072 Non Fiction Review - Neurotribes by Steven Silberman

hi there book welcome to another non-fiction review now the author of the book that we're going to look at today before he started his research he said everything I knew about autism I had learned from Rainman now before I read this book I was not far ahead you all know I can't be relied upon to see something like a film no matter how well it did at the box office Rainman I think was 20 years old when I finally borrowed a DVD from a friend yeah and got caught up that's my usual style before that everything I knew about autism came from Mark Haden's novel The curious incident of the dog in the nighttime and also reading Facebook posts from an old friend living in Texas whose son had been diagnosed what led me to buy the book that I'm going to review today was this realization that out in the online World there was a debate going on about how to regard autism with various agencies and interest groups setting themselves up on different sides I was starting to feel confused the way a casual Observer will my friend in Texas was clearly determined to do the best by her son and she knew which group stood for what but I didn't want to ask her to take time to teach me I picked this book mainly because the neurologist Dr Oliver saxs recommended it and wrote the forward and I remembered how compassionately he dealt with his patients who had to adapt after they'd had brain injuries and if you haven't read the man who mistook his wife for a hat I highly highly recommend it but it isn't Dr saxs that we're going to look at today the book we're going to look at today is neurotribes the legacy of autism and how to think smarter about people who think differently written by the science journalist Steve Silberman straight into our first question then can I summarize this book Steve Silberman is writing an affirming acccept accepting history of neurodiversity now just to be clear this puts him in contrast to and in conflict with this second opinion the second view which regards autism as a recent pathological development and that same view is wanting to identify the environmental cause and arrive at a cure okay so Silberman is arguing something different Silberman argues for a much longer history of an inherited neurodiversity that has been obscured because of social stigma that we have around difference of any kind really and also misdiagnosis he examines in detail the 20th century path which has been traveled by parents by medical experts and by autistic adults themselves to reach a better understanding and with a focus on the personalities and political decisions that were taken in the United States and the United Kingdom next question what do we know about the author Steve Silberman was born in Ithaca New York in 1957 according to an article that he wrote for fry magazine he was named Steven Deus after the protagonist in portrait of the Artist as a Young Man by James Joyce silberman's father loved Joyce and he would read Ulisses aloud to his son now silberman's father was a teacher but he was also a dedicated political activist this was a very brave decision in the late 50s early 60s when the US government had just been blacklisting any suspected Communists Silberman says his father was fired from several jobs because he wasn't afraid to attend protest marches or voice his opposition to the war in Vietnam uh he joined the Communist party but he left later when the party would not change their position against gay marriage Steve Silverman studied psychology at Oberland college and then he went on to get a master's degree in English literature from Berkeley from Berkeley he moved to San Francisco and he made a living in journalism so he was writing science articles for a number of public Publications but mainly for Wired Magazine in 2001 he wrote an article in wired about the prevalence of autism in Silicon Valley well reaction was Lively and Silberman had agents approaching him and asking if the article could be developed into a book but Silverman said he did not feel ready he spent another 10 years Gathering feedback and research material and then writing the book itself took an additional five years harking back to his parents commitment to activism Silverman told the Guardian newspaper quote I was raised to be sensitive to the plight of the oppressed one of the things I do is frame autism not purely in clinical or self-help contexts but in a social justice context I came to it thinking I was going to study a disorder but what I ended up finding was a civil rights movement being born neurotribes won the Samuel Johnson prize for non-fiction in 2015 the same year it was published if you would like to read the rest to the interview that Silberman gave the Guardian newspaper in that same year there will definitely be a link in my description box let's talk now about the structure of this book neurotribes is 516 pages long as an ebook of which 478 pages are the text the ebook has a URL link to a bibliography rather than having it as part of the book text there are also notes from Pages 480 to 514 but there is no subject index I could not figure out whether the paperback version would have an index so if anybody knows you know please feel free to leave a comment Silberman begins his book by going back to the late 1700s taking an up close and personal look at the English scientist Henry Cavendish and he wants to make the case that Cavendish was clearly on the autism spectrum and then eight of the 12 chapters in this book tell the story of how autism has been identified and regarded throughout the 20th century it's a history which is very careful to note how often autism was not correctly identified because the indicators were often lumped together with symptoms of schizophrenia or psychosis it Chronicles the the lives and the methods of the key personalities who made contributions helpful or otherwise to the process of understanding if you have heard of names like Hans aser Leo caner Bruno bleheim Bernard rimland or Lorna Wing associated with ortis you'll be able once you finish this book to fit them onto a timeline and to know exactly what part they played most importantly Silberman explains how the expansion and revision of the DSM in the United States this is the diagnostic and statistical Manual of mental disorders it broadened the scope the diagnostic scope of autism which in turn led to very marked increase in the number of people who were considered to be on the Spectrum in the late 1990s and early 2000s and that was what caused a split between researchers and autism groups so you had one group of people who were accepting autism as a naturally occurring genetic