NeuroTribes: The Legacy of Autism and the Future of Neurodiversity in Science and Inquiry

Feb 27, 2016 Petra X rated it really liked it

Shelves: reviewed, popculture-anthropology, 2016-150-reviews, medicine-science, psycho-neurology-crime, 2016-read

Finished. Very long review. Apologies. Skip to paragraph 3 ** for a horror story. The book was hard to rate. Some of it is as bad as a 1-star: excreble writing when he's giving far too much detail about the irrelevant (to the book) discoveries of the 18thC scientist Henry Cavendish whom he confidently diagnoses as Aspergers. 3 stars for most of it where the research is general too narrowly focused on too few people but quite in depth for them and 5 stars for giving away such appalling things as Finished. Very long review. Apologies. Skip to paragraph 3 ** for a horror story. The book was hard to rate. Some of it is as bad as a 1-star: excreble writing when he's giving far too much detail about the irrelevant (to the book) discoveries of the 18thC scientist Henry Cavendish whom he confidently diagnoses as Aspergers. 3 stars for most of it where the research is general too narrowly focused on too few people but quite in depth for them and 5 stars for giving away such appalling things as the typo in DSM III.

People forget that DSM is a for-profit company. It made $10M on DSM III. It had 25 committees of people searching for evidence of at least 25 different symptoms of autism. They were well paid as professionals. They consulted all kinds of people from teachers to those therapists qualified by attendance at a day's seminar in some hotel ballroom. In other words, everyone involved had a pecuniary interest in diagnosing autism in as broad a way as possible.

** But to the terrible typo. For those who might be autistic or have aspergers or might not but definitely seemed to have something, there was always PDD-NOS. The intention was that children being diagnosed would have a certain number of symptoms from list A, from list B and list C. However, instead of 'and' the word 'or' was substituted. The author reckons that 75% of all children diagnosed with PDD-NOS didn't in fact have anything.

Hans Asperger said, a long time ago and his words have been nearly forgotten, trampled on and now totally ignored, not to pathologise eccentricities! Just because someone is weird doesn't make them mental! Forget that, they're all on the spectrum now.

I was going to write a long and well-argued (hopefully) review of the book and of own my own opinion that Aspergers and Autism are not related at all. But I'll keep that for another time and stick to reviewing the book (view spoiler). I do think that a lot of children so diagnosed don't have autism at all and grow out of it (or according to many therapists are 'cured') in much the same way that 90% or more of the kiddies put on Ritalin turned out to be normal adults. The incidence of ADHD in America in children is higher than anywhere else in the world. But the figures for adults are more or less the same in all the countries of the West.

By all evidence that I've seen and read, Aspergers is most often just a personality type, that is unless you want to diagnose almost the entirety of Silicon Valley and perhaps computer people in general with having it. Would we even be so advanced in electronics without these people? In any case, quite a few of the 'symptoms' of Aspergers are common to Prosopagnosia or face-blindness (I have it so I know) which is only just being recognised and most people with it just think they are bad at remembering people, but there is more to it than that.

If a child has hobbies he is really into, he's encouraged and parents' say things like, 'the way he's always taking apart things, you could see he's going to be an engineer'. If a child would rather just play with one good friend, then that friend gets invited over more for tea and parents' say he's a bit of a loner. If the child is really good at maths, parents praise him. But once he has a diagnosis of autism, suddenly he's not got a hobby he's mad keen on, no that's perseveration, his kind of sociability is now inability to communicate, his ability with maths is an unhealthy autistic obsession. And so it goes... It's a self-fulfilling diagnosis.

So overall, it's quite a good book on the history of the diagnosis of Austism and relatively recently, Aspergers. But it isn't really about Neurotribes at all.

A final thought. If we stopped thinking of neurotypical people as normal but thought of them as the most common personality type, or the most usual, then those who were different would not be abnormal, but unusual, rare or even, as say A+ is in the world of blood groups, just uncommon. There would still be those who were definitely abnormal, Autism wouldn't go away, but people who are different wouldn't be labelled and if there were enough of them in each group, might get special ed. As in - a group of nerdy loners that don't like playing games in the playground, could be taught together in their favourite academic subjects and everyone would be a winner. Teachers, children and society. In any case it's better than making them depressed and feeling bad about not fitting in by labelling them abnormal.

