the disorder demonstrate the mutual interdependence of love and science. ...more
Hardcover, 340 pages
November 27th 2011
by Princeton University Press
(first published January 1st 2011)
This book is a tour de force of medical ethnography and STS, as Silverman dives deep into the quagmire of autism and returns unsplattered by its many controversies, and with a unique understanding of the inner workings of one of the most complex and confusing medical crisis of the modern era. Silverman develop a theory based on love, on the affective ties that bind families containing an autistic member together, on what inspires therapists in the difficult task of working with children with autThis book is a tour de force of medical ethnography and STS, as Silverman dives deep into the quagmire of autism and returns unsplattered by its many controversies, and with a unique understanding of the inner workings of one of the most complex and confusing medical crisis of the modern era. Silverman develop a theory based on love, on the affective ties that bind families containing an autistic member together, on what inspires therapists in the difficult task of working with children with autism, and in the battles over the possible causes and cures for the syndrome. Love, as developed by the book, is not always good; it drives action but it also raises the stakes of debates and makes very real enemies of people who should be working together: doctors, parents, and self-advocates.
Silverman conducts a study of the public statements of major figures in the history of autism: Leo Kanner, Hans Asperger, and Bruno Bettleheim. These psychiatrists were the first to distinguish autism from other forms of childhood cognitive disability, separating a class of affective and emotional disorders from the undifferentiated, institutionalized mass of imbeciles. In large part, this discovery could only take place in an institutional context, as the raw material of the ‘retarded’ became grist for a scientific apparatus of cataloging.
One thing that struck me here, in a story that I expected to have clear villains and heroes, was the ambiguous figure of Bettleheim. Bettleheim is best known for postulating the “refrigerator mother” theory of autism, which blamed subconscious anger from the mother to the child for blocking proper development. This psychodynamic theory has zero basis in truth, and the pathologizing of parents caused an immense amount of pain to blameless people. Yet Bettleheim’s Orthogenic School was one of the most humane environments for autistic children to experience, with every surface and experience carefully designed to help them “emerge.” The theories were almost certainly bunk and the methods unreliable (such as having Joey the Mechanical Boy rebirth himself from an egg), but Bettlesman love could not be denied. Conversely, more “scientific” therapists coming from a Behavioralist perspective used adversive condition-shouting, slaps, and electric shock-to fix the behavior of autistic children. Where is the love?
The latter half of the book focuses on the modern controversies in the broader autism movement. First, who has the right to speak for people with autism: parents of autistic children, or autistic adults themselves? Is autism a disease, or is it a valuable part of our neurodiversity?
The second controversy is the one that gets people in trouble: in brief, do vaccines cause autism? Or rephrased, what kind of scientific evidence is ‘valid’ when talking about children with autism. From an epidemiological perspective, there is absolutely no evidence that vaccines cause autism-in fact, the overwhelming preponderance says precisely the opposite. From a toxicological side, the science is much less clear. Thiomersal (a mercury-based preservative used in vaccines) is neurotoxic, although its effects in the real world are not well understood. The immune system is complicated, and some autistic children do display symptoms of ‘chronic measles’. But is there a causal link, or do the symptoms of autism simply develop at the same time?
The fact is that the neural etiology of autism is remains completely unknown, but close case studies of children conducted by their parents have revealed a wide range of biological abnormalities in autistic bodies. Special diets, antihistamines, even experimental chelation therapy, have all worked for some children. The difficulty is translating these case studies into a medically valid RCT, given the wildly divergent levels of expertise and interest between parents and scientists. In fact, there might not even be a single ‘autism’. Rather, a host of distinct biological differences causes the same affective symptoms-a state which would make clinical trials nearly impossible, since any treatment would only work on a small subset of the “autistic” population.
Love plays a role again: No rational person would want to see ancient plagues return, but parents who love their children can only see the harm done by uncaring pharmaceutical bureaucracy. After reading this book, I have a much greater respect for the difficulty of this issue, and for healing the wounds between medical practitioners who know far less than they would like, and parents who demand answers now.
For my own sake, I wish that the book had focused more on the integration of autistic children into the education system. The book talked a little about the unique role and power of diagnostic technicians responsible for administering the various observation tests, but social workers, teachers, and various types of therapists are some of the most important people in the story of how autism relates to the broader society, and their voices are mostly absent.
Finally, this book gave me some interesting ideas about how to structure my own research on ADHD. Who were the medical figures most responsible for working with hyperactive children in institutions from the 1920s onwards? How did ADHD become a broad social diagnosis? What is the structure of advocacy groups, and their relation to the medical/scientific/pharmaceutical apparatus? And finally, is there a concept as powerful as “love” that encompasses the whole framework of ADHD? ...more