Book Review: Neurotribes

Neurotribes: The Legacy of Autism and the Future of Neurodiversity, by Steve Silberman

This book reminds me of a Xander quote from “Inca Mummy Girl”. “Typical museum trick. Promise human sacrifice, deliver old pots and pans.”

In essence, I’d have to say, that’s what this book does. If it kept just the first half of its subtitle – if it advertised itself as a history of the autism diagnosis, of the work of Kanner and Asperger and all the eugenic and social horror surrounding them and those diagnosed for the past near century – then it would be a decent book. A very horrifying one, there is a lot of High Octane Nightmare Fuel, especially in the sections that deal with medicine in Nazi Germany. But history doesn’t have to be pleasant. It just has to be true.

Yet what it promises is a look at neurodiversity. At different ways the brain can operate, from autism to ADHD to bipolar to a half-dozen other inborn mental states. And then it doesn’t deliver. There’s plenty on, say, how the Diagnostic Manual of psychiatric disorders started out and to some extent remains more politically oriented than actually focused on solving people’s problems. There’s not much at all on how someone’s brain might work in a “neurodiverse” way, or even on practical aspects of how someone on the autism spectrum, or in the same family with them, can handle day to day difficulties. “Go into a room alone” is not helpful with trying to figure out how to manage the pitfalls of the everyday world enough to buy groceries.

There are two bits of the book I find particularly egregious. The brief, shallow treatment of fear as an innate component of what an autistic person is dealing with, and the similarly casual disregard for dietary self-help by way of vitamin doses and removing food allergens.

First, fear. The book accurately mentions that high anxiety is a fact of life for those on the spectrum, but mostly focuses on stimming and repetitive actions as reactions to that fear. There is little to no acknowledgement of the main cause of the fear: difficulties in sensory processing that tend to fragment what the average socially-oriented person thinks of as a normal perception of the world. Meaning one change in the environment can be as startling as if you were suddenly dropped into the middle of a rock concert without earplugs.

Second, diet. Getting rid of food allergens is medically proven to help so-called normal people clear up problems as varied as intermittent explosive disorder to alcoholism, yet the accounts of parents’ efforts to remove problem foods is mostly brushed off with mentions of “physicians already knew about leaky gut syndrome”. The use of vitamin and mineral supplements is similarly brushed off with “this is anecdotal reports and placebo syndrome”. I grant that Linus Pauling thought megadoses of vitamin C were the answer to everything, but the author appears to have made no effort to investigate if anyone has done controlled studies of vitamin supplements in autistic people, ever. Given that they show up again and again as “this helps” in autistics’ own reports, you’d think he would at least look.

Not to mention, as doctors have put it in the past, “Placebo effect, only 30% effective? You know what we call a drug that helps 30% of our patients? We call that a good drug.”

Long story short – if you want a Chamber of Horrors style history of autism, this book will do you. If you actually wanted a book that offered practical advice on how to create a neurodiverse-friendly world, this book is Fail. Fail with enough Nightmare Fuel to make you want to never trust anyone in the psychiatric profession, ever. The section on aversive conditioning (i.e., beating or electroshocking a “stubborn” autistic) as a moral responsibility… brr.

All told, I am both happy and a bit depressed that I got this out of the library. Happy that they can have it back. Depressed because – well, if someone was looking for hope, this book is not it.

…Just to finish this on a more pleasant note, currently our mulberry tree is full of a flock of cedar waxwings, tanking up on not-yet-ripe fruit for their migration north.

https://en.wikipedia.org/wiki/Cedar_waxwing

I find it wryly amusing that, given how brightly colored they are, the easiest way to be sure it’s them is to see a bunch of fluttering out there yet almost never see the birds. They’re like the bird version of Highly Visible Ninjas. 😉

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16 thoughts on “Book Review: Neurotribes

    1. Agreed. I definitely had to learn coping/adjustment techniques to allow myself to interact relatively well with the general public (not that this is any different in base concept to someone who grew up in one country needing to adjust to another country’s culture and language when he moves there), but none of that was “fixing” any of the things that caused problems. After all, not only could I not actually change most of them (just adjust for them after learning of them), but most of them had beneficial effects in certain circumstances. The only thing I’ve been diagnosed with that I wish had a ‘fix’ is Narcolepsy, because that one is a safety risk for the occupations I trained for.

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      1. Ouch! Yeah. I guess it’s at least better to know what it’s not safe to do?

        Personally, one thing that made a major difference for me was simple sunglasses. Cutting painful glare allows me to actually concentrate on my surroundings.

        AKA, if I can take my sunglasses off to drive, I need to put my headlights on so other people can see me….

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  1. The dietary thing really gets me, even though yes, there is a ton! of crackpots out there and scammers, sadly. The problem is that all diet advice is for the typical person(usually male!). Odd little things like, say, a blood clotting disorder means that 90% of that goes out the window. And given they’ve proven some food effects the brain, you’d think more people would look into it beyond self medication. But the money isn’t there for that.

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    1. Ouch. *Nods*

      Crackpots there are, indeed. In my experience dietary adjustments are like my sunglasses – they don’t solve the problem. But they can make it a little more manageable. If you can at least eliminate allergies as part of the overall stress you free up resources to deal with everything else.

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  2. I think we need a better language for food. It’s hard to have “this food will kill me”, “this food will make me feel bad if I have too much” and “This food is bad for me.” kind of all lumped together under allergies. And on the freeing up resources…never thought of it that way, but it’s a good one.

    Still, thank goodness for chocolate.

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  3. *shyly raise a hand*

    Not sure if this would be more in line with what you were looking for, but Ysabetwordsmith has an excellent storyline/list of poems (An Army of Ones : the Autistic Secession in Space) in which the majority of the characters are neurovariant people, mostly on the autism spectrum. Judging by the reviews, she treat the subject well, and she always list her ressources and references at the end. She also deal with a number of other mental conditions in her other works (for example, Damask, from Polychrome Heroics is a multiple )

    http://penultimateproductions.weebly.com/an-army-of-one.html

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      1. ysabetwordsmith is a fun writer. If you like Army of One, it is the theme for this month’s Poetry Fishbowl – http://ysabetwordsmith.dreamwidth.org/10529708.html

        The Poetry Serial Page on her PenUltimates website shows her other series. Some of which she lets other people play in. Like Polychrome Heroics which is the setting that Damask is from.
        Shameless Plug Moment: I’m one of the people playing the Polychrome Heroics sand-box. Mostly for the Berettaflies thread (http://penultimateproductions.weebly.com/berettaflies.html).

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