Notes on reading the book(view spoiler)[ Even though the author was intent on including own evidence to support that, there were enough signs when hUpdate It's getting better. I'm on to Vienna and Asperger. The problem I have with the book is I think Aspergers is a) misdiagnosed most of the time and b) it isn't related to Autism at all and all I'm reading is the conventional viewpoint and absolute disdain for unconventional therapies which I more or less share. The author writes well but it does seem to be confirmation bias all the way through. He has an agenda and includes only that which fits into it.

An interesting point. Firstly that Sweden removed the mercury preservative from it's vaccines back in 1987 and Japan banned the MMR altogether. Their rate of autism is on a par with other countries using the same diagnostic criteria, it hasn't dropped. The vaccine thing was proved to be a hoax and Wakefield a charlatan. He was actually employed to prove that the vaccine caused damage and had produced his own vaccine to sell in place of the 'damaging' one, but still the myths linger on. Is it because autism is generally diagnosed at age 2, past the age of vaccines, and the parents must have someone or something to blame?

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This started off well and then meandered into a very long biography of the very famous and quite asocial 18thC scientist The detail with which the author went into some of Cavendish's experiments was not only irrelevant but boring, which is worse in a book.

I understand that Silberman was trying to prove historically that Cavendish had Asperger's Syndrome, but all it proved to me was the author's confirmation bias. Everything that could point that way was to be included and anything that didn't dismissed. An example: Cavendish was supposed to not like women at all, not want to deal with maids even, let alone get married. But then the author mentions as an aside he was very friendly with Georgiana: Duchess of Devonshire. I was happier when he got back to modern times and living people. (hide spoiler)] ...more

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Apr 10, 2019 David Rubenstein rated it it was amazing

Shelves: audiobook, psychology

This is a fascinating book about autism. The first part of the book focuses on the history of research into the syndrome. It describes how early researchers tried to formulate the causes of autism, including the pitifully sidetracked idea that cold parents are responsible for the syndrome. The book gives brief biographies of a few historical figures, including Henry Cavendish, Steve Jobs, Nikola Tesla and Mozart who are suspected of being autistic. Just try Googling "famous autistic people in hi This is a fascinating book about autism. The first part of the book focuses on the history of research into the syndrome. It describes how early researchers tried to formulate the causes of autism, including the pitifully sidetracked idea that cold parents are responsible for the syndrome. The book gives brief biographies of a few historical figures, including Henry Cavendish, Steve Jobs, Nikola Tesla and Mozart who are suspected of being autistic. Just try Googling "famous autistic people in history" and you will find an amazing list of inspiring historical figures who were probably autistic.

Our consciousness of autism was heightened immeasurably by the movie "Rain Man", starring Dustin Hoffman and Tom Cruise. After this movie was shown, people everywhere became aware of autism. However, the movie portrays a man who is at one end of the autistic spectrum, who could not possibly live independently. But the autism spectrum encompasses a broad range of capabilities, and high-end functioning autistic people are able to get along just fine.

In some cases, being autistic can assist one professionally. I think first and foremost about Professor Temple Grandin, who realized that her autism helped her to understand animal behavior. She was better able to design and engineer equipment for handling animals because of her unique insights. She has written several books (such as Thinking in Pictures, Expanded Edition and Animals in Translation: Using the Mysteries of Autism to Decode Animal Behavior) and was celebrated in the terrific movie made about her.

The latter part of the book is about the controversies between those who think of autism as a disability, and those who think of autism as simply a different way of thinking and living. This is where the book becomes most interesting. The book also discusses why autism seems to be diagnosed more frequently now than in the past; this is largely due to the enlarging scope of its definition in the psychiatric literature.

