Bests & Worsts Reviews from Amazon

Steve Silberman is a journalist and writer for WIRED magazine who has written many readable stories on medicine and human health. In this book he brings many years of reporting and training to delve upon one of the most prominent health issues of our time – autism. Silberman’s book is rich in both human and scientific detail and shines in three aspects. Firstly, he meticulously traces the history of autism and the lives of the neurologists, psychologists and doctors who chased its elusive identity. He focuses especially on two psychologists, Leo Kanner in the United States and Hans Asperger in Nazi-controlled Vienna who identified the syndrome and pioneered its study through observations on hundreds of cases. Asperger was the first one to identify a variety of signs and symptoms that contribute to what we now call autism spectrum disorder, and his studies were expansive and nuanced. Silberman’s account of both the foibles and the triumphs of these two individuals is fascinating: while Kanner’s fault was in assigning the blame for autism to parents (he coined the phrase "refrigerator mother") and focusing on children, Asperger identified mostly high-functioning autistic savants in his publications for a chilling reason – so that the lower functioning cases could avoid the ghastly fate met by victims of the Nazis’ euthanasia program which aimed at eliminating “mentally feeble” individuals. Both Kenner and Asperger meant well, and in Asperger’s case his withholding of the identities of autistic people literally meant the difference between life and death. And yet as Silberman so adeptly demonstrates, this was one of those cases where the intentions of humane and well-meaning researchers actually caused harm to public perceptions of the syndrome. Kanner and Asperger’s story is an instructive lesson in both the vagaries of scientific discovery and human nature and the sometimes unfortunate intersection of science with politics. The selective reporting of high-functioning patients in case of Asperger and children in case of Kanner led to a massive underreporting of autistic cases and the creation of a guilt complex among parents. It also led to a delay in the recognition of autism as a spectrum of disorders (Autism Spectrum Disorders) rather than a narrowly defined condition. It wasn't until 1981 that English researcher Lorna Wing finally publicized Asperger's wide ranging observations; and it wasn't until 1991 before German researcher Uta Frith finally translated his work. Encouraged by Wing's work, when the diagnostic manual DSM-III-R finally classified autism as a widespread and bonafide syndrome with a textured and wide-ranging spread of symptoms and issues, Kanner and Asperger’s inadvertent underreporting of cases led everyone to believe that there was a sudden ‘epidemic’ of autism, a belief that triggered even more soul-searching and the assignment of cause and effect to all kinds of environmental variables including vaccines. Much of the media with its emphasis on sensationalism and simplistic explanations at the expense of subtlety and complexity did not help matters, although ironically as Silberman tells us, it was a movie - "Rainman" - that brought a lot of public attention to autism. It is in the second half of the book that Silberman sternly clamps down on fraudulent claims of connections between autism and vaccination, including the retracted work published by Andrew Wakefield. Finally, Silberman’s detailed account draws up wonderful and sometimes very moving portraits of families and individuals affected by autism. Also included are capsule portraits of famous people with autism and Asperger's syndrome like Nikola Tesla and Temple Grandin. Silberman makes it clear that such people defy easy classification, and we do them and ourselves a disservice when we stereotype and bin them into discrete categories. He interviews hundreds of people who are stricken by the syndrome and tells us the stories of both adults and children who first struggled to cope with the disease and then found solace in meeting similar people and connecting with support networks. He also profiles families from a remarkably wide cross-section of society – from people living below the poverty line to wealthy California families - who are convinced by unverified connections between the environment and autism. Silberman does not agree with them, but he empathizes with their concerns and tries to understand them. Fortunately the stigma associated with autism spectrum disorders is gradually giving way to a more subtle understanding, but as Silberman indicates there is still a long way to go. As the title puts it, his plea is for a world that appreciates neurodiversity; the fact that even people regarded as psychologically different can have very important and valuable perspectives to offer. If I had some minor gripes with the book, they were with the sometimes long-winded digressions on the lives of autism researchers and patients and the relative lack of discussion of cutting-edge biomedical and neurological research on the topic, including work from genomics and drug discovery. But these are minor gripes. Silberman has painted a rich, empathetic portrait of a devastating, baffling but ultimately comprehensible disorder and its history which we all owe ourselves to appreciate. Because ultimately, as the central message of this book reveals, the cure for autism is in understanding and empathy. The cure lies in human nature itself.