Petra is wondering when this dawn will beome day's Reviews > NeuroTribes: The Legacy of Autism and the Future of Neurodiversity
NeuroTribes: The Legacy of Autism and the Future of Neurodiversity
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Petra is wondering when this dawn will beome day's review
bookshelves: 2016-150-reviews, 2016-read, popculture-anthropology, psycho-neurology-crime, medicine-science, reviewed
Feb 27, 2016
bookshelves: 2016-150-reviews, 2016-read, popculture-anthropology, psycho-neurology-crime, medicine-science, reviewed
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)
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)
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Reading Progress
February 27, 2016
–
Started Reading
February 27, 2016
– Shelved
March 7, 2016
– Shelved as:
2016-150-reviews
March 7, 2016
– Shelved as:
2016-read
March 7, 2016
– Shelved as:
popculture-anthropology
March 7, 2016
– Shelved as:
psycho-neurology-crime
March 7, 2016
– Shelved as:
medicine-science
March 7, 2016
– Shelved as:
reviewed
March 8, 2016
–
Finished Reading
Comments (showing 6-55)
message 55:
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Nancy
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rated it 4 stars
Feb 28, 2016 07:52PM
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The DSM V is eliminating the Asperger's designation altogether and lumping everyone in one group. Which makes more sense, really.
At some stage in some review, probably this one, I will write why I don't believe Aspergers and Autism are related and why a misdiagnosis is harmful to at least one group, if not both. But I want to finish the book first.
I would not judge parents who have first hand experience.
I don't think so. I think the "sudden increase" is due to diagnostic methods. Same with ADD/ADHD. Greatly aided by Big Pharma and Alternative Therapy, some of who invented new treatments and new qualifications and stood to benefit financially.
People always want to find someone to blame and then someone to fix it. And if the fixing it costs a lot of money and time and effort then it must be good, right?
We are thinking along the same lines. :-)
I have all my dyspraxic son's traits and some extra, and generally more marked than him. When I was in school, I don't think any autism spectrum disorders were recognised. I've seen first hand the degree of isolation that even 'mild' Autism can create and while Aspergers-> Dyspraxia/Dyslexia can also do that, it is not usually limiting to the same degree and I claim it has unlocked unusual powers of observation, pattern recognition and lateral thinking creativity in me.
I was quite late speaking and reading - but when I started, boy did I let rip! I may have had to carry a fortnight's schedule of text books with me daily, as the only way to have the right ones when needed - but without knowing why or how, and despite being previously labelled 'slow', 'clumsy', 'obtuse', 'untidy', 'socially awkward', 'loner', 'obsessive' 'inflexible' (in my kindergarten reports! = 'stupid') from the start in high school I was immediately top of my year among boys, and every year after that, in a contingent of hundreds per year from two large towns (not just half a town, for my kindergarten school). Yet I probably would have failed my '11 Plus' exam for selective education by Grammar School, had they not just abolished it!
Sadly my parents only paid attention to negatives, never praised achievements etc as my father was a tyrannical perfectionist auto-didact, with sociopathic and narcissistic tendencies. While I'm sure he passed on curiosity and healthily determined characteristics to my brother and myself, I'm glad I share none of his hostility to family. I wonder now if he too had an autistic syndrome personality?
I think it's still very difficult to know, with any certainty, what is dictated by genes mainly or even alone; significantly destructive character traits can be erased in a generation, following a change in circumstances (marriage to someone loving, wise and patient helps) or even a life-changing insight (such as 'finding faith'). But as far as I know, the traits of Autistic spectrum remain through life whatever providence brings.
I know it's beyond the purview of this thread, but my reading is often now about memory and the interpretation of sensory perceptions (jut downloaded the complete 'Temps Perdues' by Proust!). The 'answers' I find often raise more questions, some hostile.
Coming into my own older age (not quite 60) I find that my instinctive or self-discovered ploys to hide/escape and overcome dyspraxia / Aspergers are now failing me and I wonder whether I should seek diagnosis (at least £250 GBP cost); what solidarity with others, medical benefit or other support, if any, would having an official diagnosis bring me?