variation and another group who were maintaining a pathological View and were looking for causes and cures the final chapters switch from talking about those who study autism and those who are parenting autistic children to those who are autistic and it looks at what has happened regarding recognition and accommodation for autism once the activism became driven by those who understood the condition firsthand okay on to question four how did I get this book and how much did it cost well back in August 2020 I borrowed this book I didn't even know this was a thing I borrowed it using my Amazon Prime membership thank goodness I didn't borrow it as a library book because you know it would have been three and a half years overdue and I would have owe a small fortune in fines now the Kindle ebook price on amazon.co.uk right now is 99 and Amazon are selling the paperback version for £ 1340 in usar that's the equivalent of about $17 and we'll go on to question five which is why did I choose to read this book and for that we're going to have to go back back to 1996 in 1996 I was really helped by the publication of a different book by Elaine Aaron PhD and it was about sensory processing sensitivity the title of the book was called the highly sensitive person this book explained to me for the first time why it seemed that my brain was not doing the things that other people's brains were and because of it I was able to understand myself finally take care of myself better sensory processing sensitivity it's not a form of autism right it is not on the Spectrum but as it happens there are a few shared characteristics so once I realized that brains could could differ in the way they can process external and internal stimuli I wanted to know more about autism and I was looking for a good starting Point kind of book and neurotribes was great because it has this historical survey plus it also has this practical insight into what it means to be on the Spectrum my next question is whether I found anything unexpected or particularly interesting with this book yes a Silberman devotes two chapters to the earliest known Research into Spectrum Behavior which started at a special unit at the Vienna University Hospital in 1911 special education Edwin Lazar developed a concept that was called um H pedagogic Lazar was assisted by a number of very forward-looking teachers and Medical Specialists and that included a pediatrician named Hans aser Silberman credits aser as being the first to identify the characteristics of autism and to view them as inherited and he speculates that it might be connected with the inheritance of high intelligence because Asperger noticed that many of the children referred to him with these autistic behaviors also had Highly Educated parents I'm singling out Asperger because there is much controversy about his life what part he played in the National socialists eugenic agenda after Germany and Austria United silberman's reference works for these chapters they include a biography written by Asperger's daughter as well as writings from other members of the special unit which were describing Asperger's methods and his conclusions I would like to read more I must admit before I make up my mind because the research Silberman has used it includes works that he had to have privately translated and they have not been published in English the Asperger described in those writings just does not sync with the reputation he has acquired for being a willing cooperator in the Nazi extermination programs at the same time I've put a link in my description box to an article by Simon Baron Cohen written for scien ific American three years after silberman's book was published and Baron Cohen points to strong primary references which suggest that Asperger referred vulnerable children to a clinic with a known reputation for carrying out eugenically motivated murders question seven is there anything readers should be prepared for if they decide to read this book the number of children in the last century who have been murdered forcibly sterilized sent to overcrowded institutions with untrained staff just to hide them from public view the number of children who were subjected to experimental treatment regimens diets medication these children have never been counted Silberman does not hold back from recounting some of these experiences and they are upsetting and shocking to read on a less serious note chapter n of the book is titled the Rainman effect and it charts the the whole story of how the script idea developed introduces you to the specific people on the Spectrum who either provided inspiration for the story or they functioned as inclusivity advisers and Silberman discusses the impact of the film how it marked the beginning of a sea change in public awareness and wider understanding now one fact I did not know you may Dustin Hoffman was originally cast to play Charlie babot instead of Raymond but he would only go ahead with the film if he got Raymond's heart and it's also really enjoyable to read the stories of people on the Spectrum like Temple grandon or those who were never diagnosed but they were suspected to be on the Spectrum like Hugo gernsbach because these people have demonstrated the advantages of their perceptual abilities and they've shown what they can give to the world okay that's it any ideas for related or follow-up reading well I really loved Silverman's story about Hugo gernsbach and it included a men of gernsback's foray into fiction writing with a novel and I've got to put the title up here okay CU you're not going to believe it until you see it Ralph 124 c41 plus a romance in the year 2660 the book was published in 1925 so it's in the public domain it's available on Project Gutenberg gerbach believed that he was inventing a new genre and what was he going to call it scientif fiction and of course we know a new genre did come about we just call it science fiction okay everybody that is it it it it it but expect another fiction review very soon because I'm going to record it straightway after this one just going to publish it a little bit later I have finished a ya book this week yeah you heard that right ya I'm going to have to give kudos to a Book Creator right now and she is debate books she called out the fact that there's a fantastic ya alternative reality series but it doesn't get the same amount of attention on book Tu nope not the way Hunger Games and Twilight and Harry Potter get attention look out for that video that'll come your way on the last Sunday of January yeah already the month is almost up I hope you can all meet your reading goals without losing any sleep okay take care everybody bye-bye