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Neurotribes: The Legacy of Autism and the Future of Neurodiversity, by Steve Silberman
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Product details
Paperback: 560 pages
Publisher: Avery; Reprint edition (August 23, 2016)
Language: English
ISBN-10: 0399185615
ISBN-13: 978-0399185618
Product Dimensions:
6 x 1.4 x 9 inches
Shipping Weight: 15.5 ounces (View shipping rates and policies)
Average Customer Review:
4.6 out of 5 stars
482 customer reviews
Amazon Best Sellers Rank:
#16,569 in Books (See Top 100 in Books)
Autism. Sometimes it seems like no one really knows what that word means. Even among medical professionals, that word has so much vagueness and leeway that it sometimes seems like it can include just about anyone with some sort of abnormal behavior. In NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, Steve Silberman may not answer all the questions about autism, but the questions are there and he provides plenty of fodder for discussion.In terms of a percentage of content, the majority of NeuroTribes concentrates on the Legacy part of the subtitle. Acknowledging that autism as a medical or psychological diagnosis is a relatively recent phenomenon, Silberman looks at historical figures and records, describing some individuals who, if they lived today, would most certainly be considered autistic. History buffs will enjoy reading about Asperger, Kanner, and other pioneers who first developed the idea of autism as a unique diagnosis.Sadly, for most of our history, many people we now see as autistic would have been thrown down a well, ostracized, left to die, or, for the lucky few, institutionalized. Silberman recounts the history of abuse that autistic individuals have suffered (and more recently that we would like to admit). Similarly, he traces the shift in the perception of autism, to "viewing it as a lifelong disability that deserves support, rather than as a disease of children that can be cured." Some of the "treatments" that medical professionals used to try to "cure" children of autism are truly barbaric and unconscionable. I know hindsight is 20/20, but it's hard to imagine what some of those folks were thinking. . . .Two major issues Silberman discussed were, I thought, left without a satisfactory resolution. First, the question of a relationship of autism and vaccines. In my limited reading, it seems as if the medical community has pretty well debunked the notion that vaccines, specifically the preservatives in particular vaccines, cause autism. Silberman clearly rejects that notion as well. However, he offers enough anecdotal evidence of the connection that it seems there are still some legitimate concerns. I am not a psychologist, psychiatrist, or neurologist, just a casual reader, but I have some sympathy with those parents who report drastic changes in their children immediately after receiving a vaccine. Their experiences cannot be rejected out of hand.The second issue that I wondered about is the enormous growth in diagnoses of autism. As awareness grew, and especially as autism was described in the DSM (Diagnostic and Statistical Manual of Mental Disorders, the Bible of the psychiatric profession), it raised the question as to whether there were more cases of autism, or simply that they now had a name and psychiatrists were putting the name to work. Some studies showed that the DSM "trigger[ed] a significant rise in diagnoses." They found that "awareness of autism among professionals was dramatically increasing at the same time that the boundaries of the condition were expanded. The new numbers reflected the estimates realigning themselves with the reality of the spectrum."So is there some evolutionary change leading more and more individuals to have autism? Are factors in the environment or toxins in vaccines or other man-made factors leading to more occurrences of autism? Are there really more people with autism, or is autism simply being more widely recognized? These questions don't have easy answers. They might not have hard answers. Silberman doesn't have the answers. But they are interesting questions to contemplate.Whatever the case, autistic individuals are becoming better and better at navigating the wider world. Starting with ham radio, then with the advent of computer bulletin boards and now with the various ways the internet allows people to network and create virtual community, autistic people are more connected and empowered than ever. Technology has been a huge boost for their opportunities for employment and learning. In fact, they themselves have developed much of that technology!Silberman features people like Temple Grandin, perhaps the most famous autistic person to date, to demonstrate that the possibilities for autistic people to have productive lives, impacting their chosen fields and the world, are limitless. Parents of children with autism and adults with autism still have battles to fight, and public perception is still sometimes an obstacle. NeuroTribes gives reason for hope. Those of use who might be considered "neurotypical" must recognize the growing neurodiversity around us and appreciate the contributions those who are not neurotypical make to society.Thanks to NetGalley and the publisher for the complimentary electronic review copy!
As an autistic adult, I pre-ordered NeuroTribes with great excitement and read it eagerly when it arrived. I think this is an important book that sheds much needed light on the history of autism research, and on the pitfalls of autism parenting culture, and gives some indication of the direction of autistic culture. However, I'm holding back on a fifth star because I felt that he could have gone much further in clarifying that autistic people do come in a great variety of personalities, abilities and disabilities; that the Kanner's vs Asperger's distinction is in fact meaningless; and most importantly that autistic people do not need to achieve great things to be valuable as human beings.
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.
I per-ordered this book a few months ago and last week also ordered the Kindle version. My kindle version was delivered promptly this morning and I've been reading it since. I have a paperback version that is on it's way to be delivered today so I can share a copy with my husband and my doctor. Thus far this book promises to be what I had hoped it would be, another opportunity to understand myself better, and an opportunity to help others understand those of us on the Spectrum. I was diagnosed with Asperger's last year at the age of 53. Finally, after all of these years, I continue to understand that I am not broken, or in need of repair, just simply different. Thank you Mr. Silberman for your dedication to this topic and for writing what promises to be a very helpful book for the Neurodiverse and Neurotypical world.
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