Huge therapies not based, or only loosely so, have grown up around autism because there is no cure and for money these people will promise a cure. Everything from $20 a session nutrititionists to multi-million dollar scams. In What About the Boy? the parents resort to the 24 hour a day punishing schedule of The Institute of Human Potential a multi-million dollar business for 'curing' autism. No one gets cured everyone either drops out because the schedule is too arduous or they haven't got any money left.
People put their faith in these therapies because there is nothing else. They'd go to shamans if only a dozen credible people would sell their story to Time about their kids were cured. So these Institutes they also have input and it is in their interests to widen the diagnosis of autism.
I think you should read The Complete Guide to Asperger's Syndrome before assuming Asperger's is a non-trivial personality variation.
It is important not to say you have flu when you have a cold or a migraine when you have a headache, otherwise the 'cures' for flu and migraines are not going to work when someone really has them.
Again, if you read the book you might see the connection with autism.
Austism is in it's classic not-overdiagnosed form one where the person does not want to communicate but to be left to live in their world. Aspergers is the opposite, people who seriously want to communicate and have problems doing so. It is as in all books of this nature, I am expected to believe the book over my own experiences. Sometimes I do, but not always. I have read many arguments for aspergers on the autism spectrum and I don't agree with them.
Robert, I respect your opinion as always. You've had different life experiences to me, but I think this is one we are going to have to disagree on.
Austism is in it's classic not-overdiagnosed form one where the person does not want to communicate but t..."
Your first statement doesn't seem correct: just because someone doesn't communicate, doesn't mean they don't want to. It might mean they are unable to and I've never come across that definition of autism.
I get the impression it's almost the opposite here in the UK: schools try to postpone official diagnosis because then they (the school/local authority) have to pay for additional support, teaching assistant, or whatever.
..."
It was the same with ADHD and Ritalin. The UK, all Europe, was very far behind the US.
It's probably no coincidence that they're all conditions where it is difficult (impossible?) to have a cast-iron diagnosis, in the way that one can with diabetes or Down's syndrome.
On the other hand, there is concern that Ritalin is too readily and widely prescribed in the US, especially to very young children. (I've not investigated the validity of that concern.)
I think there are a lot of mental disorders that are difficult to diagnose. Bipolar is another one. I'm not sure if it is beneficial to make diagnoses broader and broader until all of us have some symptoms of all kind of things. Still I suppose it gets them access to therapies and medications which they may or may not really need. Like antibiotics and the flu... Maybe therapies and a diagnosis have a placebo effect?
Undoubtedly. I know you're a fan of Ben Goldacre, so you're aware of how extraordinary the placebo effect is, even down to red sugar pills being more powerful than blue, and injections more than pills.
You can read it here.
Thanks for that link. It was a well rounded article. My first area of research was on a brain area where electrical stimulation caused analgesia and was later found to be part of a descending active pain supression system that could be activated by acupucture and likely some forms of the placebo effect. It was disturbing that sham acupuncture was shown to work almost as well as proper needle placement but still okay if brain systems involved with expectations and emotions could feed into the pathway. In my projects with rural primary health care delivery I am trying to encourage providers to tap into approaches to help suffering and natural healing with relaxation, stress reduction apps, midful meditation, exercise etc.
But back to autism, I wonder if the author mentions anything about music therapy, which showed up in my reading of This Is Your Brain on Music: The Science of a Human Obsession. Also, God knows what placebo juices in the brain is evoked by therapeutic touch, massage, and simple hugging, but a lot of autistics are averse to touch. How to get past that? I remember Temple Grantin invented a mechanical hugging machine. Which in turn reminds me of Harlow's monkeys, who in experiments in the 50s made up for a lack of a mother (i.e. didn't end up "autistic" or psychotic) when given a cloth covered doll to cling to.