I didn't read this book; I listened to the audiobook, as read by William Hughes. His narration is wonderful, and I definitely recommend it to those who enjoy listening to audiobooks. ...more

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Mar 13, 2019 Charlene rated it it was amazing

Shelves: general-science

Far too often, people overuse autism, namely Aspergers, as an excuse to allow their kid to be mean to other children or to justify special treatment for their offspring -- like when they demand a disproportionate percentage of a school's budget be spent on their child, without any care that there is a finite amount of money that is supposed to be spent on all children. If their child had a real disability or even met the actual criteria for autism, as outlined in the DSM, then they should receiv Far too often, people overuse autism, namely Aspergers, as an excuse to allow their kid to be mean to other children or to justify special treatment for their offspring -- like when they demand a disproportionate percentage of a school's budget be spent on their child, without any care that there is a finite amount of money that is supposed to be spent on all children. If their child had a real disability or even met the actual criteria for autism, as outlined in the DSM, then they should receive funds to help their child receive an integrated education. However, there are parents who have no qualms about waging war with the school to drain the budget in order to serve their child more than other children, when their own child does not even meet the DSM criteria for ASD. It seems to have become a thing for extremely privileged and entitled parents to fill out self report questionnaires that overstate the issues their children are dealing with. These parents also often like to claim that vaccines harmed their children and caused their (imagined) autism. These "mommy warriors" and the dad's who support them spend so much of their time stealing money from the school budget and fighting science for a condition that their child doesn't even have. I would like to see fewer of these people in the future. Any book about autism should address the ways in which people use the diagnosis to cheat other members of society. For this reason, I am skeptical of any book that does not address the over diagnosis of autism by school officials who do not use the DSM criteria (this book did not address that). Instead they use biased and extremely subjective parent self report questionnaires. I am also skeptical of any book that makes it seem as if anyone interested in engineering, science, or anything else technical must have Aspergers or autism. This book began by suggesting that engineers *in general* have autism and that it must be something in their genes. In fact, he basically called introverts and geeks aspies. This served to strengthen stereotypes and continued to cultivate the idea that smart, tech savvy people are all on the spectrum. I was sure I would give it 3 or fewer stars. Despite this criticism, the rest of the book was so fantastic, I think it deserves at least 4 stars.

The different examples used by this author of people who likely had autism, were very well chosen. I think even people who are as annoyed as I am at the over diagnosis of autism would agree that the people he chose to highlight did indeed have full blown autism. While describing autism's history Silberman recounted a really delightful history of Henry Cavendish, who demonstrated an understanding of how physics and chemistry worked, 100 years ahead of his time -- understanding of what was later termed ohms law, understanding that hydrogen and oxygen were the atoms in water, discovering argon, his fairly accurate measurement of the density of Earth. Outstanding tribute to Cavendish! Silberman also chose to highlight my idol Dirac. This short history of Dirac was just as good as any brief discussion you can get from any book that includes Dirac, except for the short bio of Dirac in Neutrino Hunters by Ray Jayawardhana, which was exceptional.

More than who Silberman chose to include in his book was the inclusion of histories that are associated with autism. So many inclusions seem like they should have been tangents, but they ended up providing a history of autism in a much richer, detailed, and complete way than I have ever heard. Silberman's discussion of the holocaust focused on research conducted on children who were considered "idiots" and those who were simply labeled annoying was top notch and addictively readable. He included the history of gender identity "disorders" as well as the treatment of PKU to help the reader understand not only the medical aspects of autism research but also the societal aspects. Silberman also treated readers to the making of Rain Man, including a discussion of some of the real life influences and Dustin Hoffman's preparation for the role.

Another really nice aspect of this book was the difference in researchers who studied autism. Some claimed it began at birth and others recognized that people with less severe symptoms, which were only apparent around 2 years or older, were in fact also symptoms of autism (Aspergers). I think it is hard to get a clear definition of where the line should be drawn, which is partly why Aspergers was removed from the DSM. Nevertheless, it was clear that some people should have the diagnosis of ASD, even if they had less severe symptoms than people who have lost speech, beat themselves up, engage in rocking behaviors or echolalia, and the like. When discussing the differences between Aspergers and autism, Silberman also recounted the behavioral modification therapies tried over time and provided the various justifications from different researchers for their sometimes extreme methods of treatment.

All of the positive aspects of this book were so engrossing and informative, as well as told in a novel way, that it more than made up for anything that might have been left out. I enjoyed this book immensely.

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May 30, 2020 Bel rated it liked it

Shelves: non-fiction, history, science, health-and-medicine, audiobooked

A very interesting and detailed history of autism, its study, and associated activism and development of culture. It was way longer than it needed to be and could have done with a good editor, but then I did really quite enjoy all the discursive stories Silberman drops in.

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