That was necessary though - fake v fake. That is tremendously important. I think we are just at the beginning of research into placebo which may end up being the most important medical discovery of this century. If we can get our minds to heal ourselves then it is going to be down to how to invoke the reaction in specific ways.
message 18:
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Petra is wondering when this dawn will beome day
(last edited Nov 16, 2016 06:05AM)
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rated it 4 stars
Putting up links to your blog and telling people to go and read your reviews there and posting that "comment" twice isn't anything to do with the review, but just self-promotion.
message 16:
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aPriL does feral sometimes
(last edited Nov 28, 2016 08:03AM)
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rated it 5 stars
I don't need "fixing", thanks very much.
message 13:
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Petra is wondering when this dawn will beome day
(last edited Nov 28, 2016 04:45PM)
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rated it 4 stars
Well said! If a person lives an independent life then they are who they are, that's their personality and no one should be pathologising them but more celebrating their individuality, not the bits that personally annoy them. (We all have traits that annoy other people. Except me of course. And the Queen.)
April you have known some people you think have extreme problems. I'm not saying they don't, I'm not negating your experience at all. But to generalise and say about them as a group, "they hurt themselves" as if all of them go in for self-harm....really?
On Saturday I held a book-reading in my shop. It was very special because the author was 10 and had just published her first book. She had been excluded from the American school by the educational psychologist of a headmistress. They said she has autism and does not fit in and is disruptive and needs special education which they cannot supply.
So I've met the little girl on numerous occasions. She is definitely different. She's much brighter than most children and will interrupt conversations with corrections and her point of view. She goes on about things that are her interests and is more blunt in both words and facial expressions when bored or thinks you are wrong.
She is also sunny, jumps around a lot and at least three-quarters of the time a little sweetheart. Her mother now homeschools her and her brother.
She's a fine little girl who was reading her book and telling the other kids how they also could write one and get it published. Why would someone want to change her? Why not encourage her? She will find friends who don't mind her weirdness and enjoy her intelligence and creativity. We are all different.
Apology accepted; it's certainly true that sensory issues are top of the list of things autistic people tend to want help with and the one you describe sounds particularly bad in that it could lead to potential physical harm.
A lot of autistic people are sensitised to language that suggests their condition is something that needs to be fixed/cured as any genuine "cure" is essentially a personality wipe; the destruction of the self they identify with. I am lucky enough to live in a society where such views are comparatively rare and have negligible influence on health-care decisions. Others are not so fortunate e.g. in the USA bogus treatments that claim to normalise or cure are all too prevalent and the insurance industry is driven to find a "cure" because they cannot profit from life-long expensive support services to autistic people.
Well said! If a person lives an independent life then they are who they are, that's their personality and no one should be pathologisin..."
You've certainly described a number of traits that would be considered autistic and the attitude on show is typical of that towards anybody out of the ordinary: You're inconvenient so get lost.
Surely you mean "he" not they? This is particular-to-a-person behaviour and it might mean that person is very difficult to live with but to suggest it is general behaviour and ought to be fixed if possible.... I can't go along with that.
That is, as you say, very American.
I do think people can really have these neurological problems though. Without doubt. In my son's class in school, a best friend's daughter, another friend's sister's son.... these are people who definitely have problems on the neurological spectrum that have caused them and others infinite misery.
But I don't accept having personality traits that are unusual is anything except that. Not ordinary. I like people out of the ordinary. I suspect a lot of book people do.
My companion wa..."
Are you yourself autistic or have aspergers? It does seem that the way you go on and talk about yourself and your experience and ignore other comments when they don't fit what you want to talk about that you might be. If so are you diagnosed or self-diagnosed and do you think you need fixing?
message 7:
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aPriL does feral sometimes
(last edited Nov 29, 2016 06:36AM)
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rated it 5 stars
Was that wrong of me? After I hurt feelings, I thought I should reveal why I am so disappointed with the state of real educational resources for autism. Are you asking me to shut up and leave?p because I wasn't coherant? Ok. Probably guilty. I did not sleep well. Oops.
The book is about how society has been stumbling through the centuries trying to understand a set of mental symptoms and failing. It shows how terrible neurotribe members end up under many experimental programs and failed 'cures'. Currently, society is failing to help educate neurotribes members in many areas of the country, but when it succeeds it is fabulous. I wanted to share how I saw society fail like the author was talking about in 3/4ths of the book, until the last 20 years, and then it is spotty success.